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Changing the narrative #4: the QMUL judgment explained and some observations on feedback

February 7, 2019

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 

Institutional abuse is the maltreatment of a person…….from a system of power.”

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Changing the narrative” was originally planned as a series of three posts which explored several different aspects relating to the perception of patients who live with the illness myalgic encephalomyelitis (ME), as I have since 1981 (for more information see About). As a result of the feedback I have received and discussion which has appeared elsewhere, I am adding further posts to respond to and clarify certain points which have arisen subsequently. 

The original question was this: how should the myalgic encephalomyelitis (ME) community in the UK address its reputational problems within the media environment and the wider political, medical and social context?

A full list of the posts in this series can be found here.

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This post runs at about 3000 words. As usual, it is broken down into short sections to make it easier for those who, like me, experience cognitive challenges as a result of ME, or any other condition. 

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Comments on this blog

Please note that all comments are moderated before publication. If your comment does not appear immediately, it simply means that I haven’t seen it yet. If there is a gap between posting a comment and its appearance on the blog, this does not mean that I am exercising censorship. For details of my policy on comments, see the About section of this blog.

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SECTION 1

Parameters and rationale for writing this series: a reminder

This is a summary of the original overview:

The UK’s ME community urgently needs a complete overhaul of its communications strategy. As part of that, a media/reputation management plan should be put in place to head off further damage and generate a new and more accurate representation of the narrative surrounding both the illness itself and the patient community.

This is absolutely essential and decades overdue, not only because of its obvious intrinsic benefits but also because, if done correctly, it will permeate through and create change in every area related to developing effective treatment for the illness and respectful treatment of patients.

The effects of such a strategy would eventually begin to change attitudes towards investment in medical research, appropriate healthcare provision, social care for those disabled by the illness and the handling of  insurance claims. Ultimately, this should gradually create the impetus for a complete culture shift at every level – political, medical, social and popular.

At this point, a much, much smarter approach to strategic communications is required.

I made it clear at the beginning of each post in this series that what I was writing related to the situation in the UK. ME advocacy has taken different approaches in different countries. My comments in #2 were concerned only with UK advocacy during the last ten years, in particular the period from 2010 – 2012.

I also flagged up at the outset of each post that it contained contentious and complex subject matter. If a particular topic is sensitive and challenging then tackling it requires careful consideration. Having reflected on this matter over several years, I decided it was important enough that, whatever the consequences, it now needed to be raised.

It’s easy enough to tap into confirmation bias and write the things that people want to hear. However, whilst the resulting chorus of agreement may be very gratifying for everyone concerned, it doesn’t necessarily provide any useful material in the longer term. Sometimes the difficult stuff has to be discussed too.

As I wrote in #3 (emphasis added here):

ME as an illness is several decades behind where it should be in terms of recognition and treatment. It is therefore necessary to consider what might have been impeding progress, take stock of the current situation and consider where the patient community might choose to go from here.

This includes reflecting on past difficulties and how to avoid them in the future, looking at who currently controls the narrative and debating how that could be adjusted. The overwhelming imbalance between the group which currently controls the story and the ME patient community must be addressed.

Suggestions that I have been “used” or “misled” by other parties

It has been suggested that I have been “used” or “misled” by the SMC (Science Media Centre) and/or the BPS (biopsychosocial) group into writing about historical allegations of harassment and abusive behaviour made against the ME community. Both the SMC and the BPS group are well-known for their anti-ME patient propaganda (see #2 for a taxonomy of the groups involved in this discussion).

To suggest that a member of the ME community has allowed themselves to be “used” by either of those bodies is a very serious allegation. To say that I have been “misled” by them is just a cheap shot, presumably with the intention of undermining my personal judgment and integrity, and therefore not worthy of further comment.

I very much doubt that anything I say here will change the views of those who made those claims. Nevertheless, it goes without saying that such suggestions are without foundation.

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Queen Mary University of London (QMUL)’s freedom of information Tribunal judgment

Tribunals form an integral part of patient engagement, as I discussed in #3 of this series. Following my earlier posts, a number of people have raised the issue of the 2016 freedom of information Tribunal judgment relating to PACE trial data.

This judgment concerned QMUL’s appeal against the decision of the Information Commissioner that certain data from the controversial PACE trial should be handed over to the original information requestor, Alem Matthees. The hearing of this case took place in April 2016. After a four-month wait for the judgment, the Tribunal ordered that the data should be released to Mr Matthees.

Amongst many other matters, the 48-page judgment refers to assertions by witnesses for QMUL that patient activists represented a threat to trial participants. The witnesses surmised that this perceived danger could become real if the participants were to become identifiable as a result of the requested data being released. However, the Tribunal was dismissive of the implied and unsubstantiated claims about a dangerous group of activists in the ME patient community.

The fact that the Tribunal rejected the QMUL witnesses’ assertions about patient activism is extremely helpful to the ME community in rebutting more general allegations of harassment and abusive behaviour. However, the Tribunal’s task was to consider the submissions from all parties on the legal and factual basis for QMUL’s appeal against the order to release the data in relation to the facts of this case only.

The remarks about patient activism were incidental (obiter) to the Tribunal’s ultimate finding, not germane to it, and applied only within the narrow remit of this hearing. The Tribunal’s comments about ME patient activism – and the attendant lack of acceptable evidence – were very heartening. However, the applicability of those remarks lies in the context of this judgment alone rather than as a blanket exoneration of all putative patient activity at any time.

Simon Wessely was not a PACE trial author so he was not a party in this case. The video which I discussed in #2 was associated only with Professor Wessely so its existence was never going to be a matter for consideration by this Tribunal.

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SECTION 2

This next section is an edited version of my comments during recent email exchanges. It deals with the background to the video mentioned in #2 and the reasons for examining the evidence for the harassment allegations

I had been aware of the existence of the abusive video for some years. I know others were too but perhaps not so many. The video was made approximately ten years ago. I think the reason why many people hadn’t come across it was because it was taken down so quickly which, given its criminal content, was inevitable. This is also the reason why it can’t be passed on again.
The video was sent to me in strict confidence from a known source. Revealing the background details would breach medical confidentiality and potentially identify those involved. I am not willing to do anything which might expose anyone to any risk.
The quality of the video is not a sign of high production costs. Anyone with moderate technical skills and access to good equipment could have made it at little or no cost. The person from whom it originated may or may not have had assistance in producing it but that doesn’t affect the original source.
I have watched the video and I have verified its provenance as far as reasonably possible. Its existence provided some of the original material for the stories vilifying ME patients. That negative perception has persisted and the linking of the ME community with abusive behaviour was reinforced, regardless of whether or not it was correct.
The general allegations of abusive behaviour were clearly visible to anyone with access to print and/or online media at the time. The height of the coverage was around 2011- 2013. The video would have pre-dated the PACE and the XMRV patient responses but it provided pre-existing evidence from which to construct and extend the impression of a dangerous patient community. Some charities and groups were quoted in the coverage so they clearly knew about the allegations.
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The use of information given in confidence is always a difficult journalistic and legal decision in terms of whether or not to use it in publication. A public interest test must be applied and, on balance, I decided that the public interest in making the information available outweighed the problems which might arise.
By the end of 2018 (nearly two years after first seeing the video) I decided that the information which I had should be made available. A few members of the ME community appeared to be in denial about the allegations. Newer members of the community simply didn’t know about them; some have expressed their thanks to me for the telling the story.
An additional consideration was that I had, on a number of occasions, been asked by ME community members from other countries whether I knew any detail about the threats and harassment allegations in the UK. Publishing this series of posts answered those questions.
I think it’s unlikely that the plan which I suggested will be put into action. However, ultimately I decided that it was necessary to make the case for it. In doing so, the background story needed to be told in order to explain why I was making the proposal.
The background story wasn’t just about the video but an examination of the evidence generally. I used the video as a case study because it represented hard evidence which I had seen for myself and I was satisfied with its provenance.

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This section is an edited version of my replies to some comments on the posts regarding the proposal for the creation of a media steering group

My purpose in writing this series was to take an overview in exploring how we had reached this point and what the areas for consideration might be, not to expand in great detail at this stage. The posts were long enough already and more detail would have confused things further at this early stage. What I am writing below still only represents a reduction of the issues which would need to be discussed.

The need to achieve community consensus in order to create a media steering group:

A consensus within the community (via existing groups and individuals) would be required in order to set up a mechanism for creating the media steering group (MSG) proposed in #3. The MSG can then be delegated with the task of making decisions on behalf of the patient community. It is not a consensus for agreement on each individual action by the group as that would be unworkable. The MSG would brief an appropriate consultancy, then consider whether to act on the advice received and how it could be implemented.

If this hypothetical scenario was to have any chance of success, it would need to start from a fresh perspective. That means not using any of the current group collaborations as, inevitably, they each come with their own baggage. A new coalition must first be established which does not favour any single pre-existing group.

The trust problem:

The biggest problem is community trust which is currently lacking because of the many self-evident internal divisions which exist, in part, because of the “divide and rule” policy of the BPS group. There is no magic formula for overcoming the trust issue. It is simply a question of whether there is sufficient collective will to move forward or whether individuals accept that the current situation may continue.

An MSG, if appointed, would need to be transparent in its dealings and accountable to the organisations. It is not feasible for it to be accountable to each individual patient. Transparency would be maintained by keeping the community informed of its actions – which does, however, involve more work for group members and would need to be factored into costing and feasibility.

The difficulty of reaching agreement between the charities/groups with their pre-existing views would be a major obstacle in this process. The best option would be for the MSG to set a completely new agenda based on lessons of the past, such as the diverging responses to PACE. Strong leadership would be absolutely essential in this scenario.

Another possibility is to aim for a completely new body to be co-opted and/or elected directly from the patient community, bypassing existing groups. However, such a group would still have to be actively recruited by someone, it would lack credibility and have to start from scratch without being able to use any of the infrastructure from existing groups.

A cohesive voice is needed:

The ME community’s media contact points in existence at the moment are based within various different groups and known individuals. There is no single cohesive voice from an identifiable national spokesperson and this reduces the power of any message. One of the aims of this exercise would be to actively foster and develop media relationships in both above and below the line activity.

For the bigger events, a recognisable national figurehead would speak with greater authority thereby raising the profile of the ME community and its concerns. As I said in the posts, this does not need to interfere with local PR arrangements.

Representatives from the media do occasionally approach the current charities and groups for comment or interview, as has been pointed out. However, these contacts are usually low-key and/or often only in response to a story that has already been put out by the SMC. The ME community should be leading the media and generating its own narrative, not simply reacting to stories from elsewhere.

A new media hub for the ME patient community:

A newly-constituted national ME community media hub should be created. This would be overseen by the MSG. Appropriate events would need to be organised accordingly and it would be made clear to all media outlets how to contact this new media hub.  Media relations would then be managed by the hub on an ongoing and pro-active basis, not just waiting for the next SMC story to break.

In response to: “But I’m not sure if this is due to the ME community handling their media communications badly, or that the odds are simply stacked against us.”:

The odds are stacked against us because, in spite of all the enormous efforts made by many groups and individuals, we still haven’t done enough to change the situation. What I don’t accept is that there’s nothing more we can do about it: there is a standard pathway to address exactly this problem and that’s what I’m proposing. To me, the mystery is why this hasn’t happened much earlier on. Again, this is not “just a bit of PR” but an ongoing strategy on a large scale, underpinned by sufficient funding and professional advice.

In response to: “Could you give some examples in the past where the media response was inadequate and working through a media steering group would have provided better results?”:

Yes – reaction to the publication of the PACE trial in 2011. We knew it would be coming and we should have had a contingency plan in place. The patient community should have had its own media briefing with experts on hand to counteract the SMC spin. That’s the way it works. Professional advice, planning and resources.

In response to: “There seems to be some disagreement about the “threats and harassment” –episode”:

The allegations were made. Again, we should have had an emergency plan ready to repudiate and/or counteract those, or any other, allegations. That is a standard part of any ongoing communications strategy. We have been living with the legacy of that failure ever since.

The need for a coordinated approach:

One of the biggest problems in dealing with any of the above is the lack of coordination amongst the charities and groups. No single spokesperson from just one group can possibly carry the necessary level of authority to address something on the scale of the harassment allegations. A nationally-coordinated, timely and appropriate response is the only possible way of managing a crisis situation. The same principle applies to every other facet of ME action or activism. Without that, the SMC continues to call the shots.

As we know, individual patients/advocates who try to argue the point are frequently ignored or ridiculed (I speak from my own experience here).

The need for expert professional advice:

The other crucial element missing from the current situation is professional expertise. This a complex and long-standing problem which requires highly specialist solutions. The MSG would be created as a mechanism for seeking that advice and setting up a platform from which to launch a proper media strategy.

The MSG would obtain the advice, assess it and then direct any action arising from it. It is not the vehicle for actually implementing it; that would have to come from the existing infrastructure of the charities, groups and individuals who make up the patient community.

To the best of my knowledge, the pathway which I suggested has not been used before in the UK and certainly not on the scale which I’m proposing.

Just to repeat two important points from this series of posts:

1.Collective responsibility does not mean that everyone agrees on the issues but that a pragmatic consensus must be attained in order to move forward.

2. It’s vital to remember that a successful communications strategy is based on a pragmatic approach to how the world actually is, not a wish for how it should be.

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And finally, because it can’t be said often enough:

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 

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Changing the narrative #3: due process, engagement and a pathway (magic bullet not included)

January 21, 2019

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 

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Since I started publishing this series of posts, I have received mixed feedback. I’m grateful to those who have provided positive and constructive comments.

There have also been some less helpful reactions to the previous post. My personal integrity and professional competence have been called into question. The existence of evidence to which I referred has been doubted, thereby implying that I am a liar or a fantasist.  I have been accused of being on a “one-woman ego trip”. It has also been suggested that I am now in the thrall of the “SMC/BPS” group.

Because of the complex and contentious nature of this series, which I flagged up from the outset, “Changing the narrative #2” was a particularly difficult piece to write. From my own perspective, and that of some readers, most of the criticisms raised had already been covered in the post or in the links provided but I accept that this may not have always been as clear as it could have been.

This post runs at just over 3000 words including the re-cap. As always, it is broken down into short sections to make it easier to read for those who, like me, experience cognitive challenges as a result of living with ME, or any other illness.

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trojanwarsvasehelen

The Trojan wars: detail of vase from 5th century BC found in Italy, now in the Louvre Museum

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Introduction

This is the third instalment in my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). A full list of this series of posts can be found here.

Despite the international reach of the internet, each geopolitical region still faces its own unique set of challenges when it comes to healthcare and related matters. This series of posts focuses on the situation in the UK. However, some of the links use references from other countries because the general principles remain the same, whatever the specific local considerations may be.

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Re-cap of #1 and #2

For new readers or those needing a reminder, the purpose of this series of posts is set out here:

Changing the narrative #1

I started writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only then to abandon them because the subject-matter is complex and contentious. While I have written about the topic as part of many other posts, I have never published a post which was devoted to this subject alone – until now.

The question is this: how should the myalgic encephalomyelitis (ME) community in the UK address its reputational problems within the media environment and the wider political, medical and social context?

I have lived with the illness ME, in varying degrees of severity, since 1981. The stigma attached to the illness and the treatment of many patients in most countries is shocking, despite occasional official platitudes purporting to demonstrate real concern about the situation. Sometimes these official pronouncements appear to be genuinely well-intentioned. In fact, they usually represent an unsupportable denial of the illness’s history and its profound effect on the lives of millions of patients worldwide.

The history of this illness – which has probably existed for centuries and been well-documented since the 1930’s – reveals a pattern of scandalous behaviour towards patients by the very agencies which should have been most alarmed at the recorded outbreaks in many parts of the world. It also exposes a chilling lack of respect and compassion for those who have lived with the illness for months, years or, in many cases, decades.

In the film“Unrest”  , director Jennifer Brea says: “You can disappear because someone is telling the wrong story about you.” Sadly, this is only too true – but it does not need to be the case. The status quo can be changed if the process of how to achieve that is better understood. Most of what I say here has been said before by different people at different times in different places – but perhaps not in quite the same way as I express it here.

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Changing the narrative #2

In the second post of this series, I discussed the public perception of ME patients and the illness itself. The challenges of dealing with the media, primed to criticise the ME community and operating in a rapidly-changing environment, were also considered. I reflected on some of the difficulties relating to the necessity of defining groups in relation to the community and the self-evident internal and external tensions.

Reports from episodes in the community’s troubled history involving allegations of abusive behaviour were examined. These included a specific case study concerning the targeting of a founder member of the biopsychosocial (BPS) model of health for ME patients (a model which promotes inappropriate and dangerous treatments for the illness). The consequent, heavily-biased media coverage of those allegations caused serious and long-lasting damage to the ME community.

A suggestion of how that situation could have been addressed at the time by the issuing of a joint media statement on behalf of the community was proposed. The fact that this did not happen may have enabled the legitimisation of a narrative which continued to demonise ME patients. The BPS group may have been handed the ammunition by a small number of extremists but community representations were insufficient to prevent it being used over and over again.

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DUE PROCESS AND ENGAGEMENT (not as boring as it sounds)

Due process is at the heart of this blog; its sub-heading is “Law and Health: due process and civil society”. How we handle our dealings with governmental departments, public/private bodies and media/civil society organisations is of vital importance because it reflects back on us both collectively as a community and in terms of the progress we may or may not be making.

Given that the main purpose of this series is to consider the reputational issues surrounding the ME community and their consequences, it may be helpful to examine the dialogue between the community and the institutions.

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Public engagement

To start on a positive note:  Carol Monaghan, SNP Member of Parliament for Glasgow NW has secured a backbench debate in the Chamber of the House of Commons on Thursday 24 January 2019 in the afternoon. Ms Monaghan has previously led two Westminster Hall debates on ME issues in 2018. For more detail, including the wording of the motion, see here. The debate should be available live at parliamentlive.tv

[Update 25 January 2019: Hansard transcript of parliamentary debate here, YouTube video 1.5 hours long here]

The ME community frequently has an uphill struggle in its engagement with the various branches of state which carry out the administrative processes of daily life (health, education, social care, housing etc.). As things stand, the prospects of changing the status quo are therefore lower than they should be. In spite of the enormous effort put in by many within the charities and patient groups, meetings and activities appear to remain comparatively low-key and senior level engagement less than ideal.

This is not to deny that progress has been made and meaningful outcomes are achieved.  Nevertheless, the resources required for improving the very poor quality of life of the 250,000 people living with ME are far below where they should be, given the economic disease burden. Estimates of that burden vary considerably eg. £3.3 billion and £6.4 billion but UK public funding for biomedical research remains derisory, according to this masterly obfuscation of facts. Progress in securing resources and appropriate (ie. non-psychosocial) research for ME patients is far behind where it should be.

The ME community in the UK still does not have its rightful place “at the table” of public engagement. A renewed approach to strategic communications could facilitate a more streamlined process for furthering the interests of patients.

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Direct patient engagement

From time to time, comments appear on social media about individual complaints to various institutions (such as NICE, the National Institute for Health and Care Excellence) being knocked back and interpreting this as a potential conspiracy against the complainant or the group they represent. Whilst the conspiracy theory may be accurate, the more usual reasons for complaints being rejected is the failure to follow the prescribed process or administrative incompetence.

Government bodies and most public/private institutions are required to have a formal complaints and/or appeals procedure. Unfortunately, these are frequently (and, some might argue, deliberately) very difficult to access and inherently opaque, laborious and time/energy-consuming. However, unless the full internal procedure is followed closely – often involving many stages of escalation – it is inevitable that the complaint/appeal will be rejected.

If a full internal complaint/appeal process has been completed and the matter remains unresolved the complainant can then consider applying for a judicial review of the decision of the relevant body by a High Court judge or, in cases where there is a statutory route in force (such as freedom of information requests), appealing to a Tribunal.

The judicial review route

This is a complex, lengthy and potentially expensive process. It is not possible to take this route until the full internal procedure of the relevant body has been exhausted. Missing out any of the earlier stages means that the application will be knocked back immediately. Judicial review is not automatic as of right and strict criteria must be fulfilled.

The first stage is to apply to a High Court judge for permission to launch proceedings. The judge will consider the merits of the case and either grant or refuse permission. Many applications fail at this stage as the threshold has become much higher in recent years to reduce the previously increasing number of unmeritorious applications. If permission is granted then the case can proceed.

The Tribunal route

This process applies in cases such as requests made under the Freedom of Information Act (FOIA). In 2015, in response to a request from two journalists, I wrote a short guide to the FOIA process which can  be found here.

I have followed various procedures to pursue complaints or get further information, sometimes successfully, frequently not. I know how taxing they can be. Examples of my work can be found elsewhere on this blog, relating to the so-called “Secret Files” on ME, Karina Hansen, the PACE trial and the NICE guidelines review.

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Whilst the above processes apply to the UK, most countries which follow the rule of law have similar systems in place. The viewing statistics from this blog show that the majority of readers (though not all) are in countries which observe some form of democracy and democratic process. Unfortunately, the number of countries worldwide which do follow democratic principles represents a minority; many states fail to reach the standards agreed by the international community to qualify as full democracies.

The problem with the democratic process is that it is, by its very nature, slow, cumbersome and frustrating. The checks and balances required to be carried out, the plodding nature of the judicial process, parliamentary procedure and the application of executive powers can reduce progress to a snail’s pace. It may appear to be deliberately obstructive (and my experience is that sometimes that is indeed the case) but the most common reason for delay or absence of response is either lack of resources or it’s just a SNAFU.

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What can we do now?

In order to move forward at an accelerated pace, it is necessary to think big. Highly activist campaigns such as breast cancer and HIV/AIDS can provide models of scope but their trajectories and patient profiles are very different. Unlike patients with those diseases, by the time someone is diagnosed with ME they may have become too disabled to campaign effectively.

As there is still no universally accepted diagnostic biomarker for ME, family/friends/employers/schools/local authorities etc. may be in denial about the patient’s illness and therefore unsupportive or actively hostile.

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ME as an illness is several decades behind where it should be in terms of recognition and treatment. It is therefore necessary to consider what might have been impeding progress, take stock of the current situation and consider where the patient community might choose to go from here.

This includes reflecting on past difficulties and how to avoid them in the future, looking at who currently controls the narrative and debating how that could be adjusted. The overwhelming imbalance between the group which currently controls the story and the ME patient community must be addressed.

Any action plan should not include going back and trying to correct all the damaging stories of the past for the simple reason that it would be an impossible task. However, the community needs to be better prepared to address negative publicity – past, present and future – which may still arise.

If the ME community were to begin steering the narrative from its own firmly-established platform, then the focus for media contact should shift away from the Science Media Centre’s BPS-led bias and move towards a more patient-led agenda. This approach would incorporate (amongst other things):

  • Exposing the shocking treatment of patients over many decades, including ME-related deaths, illness denial and serial abuse of patients both medically and socially
  • Highlighting the long history of an untenable lack of public funding for biomedical research and the impact of this policy on patients’ lives
  • Explaining the progress which is being made in international research, in spite of the lack of resources, and the need for greater UK participation in that research
  • Setting up a recognised platform from which to counteract the negative publicity generated by hostile and/or ill-informed parties

If handled correctly, this should gradually create the impetus for a complete culture shift at every level – political, medical, social and popular.

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It’s easy enough to set out a simplified pathway in order to address the issues and create a new narrative. The real challenge is how to tackle the innumerable obstacles which immediately become apparent and manage them through a long-term, successful campaign. It’s vital to remember that a communications strategy is based on a pragmatic approach to how the world actually is, not a wish for how it should be.

A SIMPLIFIED PATHWAY 

  1. Create a media steering group constituted by a coalition of representatives from the main patient organisations in the UK
  2. Obtain funding by inviting those organisations to donate to a seed fund in order to engage a professional fundraiser. The fundraiser should raise the fund to a realistic amount* for appointing a strategic communications consultancy for a minimum of three years
  3. Carry out a search for an appropriate consultancy which is competent to take on this representative grouping of the ME community as a client
  4. Brief the consultancy on the basis of a) advising generally on media, communication and lobbying strategies and b) addressing the wider reputational problems faced by the community
  5. Establish an easily-accessible centralised media point of contact for dealing with day-to-day enquiries. An identifiable media spokesperson (with a back-up) should be in place as soon as possible.

*Costing out the process is not possible as yet but a substantial amount would be required. It may be desirable for the organisations which decided to become involved to review their spending commitments and adjust their priorities accordingly.

Some challenges

The constitution of a media steering group is likely to be the biggest challenge of all. The lack of coordination amongst existing groups has been a major stumbling-block to progress. The media steering group should be a newly-formed body, not an add-on to any existing group.

A request for unity in the ME community would be naive and unrealistic but, unless some level of compromise is accepted, it will be impossible to achieve a mandate with which to proceed. Collective responsibility does not mean that everyone agrees on the issues but that a pragmatic consensus must be attained in order to move forward.

Funding is always one of the biggest challenges for any charity or interest group. This 2012 article “Disease Politics and Medical Research Funding: Three ways Advocacy Shapes Policy” gives some useful insights and may be helpful in shaping a funding initiative. In the “Results” section it states the following:

Increases in the number of nonprofits and lobbying expenditures are both significantly associated with increases in research funding, with each $1,000 spent on lobbying associated with a $25,000 increase in research funds the following year.

The search for an appropriate consultancy is less of a problem. Research combined with the knowledge and experience of community members should provide sufficient information to draw up a shortlist of suitable candidates.

Briefing the appointed consultancy is one of the most important stages in the process. The success of the consultancy’s work can only be as good as the briefing it receives. It’s very much a GIGO situation so must be handled with skill and expertise.

Establishing a centralised media point of contact is a logistical matter rather than a major obstacle. A centralised contact point does not need to interfere with local arrangements by local groups but should create an recognisable hub for all national media enquiries. Recruiting a competent spokesperson/figurehead is a challenge but one which must be addressed using community skills and experience.

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Changing the narrative?

An important step in changing the narrative is to reformulate the language relating to ME. The community has been forced into a defensive attitude for decades, largely as a result of the stranglehold by the powerful psychiatric lobby from the 1980’s onwards and the consequent undermining of community power. This reformulation of language can operate at all levels, privately and publicly.

A simple example is to apply an assertive approach to conversations about the illness, starting with something as simple as refusing to engage with a dialogue whose premise is whether or not ME is a “real”  or “disputed” condition. Substituting that conversation with one involving a pre-prepared simple description of the illness and reference to the ever-increasing body of international research can facilitate a more constructive discussion.

In this January 2019 critical review of research methods, the authors state the following in their conclusion which, in research terms, echoes what I have thought for many years:

The ME/CFS [sic] research field has been stuck in a somewhat defensive posture, with a focus on demonstrating “this is a real condition” by showing significant biological differences between patients and controls………The field is ready to move past proving “this is a real condition” and to start elucidating the specific relationship of ME/CFS symptoms to neuroinflammation……….Moving past a defensive posture and toward understanding pathophysiology requires careful focus on research methods.

Conclusion

The questions posed in this series are the ones which we now need to address with some urgency. Who will steer the story of the ME community from this point onwards, how will we be judged in the future and can we, by default, allow the current narrative to continue to prevail? It’s not uncommon for a new campaign to take twenty years or more from inception before it begins to achieve meaningful results. Whilst the ME campaign story is not new, it lags way behind its rightful place in history.

Our fate lies in our own hands – individually and collectively. There never is a “magic bullet” – life is far more mundane than that – but methods exist which have yet to be tested. My purpose in writing this series is to raise the possibility of pursuing those methods and considering some of the challenges which would have to be faced. The rest will become history.

How that history looks in ten, twenty or thirty years’ time will depend on the choices and decisions we make now. It’s unlikely this series of posts will change the course of that history but an examination of the issues raised here has been long overdue.

It’s time to change the narrative.

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Changing the narrative #2: warring factions, divide & rule and death threats

January 14, 2019

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 

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Normans_Bayeux

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Introduction

This is the second part of my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). A full list of this series of posts can be found here.

This is a very long post (3900 words, including the Re-cap) but it is one that is better kept as a single piece rather than separated into two shorter posts. As usual, I have split it into several different sections after the Re-cap; it then falls naturally into a Section A and a Section B which are clearly marked. I hope this will make it easier to read for those who, like me, experience cognitive challenges as a result of ME or any other condition.

Despite the international reach of the internet, each geopolitical region still faces its own unique set of challenges when it comes to healthcare and related matters. This series of posts focuses on the situation in the UK. However, some of the links use references from other countries because the general principles remain the same, whatever the specific local considerations may be.

The Brexit frenzy continues…….

It’s hard to explain to those outside the UK just how profoundly the ongoing Brexit chaos continues to affect every aspect of public and private life here. I think it’s fair to say that it’s unrealistic to expect much sense from any of our institutions or government departments for some time to come. 

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Re-cap

 For new readers or those needing a reminder, this is a summary of the first post:

I started writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only then to abandon them because the subject-matter is complex and contentious. While I have written about the topic as part of many other posts, I have never published a post which was devoted to this subject alone – until now.

The question is this: how should the myalgic encephalomyelitis (ME) community in the UK address its reputational problems within the media environment and the wider political, medical and social context?

As regular readers of this blog know, I have lived with the illness ME, in varying degrees of severity, since 1981. The stigma attached to the illness and the treatment of many patients in most countries is shocking, despite occasional official platitudes purporting to demonstrate real concern about the situation. Sometimes these official pronouncements appear to be genuinely well-intentioned. In fact, they usually represent an unsupportable denial of the illness’s history and its profound effect on the lives of millions of patients worldwide.

The history of this illness – which has probably existed for centuries and been well-documented since the 1930’s – reveals a pattern of scandalous behaviour towards patients by the very agencies which should have been most alarmed at the recorded outbreaks in many parts of the world. It also exposes a chilling lack of respect and compassion for those who have lived with the illness for months, years or, in many cases, decades.”

In the film“Unrest”  , director Jennifer Brea says: “You can disappear because someone is telling the wrong story about you.” Sadly, this is only too true – but it does not need to be the case. The status quo can be changed if the process of how to achieve that is better understood. Most of what I say here has been said before by different people at different times in different places – but perhaps not in quite the same way as I express it here.

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SECTION A

Dangerous? 

Some years ago, I was discussing the media coverage of ME patients with a friend. He was not inherently unsympathetic but his knowledge of the illness and its history was confined to the standard, mostly negative, media stories (we hadn’t discussed the subject previously in any detail). In his case, the media aspect was particularly relevant as he was closely associated with the now-defunct Press Complaints Commission (PCC)

It emerged during our discussion that ME patients were a PCC nightmare. The main groups which the Commission considered to be the most dangerous were animal rights campaigners, climate change activists (at this time, the extreme activists were still regarded as highly dangerous) and ME patients.

According to my friend, ME patients were amongst the most vocal groups who were creating major problems for the Commission at that time. The serial complaints made by the community about press coverage were found to be mostly unsubstantiated and, by extension, causing harassment to members of the Commission. Moreover, the perception of ME patients was of a disaffected, highly-organised and potentially violent group, in pursuit of its own misguided agenda.

My friend was a well-informed, media-literate, highly-regarded academic and not an unsympathetic person. However, the fact that this was his perception of the ME community was – and still is – a sobering reminder of how much work needs to be done to repair the damage from decades of entrenched stigma and neglect.

The PR offensive against the community has been sublimely effective. There is an enormous task ahead if we are to turn that around and change the narrative.

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 The warring factions

Defining and identifying the various “factions” in ME history is almost impossible but must be attempted for any of this to make sense. It is an entirely artificial construct but a necessary one for me to continue writing.

For the purposes of this post, I am devising an informal taxonomy of some of the groups which feature in this discussion. It’s important to note that the list is not intended to be exhaustive and the defined groups have wildly overlapping and constantly shifting boundaries. They are:

  1. The “ME community”: patients who have been sick for a long time (usually 10 years +) with a small group of supporters and healthcare providers who are very familiar with the nature and history of the illness.
    These patients have symptoms which fit most closely with the ME International Consensus Criteria (ME-ICC) although they may have been diagnosed under another name (see group 3 below). This is the group which I refer to loosely as “the ME community” [full disclosure: I am in this group].
  2. The “BPS group”: the majority of healthcare providers, associated professionals and their supporters whose philosophy of the illness is based on (though not exclusively) the biopsychosocial (“BPS”) model of health.
    The BPS model of health has been particularly unhelpful to ME patients as it focuses attention on the psychological and behavioural approaches to treatment ie. Cognitive Behavioural Therapy and Graded Exercise Therapy. This has the inevitable effect of diverting resources away from desperately-needed biomedical research into causation and treatment. It can also encourage patient-blaming (“if you really wanted to get better, you could”) and has the additional effect of demeaning patients’ experiences in public perception. This approach can be loosely categorised as the institutional or preferred “establishment” belief.
  3. “CFS+”: Those diagnosed with “chronic fatigue syndrome” or CFS and their supporters. The name of the illness is highly controversial.
    Until the late 1980’s, variations of the term myalgic encephalomyelitis/ME were in common usage. However, in 1988, the term “chronic fatigue syndrome” was introduced by a working group from the United States Centers for Disease Control and Prevention, thereby hugely amplifying the controversy and confusion surrounding both illnesses. Other countries (including the UK) adopted the term, increasing the chaos and inflaming the debate. Because many healthcare practitioners were – and still are – unfamiliar with the ME-ICC (see 1 above) many patients diagnosed with CFS may, in fact, have ME – and vice versa. As there are many different names associated with the condition (which affects approx 20 million people worldwide) and around twenty different sets of diagnostic criteria, accurate identification of who has what is challenging and frequently misleading.
  4. “Others”: the group represented by everyone else, including patients, non-patients and the sick who are as yet undiagnosed.
    This group is very fluid and not really a “faction” as such but can become embroiled in arguments on any side of the debate.

Many will not agree with my way of identifying the “warring factions”. I don’t like it myself but, without some attempt at providing stated terms of reference, I cannot continue to write these posts.

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There are often comments on social media to the effect that the ME community is losing the PR battle against the BPS “brigade”. However, the ME community is not actually losing this PR battle with the BPS “brigade” at all – for the simple reason that we are not even in it. Of course, there are constant skirmishes on social media (Twitter especially), and occasional rebuttals against negative publicity are proffered but the idea that the ME community has a coherent strategic approach which is being put into practice by an organised battle group is wishful thinking.

Without power

The community’s detractors, including the BPS group, need to do very little because, at the moment, the community itself has precious little power. It has no clear strategy, few resources and minimal credibility. And, without power, the community has no platform from which to speak or defend its position.

In the current political and cultural climate, the balance of power is so heavily loaded in favour of the BPS group and against the community that the occasional skirmish or defensive rebuttal cannot even begin to tip the scales. There is simply no effective opposition.

Divide and rule – by media 

The BPS group continues to express carefully-timed sympathy for “ME/CFS” (the unhelpful conflation of ME and chronic fatigue syndrome) patients and pays occasional lip service to concerns about the lack of biomedical progress. They even come out with the occasional study which apparently examines some aspect of immune dysfunction, such as the December 2018 Psychoneuroendocrinology paper which I mentioned in my previous post. In fact, the study was really looking at “fatigue” rather than the immune system and was of little consequence for ME patients.

These final master strokes of biomedical observance by the BPS group sweep up a few more outliers. These can include recently-diagnosed patients and their families, easily-influenced healthcare professionals, politicians, interested members of the public who find it easier to blame patients than support them – and those potentially inside the ME community who find themselves in uncertain or conflicted states.

The ME community is rendered powerless again, before the battle has even begun. Internally, it remains fractured and fractious; members of the community can turn on each other with alarming frequency and ferocity, ably supported – as in all such environments – by the platforms of social media. The strategy of “divide and rule” has never worked better. The ME community is well on its way to becoming an unwitting casualty of a “Duchin”-type strategy aimed at eliminating grassroots activists.

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I have seen comments from the community that the media could in some way “save” the ME community from the undermining effects and negative campaigning of the BPS group if journalists were doing their job properly. The way things are at the moment, this isn’t going to happen any time soon. I suggest three reasons for that:

  1. The media (however one chooses to interpret that particular term) no longer constitutes an identifiable, self-determining entity. Those days are long gone. There are vestiges of real, investigative journalism in some media outlets but they are rare. Old-style campaigning journalism is now an expensive luxury and therefore difficult to justify in today’s fiercely competitive environment where news can travel around the globe at the click of a mouse – and be updated within seconds.
  2. The media are – and to a large extent always have been – merely a conduit for whatever is channelled into them. The subsequent outflow is frequently subject to little or no filtering. The stranglehold of the BPS group on the current narrative surrounding the illness and the patient community is therefore pretty much a done deal. This is what needs to be changed – robustly, pro-actively and on a much bigger scale than anything previously attempted.
  3. The rise of social media has thrown out the original rule book. The success of “fake” news and covert manipulation, alongside the sacrifice of “old” journalistic principles to feed the hungry new business models, has created a recalcitrant beast roaming through a constantly shifting landscape. At this point, a much, much smarter approach to strategic communications is required.

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SECTION B

Death threats and harassment

Anyone connected with the ME community is likely to be aware of the many and varied accounts of death threats, abuse and other forms of harassment meted out to doctors, researchers, healthcare employees and journalists by “activist” members of the community.  These stories have spiralled, largely unchecked, in the last ten years, (example here) particularly in response to the publication of, and reaction to, the PACE trial in The Lancet in 2011 and the ultimate failure to establish the XMRV virus as a direct cause of ME at around the same time.

The targets of these actions have mostly been those connected with the BPS group. The amount of media coverage and listed allegations is vast. It is therefore an impossible task to collate and examine them all here. However, both the nature of the allegations and the proliferation of stories about them have always troubled me and I have, over the last few years, done some research into their veracity.

It is quite clear that many, probably most, of these stories are founded on fact. What also appears to be true is that the huge amount of media space devoted to covering them is wildly disproportionate to the behaviour which was actually experienced. Much of what is said is anecdotal and therefore difficult to verify. I have also been given some evidence in strict confidence which I therefore cannot publish to support my assertions.

It would be impossible for me to document everything I have looked at (it would need a whole other series of posts) and there will be plenty of other material which I haven’t seen. Nevertheless, my research leads me to believe that the accounts of death threats and harassment are, for the most part, based on truth and to pretend otherwise is to remain in denial of the less palatable aspects of ME activism.

What is also patently obvious is that the stories were massively over-hyped and it’s likely that some people may have jumped on the harassment bandwagon and embellished the facts in order to ramp up the anti-ME patient rhetoric. Whilst that is viciously opportunistic and unethical behaviour, even the smallest grain of truth at the heart of the story gave those involved unlimited licence to continue to propagate it further.

Of course, there has been some pushback from members of the ME community via rebuttal statements from the ME charities/patient groups and responses from individuals in the comments sections of the publications involved (although those sections are sometimes closed or heavily-moderated, such is the community’s reputation). However, the abiding impression is of an angry mob with too many activists indulging in excessively hostile campaigns towards the very people who are – apparently – trying to help them.

Whether or not that impression is true isn’t the issue here. What does matter is, as I said earlier in this post, that “the ME community is not actually losing this PR battle with the BPS group at all – for the simple reason that we are not even in it…….In the current political and cultural climate, the balance of power is so heavily-loaded in favour of the BPS group and against the community that the occasional [social media] skirmish or defensive rebuttal cannot even begin to tip the scales. There is simply no effective opposition.”

At this point, it is helpful to remember one of the first rules of therapy: until a problem is recognised and acknowledged, there can be no possibility of beginning to solve it. 

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BUT…….is the boot sometimes on the other foot?

From time to time, I come across passing references to shadowy “establishment”-type figures who have threatened and warned off doctors/scientists who are working/planning to work on biomedical research into ME (or CFS); it appears that sometimes these threats have been successful. However, those who mention these attempts to threaten them are usually unwilling or unable to explain further or give any more detail so it is not possible to investigate or verify these allegations.

If anyone has any hard evidence on this subject and would like to get in touch with me (in strict confidence), then my contact details can be found in the About section of this blog.

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Case study: the online video 

The story

In 2011, Professor Sir Simon Wessely known to many in the ME community as a founder member of the BPS group, spoke about the death threats he claimed to have received and the harassment that he, and others, had experienced. The story was chronicled in many publications, such as here and here. As always, a vague attempt at “balance” was made in allowing a sliver of space for comment from the ME community but the clear intention was to perpetuate the story about these militant, frightening, ungrateful patients. It succeeded brilliantly.

Professor Wessely and others probably received a degree of abuse and threats from more than one source. One in particular consisted of a video directly specifically at Professor Wessely and which was posted online. My information on timing is limited so the exact date is unclear but it would have been somewhere between 2009 – 2011. It appears that after the video was uploaded a complaint was made almost immediately. As a result, it was taken down very quickly.

A copy of that video was sent to me in strictest confidence in early 2017. [Edited for clarification: the source of the video was known but that information has to remain confidential]. It was one of the most deeply disturbing things I have ever witnessed. For reasons which will become apparent, I’m not going to attempt to describe it but it was utterly chilling both in its content and in the high quality of its production. It was clearly made by someone with exceptionally competent technical skills; this carefully calculated presentation only served to make it even more menacing.

This video contained abuse and threats which were completely credible. It was not made in the heat of the moment but over a period of time. It was aimed at a high-profile public figure whose whereabouts could easily be tracked. It therefore constituted a very real risk to the person to whom it was addressed and also, by extension, others who espoused a similar professional approach.

Back to credentials again (see Changing the narrative #1):

I qualified as barrister in 1987. I worked as a criminal lawyer for twelve years, including nine years with the Crown Prosecution Service (CPS). I have been accustomed to reviewing all kinds of evidential material over the years including shocking, offensive and obscene videos and making decisions on whether or not criminal proceedings should be brought against putative offenders. 

Legal consequences…..

Professor Wessely said in an interview that he took legal advice as a result of the threats received. I don’t know the outcome of that advice (it would have been given in confidence) nor whether the matter was referred to the CPS for a decision on whether or not to charge anyone with a criminal offence. As far as I’m aware, no further action was taken on that front.

…..And the prosecution test

What I can say, in view of what I saw, is that had I been the reviewing lawyer of the video, I would have given serious consideration to prosecuting the originator. There was sufficient evidence to support charging that person with more than one criminal offence.

For a prosecution lawyer, the process of considering a charge is a two-stage test: the first stage is whether or not there is sufficient evidence for a realistic prospect of a conviction; if that first test is satisfied, then the second stage is to consider whether or not it is in the public interest to proceed. In this instance, given the confidential background details which were passed on to me, the answer to that public interest test would probably have been “no” so the person responsible for the video would not have been charged.

I must stress that this scenario is purely hypothetical on my part. I don’t know whether or not the matter was ever referred to the police and the CPS.

Practical consequences: increased security and open season for the media

As a result of the threats and other abusive actions, Professor Wessely was given extra police security for some time, as were others who worked in the field. Given what had happened, this does not seem a disproportionately alarmist response although it has been criticised by some members of the ME community. Had I been the target of such behaviour, I would have been extremely concerned for my own immediate safety and that of those around me.

And, of course, the media had a field day, as we already know. Yet again, the ME community was pilloried and vilified. Some attempts were made to stem the tide and limit the damage but with little success. Again – too little, too late.

So what should the community have done? 

Given the circumstances at the time, the options were limited. What should have happened is this:

  • Having confirmed the existence of the evidence, a joint media statement should have been issued very rapidly through a collaboration of the main charities and patient groups, ideally through an identifiable spokesperson.
  • The statement should have condemned the death threats unreservedly, along with any other clear evidence of harassment, and indicated that the charities and groups would continue their vital work on behalf of the community. If such a statement was made at the time, I have found no sign of it.
  • The community needed to distance itself from such extreme behaviour in order to re-establish its position as a credible entity. Extreme activism must be marginalised otherwise the moral high ground is surrendered to the other side.

Failure to take this course of action enabled the legitimisation of a narrative which demonised the entire patient community.

Whatever the BPS group has done and continues to do, abusive and threatening behaviour is never justified. If such actions are condoned, actively or by default, the community instantly loses its integrity, no matter how vulnerable or disadvantaged it may be. I say that without hesitation as someone who has lived with this illness for nearly four decades, experienced significant abuse and loss as a result, and fully expects to die before an effective treatment or cure is found.

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Freedom of expression is not an unconditional right. It comes with responsibilities and limitations according to law. Are the fundamental rights of ME patients being stomped on on a daily basis? Yes, of course they are – but, as things stand, we would have an uphill struggle proving that. We first need to re-establish our visible presence, our commitment and, above all, our integrity.

The way to do that is to acknowledge the unpalatable actions by ALL parties involved in this history and begin to consider how to move forward in a smarter, more constructive manner. 

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The third and final part of this series “Changing the narrative #3: due process, engagement and a pathway (magic bullet not included)” will follow soon.

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Changing the narrative #1: exploring a new approach to strategic communications in the ME community

January 7, 2019

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 

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Introduction MEdiaPic

This is the first of a series of posts on this topic. A full list of the series can be found here.

I started writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex and contentious. Whilst I have written about the topic as part of many other posts, I have not published before now a series of posts which was devoted to this subject alone.

The question is this: how should the myalgic encephalomyelitis (ME) community in the UK address its reputational problems within the media environment and the wider political, medical and social context?

As regular readers of this blog know, I have lived with the illness ME, in varying degrees of severity, since 1981. The stigma attached to the illness and the treatment of many patients in most countries is shocking, despite occasional official platitudes purporting to demonstrate real concern about the situation. Sometimes these official pronouncements appear to be genuinely well-intentioned. In fact, they usually represent an unsupportable denial of the illness’s history and its profound effect on the lives of millions of patients worldwide.

The history of this illness – which has probably existed for centuries and been well-documented since the 1930’s – reveals a pattern of scandalous behaviour towards patients by the very agencies which should have been most alarmed at the recorded outbreaks in many parts of the world. It also exposes a chilling lack of respect and compassion for those who have lived with the illness for months, years or, in many cases, decades.

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Changing the narrative

In the film“Unrest”  , director Jennifer Brea says: “You can disappear because someone is telling the wrong story about you.” Sadly, this is only too true – but it does not need to be the case. The status quo can be changed if the process of how to achieve that is better understood. Most of what I say here has been said before by various people at various times in various places – but perhaps not in quite the same way as I will express it here.

I have discussed this subject on a regular basis in many of my blog posts over the years and in debates on social media. What has become clear during those exchanges is that there is a very wide range of interpretations of what constitutes a media strategy and a fair amount of misunderstanding – not to mention disagreement – of how it might be undertaken. That is what needs to be addressed.

Because of its very nature, this is a topic which can only be explored on a country-specific basis. Despite the international reach of the internet, each geopolitical region still faces its own unique set of challenges when it comes to healthcare and related matters. However, some of the links in this post use references from other countries because the general principles remain the same, whatever the specific local considerations may be. This series of posts focuses on the situation in the UK.

What are my credentials?

It’s only fair that, as I’m holding myself out as someone who is qualified to express a view about this topic, that I explain what my credentials are. There is a brief reference in the About section of this blog (in addition to the summary of my legal career) which needs expanding:

“My background also includes experience in media relations, journalism…..” This half sentence is an extreme reduction of a number of years of experience, encompassing five years with an international PR consultancy, some ad hoc freelance journalism (including former membership of the Institute of Journalists) and, more recently, expert knowledge of media law/reputation management. I am not simply making this up as I go along.

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Overview

The UK’s ME community urgently needs a complete overhaul of its communications strategy. As part of that, a media/reputation management plan should be put in place to head off further damage and generate a new and more accurate representation of the narrative surrounding both the illness itself and the patient community. This is absolutely essential and decades overdue, not only because of its obvious intrinsic benefits but also because, if done correctly, it will permeate through and create change in every area related to developing effective treatment for the illness and respectful treatment of patients.

Every successful campaign to raise awareness about any issue has sought and received high-level expert advice on how to go about it – for example, the highly successful breast cancer awareness movement. Increased public awareness of particular issues doesn’t just appear from nowhere; it is carefully orchestrated, funded and planned, often over many years. We know from looking at recent history that the right strategic approach can bring about positive changes in public perception of an illness and begin to marginalise its detractors (as opposed to it being the other way round, as is the case with ME at the moment).

If handled correctly (and I can’t emphasise that enough), the effects of such a campaign will filter through and begin to change attitudes towards investment in medical research, appropriate healthcare provision, social care for those disabled by the illness and the handling of health-related insurance claims. Obviously, funding is a major hurdle to be overcome; more on that in a later post.

Not just “a bit of PR” 

It also needs to be emphasised that I’m not talking about just “a bit of PR”. That is already undertaken by some groups and charities who are to be applauded for continuing with this thankless task. Nor am I talking about more individual patient stories appearing in the media. Both of these approaches have been going on for the last few decades and, while they have their value, it’s quite clear that without a proper long-term collegiate strategy, they cannot address the bigger problems of how ME patients are viewed and the absence of sufficient political will to address the situation.

Many people look to the history of HIV/AIDS campaigning for a useful comparator with the ME situation. In fact, the trajectory and patient profile of the two illnesses and their stories are very different; comparisons between them do not yield much in the way of meaningful assistance. I know many will disagree but I simply refer them back to where the ME community currently finds itself at the beginning of 2019, in stark contrast to the position of the HIV/AIDS community.

The ongoing review of the NICE guidelines 

This review by the UK’s National Institute for Health and Care Excellence commenced in 2017 and is long overdue. However, the process will not be completed until October 2020 by which time more ME patients will have died and many others will continue to experience unrelenting suffering without recognition, support or treatment.

The early indications from the NICE review of any real progress towards a significant shift in attitudes are not promising (edited 13/1/19 to add: although the recently-appointed Director of the Centre for Guidelines, Paul Chrisp, seems to be showing a more inclusive approach, according to these minutes from November 2018.) This is yet another example of an area in which the overall narrative surrounding the illness and those living with it urgently needs recalibrating. The “wrong story” theme persists doggedly and infiltrates every single aspect of the political, medical, social and cultural landscapes.

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Sexism and science in the ME community

I can report from my own experience and observation that sexism is alive and well in the international ME community. Given that this is a patient cohort which consists largely (though not exclusively) of women, that is particularly disappointing. Reported ratios vary but common estimates suggest that somewhere between 60% – 80% of ME patients are female. However, my perception is that this gender ratio is not properly reflected amongst the higher profile advocates and activists in the community.

This is only a broad generalisation based on my own subjective observations but, however unpopular it may be, I suspect there are others who may recognise this pattern.

Quite apart from the distressing nature of the treatment experienced by some women (probably as a result of unconscious bias rather than anything more sinister), there is another serious point here. The predominant focus of many male advocates/activists is to expand and improve on the scientific research targeted directly at solving the illness. Obviously, the only way through which we will establish causation, biomarkers and treatment for the illness is by continuing to research them, so of course this is a vital aim. Nevertheless, on its own, science is not enough, as is already apparent.

As I’ve said before in “Pause-Review-Reflect: towards a bigger picture“, we need to step back and consider the bigger picture of how best to address the reasons why we are so far behind other illnesses of similar controversy and/or vintage, such as multiple sclerosis or epilepsy. Scientific research is only one component of a much wider framework which requires the development of a political, medical and social context in which to flourish. This can only be realised through a customised and far-reaching strategy which faces squarely up to the reputational problems faced by this community.

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A note on Brexit

It should be noted that in the UK, while the Brexit battle is still raging and likely to continue for the foreseeable future, all types of resources (especially research funding and meaningful parliamentary time) are in even shorter supply than usual. That is another challenge which needs to be met – and we are in completely uncharted territory with this one.

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Why am I writing this post now?

Some will argue that there is already considerable progress. Yes, there is – but it is painfully slow and a step forward is all too often accompanied by a step backwards. Others will say that there are sinister forces abroad which deliberately obstruct that process and manipulate the media accordingly. Probably also true – and all the more reason why those in the ME community who feel disadvantaged by the current state of affairs need to work in a more intelligent fashion towards changing the prevailing establishment culture.

Four years ago, I wrote this in The Secret Files Unwrapped: Part 1 – the importance of fair and accurate records:

The complete absence of a visible patient narrative became painfully evident last week. The…British media’s wilfully ignorant coverage of ME patients’ perceived “fear of exercise” gave the headline writers a field day (examples here and here). Journalists appear to have regurgitated mindlessly a press release from the Science Media Centre’s relentless propaganda machine and failed to make any responsible enquiry into the real story. Subsequent rebuttals from the charities limped in on the back foot; positive and corrective commentary was drowned out in the general furore; patients and supporters rallied but were all too late to the party.

Why? How could this happen yet again? Because it can…… Without such a [media] campaign in place, it will happen again; we will remain without a platform from which either to speak or to generate our own record for the archives.

I could have written the same thing only a few weeks ago. In December 2018a minor study in the journal Psychoneuroendocrinology was puffed up out of all proportion to its significance or relevance, again by the Science Media Centre in London. It purported to show new evidence that the immune system of patients with chronic fatigue syndrome/CFS (a term frequently and misleadingly conflated with ME – more on that in the next post) showed certain abnormalities.

National media spread the embargoed story following a press briefing three days earlier. Many hailed it as a breakthrough and positive news for the ME community. It wasn’t – but many who are unfamiliar with the history and politics of this illness, both inside and outside the community, might be forgiven for thinking it was.

The study used an interferon-alpha-induced model of “fatigue” in hepatitis C patients and then later applied the discredited Oxford criteria to define CFS-like symptoms in some of the hepatitis C cohort and, separately, a group of CFS patients. Abnormalities in the immune system of ME patients have been observed for decades so even if this study had used properly defined ME patients instead of modelled hepatitis C and CFS patients, it would hardly have been startling news that they had found immune abnormalities and/or primed dysfunction.

The study came out of the King’s College London stable which vigorously promotes the biopsychosocial approach to illness (more on that in the next post), a system which has caused infinite damage to ME patients over the years by promoting Cognitive Behavioural Therapy and Graded Exercise Therapy as helpful treatments for CFS patients.

Following the publication of that study and the predictable, ill-informed media hype, the need for me to start writing this post (and actually finish it this time) finally became overwhelming. I anticipate that it will take a series of three posts to complete an initial discussion of the issues and set out some of the problems which need to be tackled.

“Changing the narrative #2: warring factions, divide & rule and death threats” will follow soon. 

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My response to a statement from Aarhus University Hospital (Denmark) regarding a demonstration in New York City and a patient at the Hospital

October 22, 2018

Screenshot 2018-10-21 at 23.59.35

 

On 17 October 2018, Aarhus University Hospital (AUH) in Denmark published the following statement (link here):

News

We have been informed by Columbia University that claims and information about a particular patient are spreading on the social media, including that this patient has received treatment at The Research Clinic for Functional Disorders at Aarhus University Hospital, Denmark. These claims are unsubstantiated and include misinformation.

It is a deplorable case that has affected all involved parties deeply. However, we believe that most people will understand that because of duty of confidentiality, we are unable to publicly discuss a patient without the patient’s consent. Further, we find that it is disrespectful and a violation of a young woman to expose her suffering and making her illness history public domain. Even confidential medical information has been published on the internet. She has not approved to be a front figure in an ideological fight.

The Research Clinic for Functional Disorders is an outpatient clinic. In special circumstances, we share treatment responsibilities with other medical departments, which we did in this case. The admittance to a rehabilitation facility was an act of necessity according to Danish legal practice – a decision which The Research Clinic for Functional Disorders was in no way involved in and therefore cannot account for.

In Denmark, it would not be possible to carry out an action as described on the social media; it would be illegal. In connection with the admission, her parents have taken several legal actions in the courts, none of them having resulted in any negative critique of the treatment. Besides, the course of treatment has been scrutinized by an independent committee of the Danish Parliament, again without leading to any negative critique.

In general, we can inform that The Research Clinic for Functional Disorders has never treated any patients against their will or refused any patients to leave the department or discharge themselves. Thus, to postulate that I or any member of my team have violated human rights is outrageous. It is reprehensible to suggest that I or anybody in the clinic have initiated or contributed to children being removed from their homes.

Our clinic is a department at the Aarhus University Hospital, which has been rated the best hospital in Denmark in the past 10 successive years. Like any other medical departments in Denmark, we have to meet the highest medical standards and act according to the law and are continuously being supervised by The Danish Health Authority. We have received extremely few complaints from patients that have received treatment in our clinic.

The department, the research and the treatments we have developed since 1999 have proven very successful and are well accepted both by most patients and colleagues. Initiated by The Danish Health Authority, this has now resulted in the implementation of similar clinics for functional disorders in all Danish regions (see English summary on p. 6 in the report ‘Functional disorders. Recommendations for assessment, treatment, rehabilitation and destigmatization’, published by The Danish Health Authority, June 2018). https://www.sst.dk/da/udgivelser/2018/funktionelle-lidelser-anbefalinger-til-udredning-behandling-rehabilitering-og-afstigmatisering).

Per Fink, PhD, DMSc.
Professor, Head of Department

The patient mentioned in this statement bears a striking resemblance to Karina Hansen. Karina is a young Danish woman diagnosed with myalgic encephalomyelitis/ME and later forcibly removed from her family home by the state authorities (see the end of this post for a full summary of her story).

For the purposes of this post, I am assuming that it is Karina to whom Professor Fink’s statement refers. For a chronology of Karina’s case up until April 2016 see Karina Hansen 4: Timeline, Torture and Tragedy. Note that this post predates Karina’s release in October 2016 and the removal of her court-appointed guardian in October 2018.

As I have written extensively about Karina’s case in this blog, this is my response to AUH’s statement (usual apologies for the loss of formatting from this point on: one day I’ll crack it…..):

Veracity of information

The AUH statement says (amongst other things) that misinformation is spreading on social media. As is always the case with this form of communication, there are some instances where the information which is being circulated about Karina’s situation is misleading and/or incomplete.
The information in my blog posts comes either directly from Karina’s family or was already available publicly. According to her family, Karina herself wanted her story to be publicised. The rest of the material contained in the posts comes from my own research and analysis. I’m well aware of the legal issues involved.
In writing and researching my own blog posts, I rely on information given and received in good faith from reliable sources and I carry out due diligence in verifying everything I write as far as is possible.
Legal and ethical issues
My early posts about Karina deal with the legal issues surrounding her incarceration and how this was constructed and achieved. It’s quite true to say that, technically speaking, Professor Fink and his team did nothing overtly unlawful. However, the motivation and justification for their actions is less clear.
During the course of my research, my colleague, Robin Callender Smith, contacted Professor Fink and others at Hammel Neurocenter as well as the Danish Departments of Health and Justice. From the Clinic, only Professor Fink replied and in a manner which took the matter no further. His response is in Karina Hansen 2: the Ghost in the Room. The state departments acknowledged our enquiries but followed up with no more than standard formulaic responses.
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The ethical nature of the #MEAction demonstration in New York City on 20 October is a matter for the organisers. The demonstration concerned Professor Fink’s guest presentation at Columbia University’s annual Psychosomatic Conference. Ethical issues and legal imperatives frequently share common ground but they are separate entities and give rise to different considerations. Since Karina’s story has been widely publicised with the consent of her family then, legally speaking, the US organisers of the demonstration should have First Amendment protection (as would any speaker at the conference).
Privacy issues
In most European countries, privacy is governed by a combination of domestic law and practice within each state, the European Convention on Human Rights (ECHR) and the Charter of Fundamental Rights of the European Union. There is always an inevitable tension between the right of individual citizens to a private and personal life (ECHR Article 8) and the right to freedom of expression ie. the right to impart and receive information (ECHR Article 10).
As is always the case where competing interests arise, these rights must be considered together and a balancing act carried out. Karina voluntarily surrendered, through her family, her right to personal privacy concerning her illness in favour of discussing the broader issues which arise from it. It would seem that she believed – as I do – that, in certain circumstances, the public interest in open debate outweighs the counterbalancing need to preserve an individual’s personal privacy.
Levels of personal privacy protection in the US are much lower than the standards which are applied in European countries although patient confidentiality must always be considered in all jurisdictions. In the past, there have been public protests in Denmark about Karina’s situation where personal privacy is much more protected. To the best of my knowledge, no action was taken against the organisers.
AUH’s defence

Much of Professor Fink’s statement is self-serving in its defence of his actions and the University’s practices. I make no further comment on that.

Disclaimer
Nothing I have said in this statement should be taken as legal advice.”
Valerie Eliot Smith
22  October 2018
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KARINA’S STORY

Karina lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME).

[ME is a complex, multi-systemic neuro-immune disease; its controversial nature continues to cause immense patient suffering and distress. ME receives universally derisory state funding for desperately-needed biomedical research/treatment, despite having been accurately identified and described in the 1950’s and recognised as a neurological condition by the World Health Organization since 1969.]

ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model, often in combination with unsuitable psychotropic medication. Despite often extreme physical and cognitive impairment, patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no single universally agreed diagnostic pathway or treatment for ME – and definitely no cure, despite the claims made by some.

Inevitably, Karina’s diagnosis became the subject of a prolonged dispute. Her family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel Neurocenter, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.

Several doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink were in charge of her treatment at Hammel. Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will. Her condition deteriorated rapidly after her admission to the Clinic and shortly afterwards, she was found by the local court to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. 

Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.

During the course of 2016, I wrote a series of articles chronicling and analyzing Karina’s story from my perspective as a lawyer, a journalist and a long-time ME patient. On 12 October, I wrote a short update detailing the changes which were beginning to come about in Karina’s condition. Although she still could not speak, her ability to communicate with gestures was increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.

On Monday 17 October 2016, after three and a half years of incarceration, Karina was able to return home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs. The trial period passed without incident; Karina was home at last – but with a future changed forever.

In October 2018, Karina’s court-appointed guardian was discharged from her case and she finally regained control of her own health and financial affairs. She remains extremely ill. 

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Disclosure

I have lived with the illness ME since 1981. For more information see About.

 

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Karina Hansen news (updated: her guardian is discharged)* + a battle with NICE (the UK’s National Institute for Health and Care Excellence)

September 28, 2018

[NOTE: a brief personal update

Last year I went to live abroad. I wrote about this change in my February 2017 post PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version . As of September 2018, I am now UK-based again. While I was away, I continued my work assisting and advising members of the international myalgic encephalomyelitis (ME) community, in addition to the general research work which I have been doing for many years, some of which is reflected in this blog. My work goes on although it remains severely limited by health problems (I have lived with ME since 1981).]

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* KARINA HANSEN NEWS – updated 10 October

On 26 September 2018, a further court hearing took place in the case of Karina Hansen. Karina is a young Danish woman with severe ME who was forcibly removed from her family home by the state authorities and confined to an institution as a de facto psychiatric patient for three and a half years. She was eventually allowed to return home in October 2016. However, the local court had appointed a guardian in her case, because of misplaced concerns regarding her capacity to make decisions about her own health and finances.

The 26 September hearing was to determine whether or not the guardian should continue in his role or be discharged by the court. As often happens at court, the matter was adjourned until 10 October.

On 10 October, the court finally discharged the guardian from his duties in relation to Karina.

Karina has now finally regained control of her own health and financial affairs

For full details and the background to her story, see my previous post at Karina Hansen 8 (updated): the aftermath continues The full list of articles about Karina can be found in the Karina Hansen category in the sidebar of this blog.

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THE BATTLE WITH NICE

(This is quite long, at slightly over 4500 words, but it falls naturally into shorter subsections so I hope that the brain-fogged among us – of which I am one – will be able to read it in stages. That is how I had to write it).

NICE is the UK body which “provides national guidance and advice to improve health OtVmgpckQr25e6Xxl%PU8Aand social care.” It issues guidelines on the diagnosis, treatment and management of a range of illnesses. The last set of guidelines for ME (or “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” as it is currently calling the condition) was issued in 2007. This was a problematic time for the ME community, not least because of the failure of a judicial review (JR) of the CFS/ME [sic] guidelines review process. The JR was launched by two community activists and concluded unhappily in 2009.

The 2007 guidelines were due for update in 2017 but, initially, that review was postponed. Following pressure from the ME community, this decision was reversed and an update is now ongoing with the new guidelines expected in October 2020.

Some background observations

Earlier this year, I had an email discussion about the NICE process with another member of the ME community. In order to put a context around my subsequent exchanges with NICE (below), I’m copying some extracts from that discussion (my emails only, slightly edited for clarity):

February 2018  (in response to some questions)

The current incarnation of NICE was created by statute, the Health and Social Care Act 2012 (HSCA). It is governed by its own process as set out in the manual. There is very little flexibility about what it can do and how it can do it. NICE is not governed by any one specific area of law but by general public and administrative law practice and procedure, as are all public bodies. Likewise, the status of stakeholder has no legal basis as such. Any attempt to try a novel legal approach [on the process] would be risky in terms of costs and outcome.

Professor Mark Baker [the then outgoing Director of the Centre for Guidelines at NICE] will not be able to make any undertakings or commitments. That would be beyond his discretion and outside the scope of the NICE process. Even if he could, he could not bind any successor. It’s necessary to understand that, even if anyone at NICE did want to “help” the ME community more, they do not (officially) have the power to do so ie. even if they did, they would not be able to say so publicly.

I am the first to argue that ME patients merit special treatment, given the way we have been treated over many decades. However, the NICE process isn’t going to fix that. Without the benefit of a comprehensive, proactive/reactive media strategy aimed at radically changing the perception of both patients and illness (which would take a while) this will be a slow process [emphasis added].

Whether or not it’s worth engaging in the NICE process is an impossible question. I have argued that we needed an expedited review to prevent further harm [by continuing the current treatment recommendations] but the amount it can achieve is limited, as is the role of stakeholders. Trying to get NICE to accommodate the demands of the community won’t work. However, even if a mass walkout of patient groups could be organised, that just leaves the review in the hands of unhelpful others. On balance, I think it’s better to be part of it but to keep expectations realistic.

That said, there is always room for appropriate direct action by patient groups, so that voices are heard and concerns raised. Unfortunately, our reputation precedes us (crazy/hostile/angry/dangerous/unreasonable etc. etc.) and that isn’t a good starting point.

As I said in [a recent] blog post – “The exhortation to “speak truth to power” has become a commonly used slogan. The actual use of this concept to achieve real results is a complicated and nuanced process, especially if those doing the speaking are themselves without power.” Until we can change that [see reference to “media strategy” above], progress will continue to be painfully slow.

And later:

March 2018

The NICE manual on developing guidelines is here https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview The relevant part of the HSCA on NICE (section 232 onwards) is here https://www.legislation.gov.uk/ukpga/2012/7/part/8 It creates the power for NICE to carry out its statutory functions and sets out the usual duties/standards etc.

NICE has very broad statutory powers and is a self-regulating public body. This means that it would have to act very “irrationally” (in the legal sense) for any of its actions to be susceptible to challenge. This is quite normal for bodies of this nature and is to allow them a broad discretion in which to operate.

In a nutshell, NICE writes its own rules and marks its own homework. That said, I wouldn’t necessarily dismiss everyone connected with it out of hand. Obviously, I remain sceptical – but not everyone is a bad guy. However, as I said before, those who work for NICE have very little discretion in what they can do as they are bound by the process.

The main purpose of section 232 was to bring social care under NICE along with health. Presumably this was for political expediency – more commonly known as other ways in which we can cut costs and screw patients/those needing social care.

[apologies for the language but sometimes it’s necessary to call a spade a spade…]

The battle begins

NICE appears to encourage community engagement by inviting interested organisations to register as stakeholders in the guidelines update process. Because of the particular work which I have done over the many years, I applied to become a stakeholder for the “ME/CFS” review process under the “Organisations that fund or carry out research” category. This was in May 2018. (My application was much later than I had intended as a result of other life events intervening).

My application was duly accepted. In July, I checked the newly-updated list of stakeholders but could not find my organisation, Law and Health (the sub-heading of this blog since 2012) listed. I queried this with NICE and received the somewhat alarming reply below (note that there are some redactions in this correspondence because of data protection requirements). I apologise for the chaotic formatting which, despite my best efforts, falls apart from this point on:

NICE to me – 25 July 2018

We currently have you registered on our stakeholder list under the Queen Mary University of London name. This is because this organisation meets our criteria to be a registered stakeholder as we accept universities as stakeholders on our guidelines.
If you wish to be registered under the Law and Health organisation title instead, we would need you to re-register through our website as a stakeholder under this organisation name. Please be advised however that we would require proof with your registration that this organisation has a national remit and meets our criteria outlined on our website.  
If you are happy to stay registered under the Queen Mary University of London name, we are happy to accept any consultation comments from you and formally respond to each of these comments. However, please be advised that should your Law and Health organisation be judged to not meet our criteria, we will now not be able to formally respond to any comments you submit. We can only respond to comments from registered stakeholders which you currently are.
I was rather stunned by this news (many readers will recall that QMUL was the public authority responsible for withholding information about the controversial PACE trial of treatments for Chronic Fatigue Syndrome [sic]). Initially, I decided to take the line of least resistance and leave things as they were. However, within a few days, I had become extremely troubled by what NICE had done so I replied as follows:

My reply to NICE – 1 August

I have given some further thought to our recent email exchange and would like to raise the following points:
  1. I applied to register as a stakeholder under the banner of my organisation “Law and Health”. The notification that my application had been successful did not explain that this had been changed and I was now registered as a QMUL stakeholder. This was a unilateral change made without consultation or agreement and the notification was therefore misleading.
  2. Law and Health is a small organisation but, to the best of my knowledge, no other UK organisation covers this area. Its remit is to research due process as it relates to medical issues, particularly “ME/CFS”. Some of its work is reflected on the website (link below) but there is also ongoing work providing advice and assistance to other groups and individuals. This work is not publicly visible. To continue the work, I need access to as much information as possible regarding governmental, quasi- and non-governmental bodies. This is why I applied to register as a stakeholder under the Law and Health banner.
  3. I have no mandate to speak for QMUL regarding the NICE guidelines review. QMUL is aware of my work on “ME/CFS” and I use my academic address because it gives me greater access to research materials. However, I would be unable to comment on behalf of QMUL on NICE issues as my academic status there does not relate to this area
  4. I realise that the current round of comments on the current review has just closed. However, I would like the option of commenting later on in the process and to continue to receive the relevant documentation as a legitimate stakeholder.
I would be grateful if you would clarify how this situation came about, that I was registered under a different organisation from the one under which I applied and then not told of the change or given the chance to make further representations.
I would not expect to have to submit a further application as my first one should stand on its own merits in conjunction with the additional information I have provided here.
NICE to me – 10 August
Sorry for the delayed response. I have spoken with my colleagues in the Public Involvement Programme and we would unfortunately not be able to accept your Law and Health organisation as a valid stakeholder. Within our criteria we unfortunately cannot accept individuals, blogs or local/regional organisations as stakeholders. Our stakeholders must be a national organisation with a national remit and we believe that we currently have a few large national organisations registered on our stakeholder list that cover the same remit as yourselves.
We would recommend that you check our stakeholder list for this ME/CFS topic for an organisation that can represent your interests. Once you have found an organisation that shares the same remit as yourself, we would advise approaching this organisation to ask if you can submit any comments to them during our next consultation period. We would then be able to formally respond to your comments once they are submitted through this registered stakeholder.
You will also be able to submit any comments you have during our next consultation period if you choose to remain as a non-registered organisation. We will review these, however we will just not publish our responses to these comments on our website.
In terms of why you were initially aligned with the QMUL organisation, I believe this was because you registered through your QMUL email address and we were not able to find any information about your Law and Health organisation when searching online. We also didn’t receive a web link for your Law and Health organisation with your initial application. Therefore, we believed that this Law and Health organisation name was a sub-department of QMUL. We do not accept sub-departments of universities as registered stakeholders, so we registered you under the over-arching university name. However, we apologise for the confusion this has caused you.
As you have stated that you cannot be registered under the QMUL name, I will remove you from the stakeholder list now for this university. I would recommend that you please check our stakeholder list for any organisations that represent your interests.
My reply to NICE – 10 August
Thank you for your reply. Unfortunately, it contains a number of inaccuracies and incorrect assumptions so it fails to address adequately the issues which I raised in my previous email.
I have again checked the list of stakeholders and again cannot find any organisation which covers the same remit. We are therefore not in a position to approach any other stakeholder to “represent our interests”. One of our main purposes is research, for which we need direct access to stakeholder information.
I would be grateful if you could advise me of the appeal process against this decision.
NICE to me – 13 August
I have been passed your e-mail regarding registration as a stakeholder organisation for the ME/CFS guideline update. We very much welcome your interest in the guideline but, as set out in X’s original reply, based on the information provided your organisation does not appear to meet the criteria for registration. We’re unable to find any detail regarding Law and Health as an organisation, and the views and commentary on your personal website look to be broadly similar in nature to those from other registered organisations.
You stated that you require access to stakeholder information for research that you undertake. I’d like to reassure you that the minutes from the committee meetings throughout the guideline’s development, and the consultation versions of the guideline documents, are all made publically available on NICE’s website and access is not limited to stakeholders.
As X noted, at the point of consultation you will be still able to comment on all of the documents as a non-registered stakeholder, and those comments will be reviewed and considered by the guideline committee – it’s just that your comments will not receive a formal response and will not be published.
You note that your organisation provides advice and assistance to other groups and individuals and so we would encourage you to liaise with one of the national organisations which does similar work if you wish to submit comments through a registered organisation.
My reply to NICE – 15 August
Thank you for your email. As it mostly repeats the earlier points made by X, it does not take matters any further.
I am completely baffled as to why NICE should be using so much time (and therefore also public funding) trying to prevent me from becoming a legitimate stakeholder in the guidelines review process under the “organisations which fund and carry out research” criteria.
The evidence for this research (which we also fund) is clear and is contained within the Law and Health blog. It is also clear that it is not a “personal” blog, as you state (other than the category marked “Personal” in the sidebar). The title Law and Health appears at the top left of the screen, under the main picture, as it has done since I created the site in 2012.
Law and Health is neither “local” nor “regional”. The fact I provide assistance to other national stakeholder organisations indicates that its work is NOT covered by any other UK organisation.
NICE’s policy in dealing with this stakeholder application is proving to be opaque, inequitable and random in its application of the criteria. The effect of this approach is that I am apparently required to make representations retrospectively and in the absence of formal notice of the reasons for the refusal of the application.
As a statutory body and an executive branch of a governmental department, NICE is required to be fair, transparent and accountable. This stakeholder selection process is failing to meet those standards.
I would be grateful if you would advise me of the appeal process from this point.
NICE to me – 16 August
Thank you for your e-mail.
As noted in my previous e-mail, based on the information provided and on reviewing the content of your website, our understanding is that your organisation does not meet the criteria for registration – either as an organisation that funds or carries out research, or as a local organisation representing a group’s interests in the absence of a national organisation. As a result, we are unable to register Law and Health as a stakeholder organisation.
Just to confirm, you will still be able to access all of the committee meeting minutes which will be published on the NICE’s website during the development of the guideline. You will also have access to all of the guideline documents at the point of consultation on the guideline. You will be able to submit comments on the guideline at that point and those comments will be considered by the committee, however you won’t receive a formal response.
If you would like to like to make a complaint about the decision or about the way your registration application has been handled, please contact [Associate Director] in NICE’s Corporate office (or by mail at National Institute for Health and Care Excellence, 10 Spring Gardens, London, SW1A 2BU)
I replied as follows and then contacted the relevant Associate Director: this is the correspondence from that exchange:
My reply to NICE – 17 August 
This is not only about access to information but also proper recognition of a legitimate stakeholder. Your response is based purely on opinion and does not contain any reasoning behind your decision. 
 
The lack of a proper structure in your replies suggests that NICE is making up the rules as it goes along and then marking its own homework after the event. This allows an inappropriate degree of control over the process without any independent scrutiny or review mechanism .
As I said before, NICE is a publicly-funded body, created by statute, and an executive branch of a governmental department. As such, it is required to be fair, transparent and accountable. This stakeholder selection process fails to meet those standards. 
 
You will be aware from reading my blog that I have lived with ME, in varying degrees of severity, for 37 years. As a result, my resources – both in health terms and financially – are limited. I am therefore not in a strong position to pursue this process any further. Ultimately, it concerns a point of principle and the outcome will not change anything for the benefit of the millions of people who live with this illness worldwide. 
 
My main purpose for the years that remain to me is to continue to do as much as I can to improve the shocking conditions with which those with ME have lived for many decades. There would seem to be little to be gained from wasting more time and further exacerbating my health by pursuing this process. However, after due consideration, I have decided to send this email separately to the Associate Director as a formal complaint, not in the expectation of any progress, but because this situation needs to be addressed at the most senior level within the NICE structure. 
NICE to me – 20 August
Thank you for your below email, which I will investigate and respond to under NICE’s complaints policy. In line with the timescales within the policy, I hope to send you my response within 20 working days.
To inform my response, it would be helpful to know more about the research you fund and carry out in relation to this area.
My reply to NICE – 22 August
My complaint is that NICE is not operating in a fair and transparent manner in relation to applications to become a stakeholder in the ME/CFS guidelines in development process.
  • The original application online submission form is very short and, unless a screenshot is taken, no record of it remains with the applicant
  • As I recall, no proof of the organisation’s activities is required at the time of application
  • After submission of the application, NICE then apparently conducts its own investigation of the organisation without transparency or accountability in its methodology and in the absence of formal criteria. The investigation procedure is not made clear as a part of the process
  • In my case, NICE assigned me as a stakeholder to a different organisation (QMUL) without consultation or notification. I discovered this purely by chance after the event
  • The appeal/complaints procedure is unclear and appears unstructuredI am surprised, therefore, to be asked at this very late stage to justify Law and Health’s application to meet NICE’s requirements to become a stakeholder and without knowing what those requirements are. The blog on the website (link at the foot of this email) contains the information which supports my application as an organisation that funds OR carries out research. [continues…..]
  • Law and Health was created in 2012 to publish my research on the so-called “Secret Files on ME”. It now consists of Professor Robin Callender Smith and myself
  • The organisation was set up earlier than expected for reasons which are explained in the About section. It was therefore created before I had formulated in full how it was going to operate, including the title and full remit of the organisation 
  • Further research followed later, some of which is to be found in the “CATEGORIES” section of the blog. Inevitably, there is also a large amount of background work which is not documented  
  • As a result of the “Secret Files” work, people began to contact us (including from outside the UK), seeking advice and assistance. We always respond where possible and practical although the work is limited by my health 
  • We provide our own funding for specific projects. However, this is not shown in the blog for reasons of patient or client confidentiality and data protection
  • To the best of our knowledge, no other organisation carries out the same functions as Law and Health
As I have said previously, “NICE is a publicly-funded body, created by statute, and an executive branch of a governmental department. As such, it is required to be fair, transparent and accountable. This stakeholder selection process fails to meet those standards.”
The final cut…..
NICE to me – 31 August 
Thank you for responding with the further information below, which I have used to inform my review of your complaint about NICE’s decision not to register Law and Health as a stakeholder for the NICE guideline on ME/CFS. I have also reviewed your email exchanges with NICE’s Centre for Guidelines, the information on https://valerieeliotsmith.com/, and discussed your complaint with management in NICE’s Centre for Guidelines.I have undertaken my review in accordance with NICE’s published complaints policy and procedure, having had no prior involvement in this matter.
Firstly, thank you for your interest in engaging with the development of this guideline and I am sorry that you have found the experience unsatisfactory.
I am also sorry for the misunderstanding that led to you initially being registered on behalf of Queen Mary University of London (QMUL). I see that X explained the reason why this occurred in his email to you on 10 August, and apologised for the confusion caused. He also advised that anyone not registered as a stakeholder could still submit comments on the draft guideline.
I understand the central element of your complaint to be NICE’s decision not to accept Law and Health as a registered stakeholder, and its actions in doing so, which you believe represent a failure to act in a fair, transparent and accountable manner.
To manage the involvement of the large number of organisations who wish to contribute to the development of our guidelines, NICE has published the following criteria for establishing who can register as a stakeholder:
a)National organisations for people who use health and social care services, their families and carers, and the public
b)Healthwatch organisations
c)National organisations that represent health and social care practitioners and other relevant professionals whose practice may be affected by the guideline
d)Companies that manufacture medicines, devices, equipment or adaptations, and commercial industries relevant to public health, excluding the tobacco industry
e)Tobacco industry organisations who register to participate are automatically registered as respondents
f)Public sector providers and commissioners of care or services
g)Private, voluntary sector and other independent providers of care or services
h)Government departments and national statutory agencies
i)Organisations that fund or carry out research
j)Overseas agencies with a remit covering England
k)Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group’s specific interests.
Those not meeting the criteria to register as a stakeholder can still submit comments on the draft scope and guideline. But, due to resource constraints, NICE does not individually respond to these. The criteria are available on the NICE website, along with detailed information on how guidelines are developed.
Based on the information provided in your correspondence and on reviewing the content ofhttps://valerieeliotsmith.com/, the Centre for Guidelines decided that Law and Health does not meet the criteria for registration. The initial decision was based on criteria (a) and (k), with subsequent consideration of criterion (i).
As noted above, I have reviewed the information provided in your emails to NICE and your website, and having done so, I agree that the decision not to register Law and Health as a stakeholder under these criteria was appropriate and reasonable. In particular I noted the following statement under the “about” tab of the website:“Independent status: The views expressed in this blog are my own. I am not affiliated to any other group or professional body relating to ME or CFS issues.” Also, I was unable to find any reference elsewhere on the internet to Law and Health that would indicate Law and Health is operating as an organisation at a national scale, and I am mindful that, as per your email to me on 22 August, the organisation consists of two people. I also considered the additional information you helpfully provided to me about the research work undertaken, alongside the information on your website, but having done so, support NICE’s earlier decision this does not fulfil criterion (i). For while ‘research’ is not publicly defined for the purpose of this criterion, it typically relates to organisations undertaking peer reviewed primary research, such as universities.
I have considered the decision making process within the Centre for Guidelines and am satisfied this was appropriate, with views taken from senior management in the Centre, and NICE’s Public Involvement Programme.
In terms of independent review or scrutiny of NICE’s decisions about stakeholder registration, I would highlight that the complaints process provides for this, and details of this option were given to you by X. I have not previously been involved in this matter, and work in a separate part of NICE to the Centre for Guidelines, and so have reviewed this from an independent position. Also, the complaints process provides opportunity for further independent review and challenge of my response. Given this, and the significant amount of information on the NICE website about our guidance and the way we produce this, I believe NICE does act in a fair, transparent, and accountable manner.
I do however appreciate your concerns about the stakeholder registration process, and agree that it would be helpful if further information is publicly available on how NICE defines the stakeholder registration criteria. This would further help transparency and mitigate any perception that NICE is acting in an inconsistent manner, or seeking a post-hoc rationalisation of its decisions. As a result of your complaint, I am recommending this is considered further.
I am not pursuing this any further as there is nothing to be gained and my resources have reached their limit.
This is a deeply flawed process and does not inspire confidence for any of NICE’s activities which are, we must remember, intended to “provide national guidance and advice to improve health and social care”.
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Karina Hansen 8 (updated): the aftermath continues

August 10, 2018

GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update.

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Karina in November 2016 shortly after her return home

UPDATE August 2018

On 9 July 2018, psychiatrist Dr Charlotte Emborg visited Karina at home. Dr Emborg was appointed by the court in Holstebro to make an independent assessment of Karina’s health and her capacity to manage her own affairs. It appears that Dr Emborg’s provisional report indicates the following important points:

  • Karina does not suffer from any psychiatric illness
  • She understands the role and purpose of her court-appointed guardian and she would like him to be removed from her case
  • She is capable of managing her own finances

As a result of this assessment, there no longer appears to be any justification for retaining the guardian in Karina’s case. However, it remains to be seen if/when Judge Lillian Lund Tinggaard at the court in Holstebro will make the appropriate directions for his removal.

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ORIGINAL POST from June 2018

Regular readers of this blog will already be familiar with Karina Hansen’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of myalgic encephalomyelitis (ME) patients generally. For new readers, and those needing a more detailed reminder of her story, there is a full summary at the end of this post.

Karina is a young woman from Denmark who became ill with the severe form of ME as a teenager. She was being cared for at home by her family but, in February 2013, she was forcibly removed by the state authorities and confined in an institution for three and a half years as a de facto psychiatric patient.  Her family members were not allowed to visit her and she was subjected to highly inappropriate treatment.

She was eventually allowed to return home in October 2016, in a far worse condition than when she had arrived at the institution. Both she and her family have experienced – and continue to experience – considerable trauma as a result of this state intervention.

I have recently received an update on Karina’s situation from Bente Stenfalk of Borgerretsbevægelsen (Civil Rights Movement Group in Denmark). Bente has been closely involved in Karina’s case since 2015. I have paraphrased Bente’s statement (with her permission) for clarification purposes. It does not make for reassuring reading:

June 2018

The case of Karina Hansen continues to be fraught with challenges. However, there has been one new positive development: Karina’s psychiatrist, Dr Mogens Undén recently prepared a fresh statement on her behalf and, as a result, she is now receiving a five-year pension.

Conversely, there has been no further progress in the ongoing court proceedings relating to the removal of her official guardian [appointed by the court in the mistaken belief that Karina lacked capacity to make her own decisions]. We are still waiting for the judge at the local court in Holstebro to consider Dr Undén’s new statement on Karina’s condition at the next hearing.

So far, the judge in Holstebro has refused to allow the removal of the guardian in Karina’s case. She recently ordered that a medical officer from the region visit Karina at home to check her living situation. However, the organisation that deals with the provision of such medical officers had closed down so there was no one available to carry out the judge’s direction. I tried to find out who was in charge of providing medical officers in the Region of Midjudland but they sent me to the North Jutland Region – who then sent me to the Board for Patient Safety. Months later, I am still waiting for a reply from the Board.

As a matter of the utmost importance, I have requested that no doctor who is unknown to Karina’s family visit her at home. The last time unknown doctors came to her home, she was forcibly taken away and incarcerated for three and a half years. There must be no repetition of such traumatic events.

Nevertheless, the judge has now decided that psychiatrist Dr Charlotte Emborg should visit Karina at home. Apparently, Dr Emborg will not make a formal statement; she must simply be satisfied that Karina is generally well and has the capacity to answer questions about her life and situation. It would seem that the judge has disregarded our request not to send an unknown doctor to Karina’s home.

It also appears that the judge did not listen to our recommendation that, as Karina’s psychiatrist, Dr Undén’s opinion should be given priority in her case. I had asked the court in Holstebro to treat his additional statement accordingly but I did not receive a formal response. At one point, a psychiatrist from the Research Clinic for Functional Diseases was proposed but then vetoed by Karina’s lawyer, Per Broe-Andersen as not being sufficiently independent. Eventually, Dr Emborg was accepted by all parties.

We are now at the stage where many people (including me) have observed Karina answer relevant questions in writing. These people include Karina’s parents + other members of her family, her psychiatrist Dr Undén, her lawyer, local physician Dr Stig Gerdes, her official guardian Kaj Stendorf and several people from the municipality.

It is unclear why the judge in Holstebro is failing to expedite the removal of Karina’s guardian. Mr Stendorf himself agrees that Karina no longer needs his intervention. However, this has been the consistent pattern with all state and judicial involvement in Karina’s case over many years. A change of official attitude is long overdue – before even more damage is done to Karina and her family.

Karina’s case is a national disgrace.

~Bente Stenfalk

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KARINA’S STORY

Karina lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME).

[ME is a complex, multi-systemic neuro-immune disease; its controversial nature continues to cause immense patient suffering and distress. ME receives universally derisory state funding for desperately-needed biomedical research/treatment, despite having been accurately identified and described in the 1950’s and recognised as a neurological condition by the World Health Organization since 1969.]

ME patients in many countries are still routinely referred to psychiatrists who use the inappropriate, and sometimes dangerous, psychosocial treatment model, often in combination with unsuitable psychotropic medication. Despite often extreme physical and cognitive impairment, patients are frequently unable to access medical treatment with a knowledgeable physician. There is still no single universally agreed diagnostic pathway or treatment for ME – and definitely no cure, despite the claims made by some.

Inevitably, Karina’s diagnosis became the subject of a prolonged dispute. Her family continued to care for her at home, in accordance with her express wishes. However, in February 2013, then aged 24, she was forcibly removed from her home by a large team of police, doctors and social workers. She was taken to Hammel Neurocenter, against both her own will and that of her family. Hammel is part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital.

Several doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink were in charge of her treatment at Hammel. Shortly after her initial detention, she was classed as a “voluntary” patient, despite having been taken there against her will. Her condition deteriorated rapidly after her admission to the Clinic and shortly afterwards, she was found by the local court to lack capacity to make her own decisions. As a result of that finding, the court appointed a legal guardian to take responsibility for her welfare and make decisions on her behalf. 

Three years on, in February 2016, Karina remained a de facto prisoner of the state. She had been moved to a nearby rehabilitation center but allowed very little contact with her family. Her father was permitted to visit her in December 2015. Whilst she was physically clean and cared-for, she was apparently immobilized, in a wheelchair and unable to speak except for incomprehensible mumbling and grimaces. At that time, she did not appear to recognize her own father.

During the course of 2016, I wrote a series of articles chronicling and analyzing Karina’s story from my perspective as a lawyer, a journalist and a long-time ME patient. On 12 October, I wrote a short update detailing the changes which were beginning to come about in Karina’s condition. Although she still could not speak, her ability to communicate with gestures was increasing, her mobility was improving and her parents had been able to visit on a regular basis during the preceding weeks.

On Monday 17 October 2016, after three and a half years of incarceration, Karina was able to return home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs. The trial period passed without incident; Karina was home at last – but with a future changed forever.

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Disclosure

I have lived with the illness ME since 1981. For more information see About.

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