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Update on the “paused” NICE guideline for “ME/CFS”: the case for individual/community publication.

August 25, 2021

Disclosure: I have lived with the discrete illness myalgic encephalomyelitis since 1981. I have written extensively about the NICE process (amongst other topics) in relation to this illness. I work independently and I am not affiliated to any organisation or group in the ME community. For more information see About.

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This post follows on from my previous one on this topic, dated 20 August 2021 (see here). For the full story so far, please refer to that post.

Summary for new readers

In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the dangerously out-of-date guideline for “ME/CFS” (myalgic encephalomyelitis/chronic fatigue syndrome), originally published in 2007. This guideline recommended treatments which many patients have long found to be actively harmful.

After several delays, the draft guideline was published on 10 November 2020. 2021-08-21 (2) This draft removed/downgraded the most harmful treatments from its recommendations and, as such, was broadly welcomed by the patient community. On 4 August 2021, the new guideline, marked “FINAL“, was circulated to stakeholders who had commented on the draft version.

By this stage, the guideline committee had approved this final version and, according to the NICE manual, the NICE Guidance Executive would now have signed it off. The fact that it was then circulated to stakeholders indicated that the process was now closed and completed.

According to NICE’s “Main stages of guideline development“, the publication stage began at this point. Publication to the world at large was scheduled for 14 days later, on 18 August. The document was to remain confidential until then.

Just after 3pm on 17 August, less than 9 hours before the scheduled time for general publication of the new guideline, NICE notified stakeholders that it was “pausing” publication. By this stage, only exceptional circumstances could have derailed the process. Thus far, NICE has failed to provide evidence of any such circumstances.

The current position

If NICE is planning to open up a new consultation process on its guideline for “ME/CFS” then it must clarify its position immediately and communicate this with full transparency to stakeholders and the general public. If NICE fails to provide this information, then this amounts to a breach of its duty to properly exercise its statutory functions. 

If there is no proposed plan, then NICE should publish the new guideline of its own volition without further delay.

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Individual publication of the new guideline

Following my previous post, a number of people contacted me. I now have a copy of the guideline.

The main risk in publishing would be borne by me as the publisher and I am willing to take that risk. However, understandable individual concerns have been expressed by others.

I am not prepared to publish it here without the full agreement of all parties involved so I will not proceed for the time being.

[Edited to add: no one is preventing me from publishing. However, whilst I can manage risk on my own behalf, I cannot breach the trust of anyone who might provide information in confidence but then has legitimate concerns about proceeding with my publishing it. In any event, community publication would have much more impact.]

My assessment of the guideline

It’s rubbish. It still contains far too much latitude for abuse of patients. However, it is less rubbish than the existing guideline from 2007. It is a significant improvement on that and it is the best we are going to get for the foreseeable future.

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Reasons why community publication is now imperative
  1. Purpose:
    To provide essential information to the public about the guideline as it stood on 17 August 2021 and as a comparator with any future versions of the new guideline.
  2. De facto publication:
    The new guideline document has already been distributed, officially and unofficially, to a large number of recipients via 280 stakeholder groups and multiple media leaks therefore de facto publication has already occurred.
  3. Public domain:
    Information about the contents of the document has been in the public domain since 17 August via various media reports. That information is not inherently secret.
  4. Confidentiality expired:
    The confidential nature of the document expired at 12.01am on 18 August. This, combined with the de facto publication, means that the document has lost its “quality of confidence”.
  5. Public health considerations:
    The process of updating the guideline has been delayed several times. NICE has been on notice since April 2019 that patients may be experiencing harm from treatments recommended in the 2007 guideline. That guideline remains operative until NICE publishes the new version. The public health considerations and potential liability issues raised by this further delay militate strongly in favour of immediate publication.
  6. Delaying publication without clear justification is an unlawful action:
    Millions of members of the international ME community have been waiting years for this new guideline. Delaying publication further without reasonable justification and in apparent contravention of NICE’s own Guidance Development Manual would be unlawful. NICE has a wide discretion in the way it conducts its affairs but credible reasons for the delay have not been forthcoming.

In all the circumstances, the arguments for publication demonstrate that there is an overwhelming public interest in favour of publishing the guideline.

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NICE – contemptuous and contemptible: the case for community publication of the “paused” guideline for “ME/CFS”

August 20, 2021

Disclosure: I have lived with the discrete illness myalgic encephalomyelitis since 1981. I have written extensively about the NICE process (amongst other topics) in relation to this illness.

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Background

In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the dangerously out-of-date guideline for “ME/CFS” (myalgic encephalomyelitis/chronic fatigue syndrome), originally published in 2007. This guideline recommended treatments which many patients have long found to be actively harmful. 

2021-06-28 (4)The new draft guideline was published on 10 November 2020, followed by a 6-week stakeholder consultation period. Final publication of the new guideline was expected on 18 August 2021. The draft guideline removed/downgraded the most harmful treatments from its recommendations and, as such, was broadly welcomed by the patient community.

On 4 August 2021, as expected, the final version of the new guideline was circulated to stakeholders who had commented on the draft. By this stage, the guideline committee (now down to 18 members) had approved the final version (notwithstanding three resignations) and, according to the NICE manual, the NICE Guidance Executive would have signed it off. The fact that it was then circulated to stakeholders indicates that the process was now complete.

What happened then?

At just after 3pm on 17 August, less than 9 hours before the new guideline was due to go live, I, along with other stakeholders, received an email from NICE headed “MEDIA STATEMENT: NICE pauses publication of updated guideline on diagnosis and management of ME/CFS” (see end of this post for full statement).

The reasons NICE gives for this “pause” are unclear and not in accordance with “its usual rigorous methodology and process“, as proclaimed in the fourth paragraph of the statement. The inevitable inference from this lack of clarity is that someone, or some groups, raised objections at the eleventh hour and, completely at odds with its stated practice and procedure, NICE caved.

If this observation is correct then, at this point, NICE compromised its independence and credibility as an organisation. The inference of external meddling is boosted by media reports (eg. here [£] and here) indicating that, amongst others, the Royal College of Physicians and the Royal College of Paediatrics and Child Health did not accept the final version of the guideline.

Was this “pausing” of the guideline justifiable?

By this point, this action by NICE of “pausing” the publication should have been impossible. Such a step is not in accordance with its own manual which states quite clearly:

This step [releasing an advance copy to stakeholders] allows registered stakeholders to highlight to NICE any substantive errors, and to prepare for publication and implementation. It is not an opportunity to comment further on the guideline. [my emphasis]

Depending on what happens over the next few weeks, this action by NICE may require closer legal scrutiny.

The statement from NICE also contains the sentence: “Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps.” This is nonsensical. The guideline had already been published, albeit on a confidential basis, to a large number of people via the stakeholders who had commented on the draft. It had also been extensively leaked to the media (as would be expected by everyone, NICE included) in preparation for the anticipated public release on 18 August.

At this stage, the so-called “pre-publication period” and the opportunity to raise further issues had already passed. 

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Contemptuous and contemptible 

In pausing publication of the new guideline without proper explanation, NICE has demonstrated contempt for the “ME/CFS” patient community, a community described in its own draft guideline as one which may “have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness“.

Over the last few years, many severely ill patients have volunteered substantial amounts of time and exhausted their very limited resources in order to contribute to the guideline review process. This has come at massive cost to their own health and wellbeing.

In the absence of reasons and credible justification, NICE’s actions over the last few days can only be regarded as contemptible. 

Where are we now with the “paused” guideline?

NICE is an internationally respected organisation. Healthcare professionals and patients all over the world have a keen interest in both the guidance it produces and how it conducts itself. 

In the case of the “ME/CFS” guideline review process, something appears to have gone very wrong. There may be a valid reason for this misstep but the sketchy information provided so far is vague and lacking transparency. 

Earlier on in the review process, NICE sought evidence from patient groups concerning the harm which had been experienced as a result of treatments recommended in its 2007 guideline (Graded Exercise Therapy and Cognitive Behavioural Therapy). In April 2019, at very short notice, the requested survey was provided. Since that time, NICE has been on notice of the harms caused to many patients from its recommended treatments.

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THE CASE FOR PUBLISHING THE “PAUSED” GUIDELINE

From a legal point of view, there is limited precedent. However, two points should be considered:

  • The new guideline has already been distributed to a very wide range of parties, both officially and unofficially. It is now most unlikely that the information contained within the guideline can still retain its quality of confidentiality.
  • NICE began the process of updating the guideline in 2017. Initially, it was expected to take 2 years. It has been ongoing for nearly 4 years and now appears to have stalled indefinitely, with NICE having deviated from its own rule book without apparent justification. At this point, there is therefore a strong argument that the public interest in publishing the “paused” guideline is overwhelming. 

Once the final version of the guideline is made available to everyone with a legitimate interest in this process, it will then be possible for comparisons to be made between the “paused” version which was due on 18 August 2021 and any subsequent version which NICE may release. If there are unexpected substantial changes and/or modifications to the language, then that will be for NICE to justify in an appropriate forum in due course.

It is important to remember that, as things stand at the moment, the old guideline from 2007 which recommends harmful treatments for “ME/CFS” patients, remains the operative practical guidance for health and social care practitioners, the Department for Work and Pensions (DWP), local authority safeguarding teams and insurance companies. The “paused” guideline rejects such treatments but will not protect future patients until it officially replaces the old standard.

Nevertheless, publication of the “paused” version by members of the “ME/CFS” community en masse would provide a comparator to the 2007 version, one which had been signed off and therefore has a credibility well beyond the draft version (still currently available on the NICE website).

SUGGESTED OPTIONS FOR COMMUNITY PUBLICATION OUTSIDE NICE

I am a stakeholder in the NICE process but I did not comment on the draft so I do not have a copy of the “paused” guideline. Stakeholders who have received a copy of the guideline were required to sign a non-disclosure agreement (NDA). However, given NICE’s recent unprecedented action, the validity of those NDA’s must now be in doubt.

Options for community publication:

  1. Anyone who has a copy of the “paused” guideline is welcome to contact me in absolute confidence. I could then, by agreement and format permitting, publish it on this blog, on behalf of the ME patient community. For details of how to get in touch see About.
  2. The better option: if a critical number of organisations who are in possession of the “paused” guideline decide to publish contemporaneously, then mass publication would be achieved.

NICE would then need to consider whether there is (legalese alert) a proportionate response to community publication that does not interfere with the rights of individual members of the ME community in the UK under Articles 8 and 10 of the European Convention of Human Rights

 

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TEXT OF STATEMENT FROM NICE SENT BY EMAIL ON 17 AUGUST 2021

MEDIA STATEMENT

NICE pauses publication of updated guideline on diagnosis and management

of ME/CFS

NICE has today (17 August 2021) taken the decision to pause publication of its
updated guideline on the diagnosis and management of myalgic encephalomyelitis
(or encephalopathy)/chronic fatigue syndrome (ME/CFS).
The guideline recognises that ME/CFS is a complex, multi-system, chronic medical
condition where there is no ‘one size fits all’ approach to managing symptoms. The
causes of ME/CFS are still poorly understood and because of this there are strong
views around the management of this debilitating condition.
Because of issues raised during the pre-publication period with the final guideline,
we need to take time to consider next steps. We will hold conversations with
professional and patient stakeholder groups to do this. We need to do this so that the
guideline is supported.
NICE has used its usual rigorous methodology and process in developing this
guideline but despite the best efforts of the committee, that followed these to the
letter to bring together the available evidence and the real, lived experience and
testimony of people with ME/CFS, we have not been able to produce a guideline that
is supported by all.
We want to thank everyone who has contributed to this guideline and particularly the
committee and the patient groups who have worked so diligently. However, unless
the recommendations in the guideline are supported and implemented by
professionals and the NHS, people with ME/CFS may not get the care and help they
need.
In order to have the desired impact, the recommendations must be supported by
those who will implement them and NICE will now explore if this support can be
achieved.

 

Beyond the NICE guideline: MEComms© and the case for a public inquiry

July 5, 2021

NOTE: “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” or “ME/CFS” (NICE’s terminology) is the subject of numerous different names and a confusing variety of case definitions. For the purposes of this blog, it is ME, the complex, multi-systemic neuroimmune disease with which I have lived since 1981. Follow link here for more information about ME and About for more details about me and my work.

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Beyond the new NICE guideline

The final publication by the English National Institute for Health and Care Excellence (NICE) of the new guideline on “ME/CFS” [sic] is due in six weeks’ time, on 18 August 2021. Whatever the outcome, it would be wise for the ME patient community to look beyond that date and, collectively, begin to plan ahead.

A new and robust strategy is required, aimed at addressing the historical damage caused to members of the patient community, collectively and individually, by a psychiatric lobby which frequently promotes its own interests above that of patients.

This powerful lobby group has a number of ongoing objectives, including:

  • Promoting inappropriate, sometimes dangerous, psychological and behavioural treatments for the disease
  • Obfuscating the overwhelming need for long overdue biomedical research
  • Continuing to create an environment which is broadly hostile to the ME patient community

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Proposed MEComms©

Following my previous post which examined the rationale for a new communications strategy for the UK’s ME patient community, a number of issues arose from the feedback. These are the key points:

  1. MEComms: the proposed new coalition – “MEComms” – should be composed of representatives from a small number of established patient groups in order to share resources and for continuity. MEComms would then establish a media steering group (or committee) with an agreed mandate.
    (Note: this project will have a lower chance of success if it is initiated by a single existing group as it is unlikely to be able to achieve the necessary scale or level of community trust. Community divisions are always a challenge; as I said in my previous post, the aim should be for a unified, rather than a united, approach.)
  2. Professional expertise: MEComms must obtain expert, professional advice and support. The proposal is too complex and far-reaching to work on an amateur basis, however keen its participants. This is a patient community of severely restricted capability because of a) the excessively debilitating nature of the illness and b) a limited pool of external supporters who are willing and able to pitch in and assist. 
  3. Scale: my proposal is on a much larger scale than anything that has been tried previously. Individual groups within the ME community have instigated PR initiatives but these have been much smaller than what I am proposing and therefore had less impact.
  4. Implementation: a simplified pathway for implementing my proposal for this strategy is set out in my 2019 post “Changing the narrative #3” (scroll down to second half) There is some further detail in “Changing the narrative #4”
  5. Funding: adequate funding is vital and must be addressed before anything concrete can begin. Again, see “Changing the narrative #3” (above) and my previous post (above). This is not a project which can expect success on a pro bono basis or on a minimal budget.

Looking to the future, the initial priority would be to change the existing flawed narrative around the ME and its patient community. This is the first stage in creating a more positive environment for a longer term aim of securing a public inquiry.

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The case for a UK public inquiry into the history of the illness ME (myalgic encephalomyelitis) and the treatment of patients

The possibility of a public inquiry is a perennial idea which is bounced around the ME community from time to time but has never, to my knowledge, gained any serious traction. As the ME patient community has been traduced in public inquiry Act imagepopular culture by the hostile environment which has been carefully cultivated by the psychiatric lobby (as detailed in earlier posts on this blog), perhaps this is not surprising.

The Gibson inquiry of 2006, which was chaired by the UK member of parliament, the late Dr Ian Gibson, made a brave attempt at establishing some of the background relating to the lack of research and funding for ME. However, it was a small ad hoc inquiry with a limited remit, no powers to compel witnesses and no teeth, so its impact was minimal.

A judge-led public inquiry with a wide-ranging scope and full statutory powers is long overdue for the ME patient community in the UK. Such an inquiry would be the most effective way of acknowledging the decades of shocking treatment of patients and, belatedly, making appropriate recommendations to rectify the situation.

Most public inquiries are prolonged and highly traumatic for the participants. The recommendations may be instrumental in changing future behaviour but are not binding. Nevertheless, it’s the best option available to the ME community as a long-term goal on which to focus.

What is a public inquiry?

The Institute for Government website describes it as follows:

Public inquiries are major investigations – convened by a government minister – that can be gifted special powers to compel testimony and the release of other forms of evidence…….The only justification required for a public inquiry is the existence of “public concern” about a particular event or set of events.

What is its purpose?

The website outlines an inquiry’s purpose in these terms:

Jason Beer QC, the UK’s leading authority on public inquiries, argues that the main function of inquiries is to address three key questions:

  1. What happened?
  2. Why did it happen and who is to blame?
  3. What can be done to prevent this happening again?

All inquiries start by looking at what happened. They do this by collecting evidence, analysing documents and examining witness testimonies.

Who pays for a public inquiry? [This section added December 2021] 

Broadly speaking, the cost of an inquiry is borne by the governmental department that orders it (eg. Department for Health and Social Care) ie. it’s paid for by public money.  This covers legal representation for core participants who are in scope. However, anyone outside that who wants to be represented has to cover their own costs. See more at  https://www.slatergordon.co.uk/personal-injury-claim/public-inquiries/fees/

More on public inquiries

For further information, the Institute for Government site is very helpful. The official government site is rather more ponderous but still worth a look.

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A Covid-19 inquiry in the UK

There will almost certainly be a public inquiry into Covid-19 within the foreseeable future. This will probably include long Covid in its scope so, by extension, it’s possible that ME would also come within its remit. This may or may not be helpful, depending on the parameters of its inclusion, the danger being that it could be far too narrow to be of any benefit to the ME patient community.

If ME were to be included in a Covid-19 inquiry, then a further dilemma might arise: would this exclude it from a full inquiry of its own at a later date? This is a matter where expert public affairs advice would be essential in order to determine a clear, coordinated community position and gather lobby support.  

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times ~ Valerie Eliot Smith 2019

Time scales

Public inquiries can last for a long time; for example the notoriously lengthy Saville inquiry into Bloody Sunday took twelve years to complete and finally reported in 2010. The original events in question, “Bloody Sunday“, occurred in 1972.

Assuming that the ME community decides to begin working towards getting a public inquiry into ME under way, it will still take some considerable time for the process to be finalised. Even if the community was to begin lobbying right now, it would probably be another ten years before it actually took place. This is why it is imperative that, if such a course of action is to be pursued, then it needs to start as soon as possible.

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The remit for MEComms: from strategy to inquiry

MEComms’ remit should be to commence work on the following (with appropriate professional advice and assistance):

  1. Develop a new communications/public affairs strategy and media platform 
  2. Provide accurate information and updates both outside and inside the ME community
  3. Construct a positive, accurate narrative, with a particular emphasis on proactive dissemination of information, and counter misinformation as necessary
  4. Address the reputational damage which the community has experienced by creating a counter-narrative to the previously pejorative stories peddled to the media
  5. Once 1-4 above start to take effect, commence a lobbying programme with a view to securing a full public inquiry 

However, it must be remembered that all of this will take time, effort – and, of course, resources.

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For information about my work and contact details, go to the About section.

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FOLLOW-UP to previous post on responses to the draft NICE guideline for “ME/CFS” + the need for a communications strategy rethink

July 1, 2021

This post follows up on some of the feedback from my previous post on possible community responses to the draft NICE guideline for “ME/CFS”. A number of points have been raised directly and on social media. It’s easier to address them here rather than trying to pick them off individually. 

NICE GUIDELINE RESPONSES

Re-cap

In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the existing guideline on myalgic encephalomyelitis (ME), originally published in 2007. Within the UK, Scotland and Northern Ireland have their own equivalent processes and legal systems. This post relates to the situation in England and Wales.

The draft consultation documentsOtVmgpckQr25e6Xxl%PU8A were published on 10 November 2020, followed by a six-week consultation period concluding on 22 December 2020. The final publication date has been delayed several times but is now expected on 18 August 2021.

[NOTE: “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” (NICE’s terminology) is the subject of numerous different names and a confusing variety of case definitions. For the purposes of this blog, it is ME, the complex, multi-systemic neuroimmune disease with which I have lived since 1981.]

The function of judicial review as a response to the final publication of the new NICE guidance

Judicial review is only concerned with the lawfulness of a public body’s (ie. NICE’s) decision-making process. It is not about whether or not the judge agrees with the substance of the decision. This extract from the judiciary.uk website explains more:

…[J]udicial reviews are a challenge to the way in which a decision has been made, rather than the rights and wrongs of the conclusion reached.

It is not really concerned with the conclusions of that process and whether those were ‘right’, as long as the right procedures have been followed. The court will not substitute what it thinks is the ‘correct’ decision.

This may mean that the public body will be able to make the same decision again, so long as it does so in a lawful way.

This means that the High Court will not be re-examining the evidence relating to ME as a health condition. The judge will simply be considering the process of how the decision was made. It is not a reconsideration of the merits of the scientific basis for the decision. That is a matter for the guideline committee appointed for that purpose by NICE and the court would not interfere with the substantive findings on the evidence by that committee. 

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THE COMMUNICATIONS STRATEGY RATIONALE

This topic is directly relevant to the NICE process. Popular culture still reflects a negative perception of the ME community, long Covid notwithstanding. A simple glance at the very mixed media coverage on the topic – and the comments arising from it – confirms this beyond doubt.

Decision makers at all levels are influenced by media reports and lobbying strategies, as part of either a conscious and/or a sub-conscious process. Despite some recent progress, the ME patient community is still not a player at the right level to be able to achieve significant change.

Dealing with misinformation

The “psychiatric lobby”, (to which I referred in my earlier post) is still intent on protecting its position as the controlling player in the ME narrative. Members of this group continue to promote their collective, misguided belief in the benefits of psychological and behavioural therapies as suitable treatments, thereby indirectly obstructing urgently-needed biomedical research.

One question which is often raised by the ME community is how to counter the misinformation propagated by this extremely powerful lobby. In response to one such recent inquiry, I made these points (paraphrased):

  • Our focus should not be on countering misinformation. We know from previous experience that it’s not very effective. Our long-term aim should be to develop a strategic plan which incorporates a broad media platform. This is so that the patient community can set its own media agenda and create its own narrative. Simply trying to counter misinformation off the back foot doesn’t work and looks weak and defensive.
  • There is only a limited amount that individuals and small groups can do in isolation. If different groups are trying to counter the psychiatric lobby’s narrative separately and tell the patient story inconsistently then again, we just appear disunited and powerless. The building of a patient-oriented media agenda must come from a broad coalition of groups appointed specifically for that purpose, however difficult that may be to coordinate and manage.

Yet another example of carefully-placed misinformation appeared again recently in the BMJ Opinion section. Snappily entitled “Many patients with ‘long’ covid are experiencing extreme fatigue, a situation that has re-polarised approaches to treatment and rehabilitation”, it again repeated the depiction of the ME patient community as a crowd of dangerous, deluded agitants. The article attracted some excellent responses – but they are just that – responses and therefore defensive rather than proactive.

The ME patient community urgently requires a proper communications strategy and media development plan. This should be the brief for a media steering group, as I have already described in an earlier post from 2019 (second half). The aims of such a group should include:

  • Taking control of and resetting the media narrative in an appropriate context which is a) accurate and b) sympathetic to patients
  • Addressing once and for all the unresolved legacy and reputational damage caused by the portrayal of sections of the ME patient community as dangerous activists
  • Providing reliable, up-to-date practical and scientific information about the disease
  • Being ready to produce instant, agile and coordinated responses in order to rebut partisan stories masquerading as responsible journalism
  • Obtaining professional assistance for devising an effective lobbying strategy

Good communication needs to be internal as well as external

A strong communications strategy is required to keep members of the ME community informed about ongoing actions, initiatives and planning. At the moment, the community consists of a multitude of disparate groups working in different ways, often duplicating each other’s work and resulting in an inconsistent approach to community concerns.

Whilst there will always be significant disagreements and debate between and within patient groups, a more unified (as opposed to united) range of voices would enhance the credibility of the community. 

As well as an external media platform, an internal communications network would improve the morale of the ME patient community in the UK. The two platforms should be properly joined up, internally and externally, to create a more constructive environment in which to campaign, advocate and support the wider community, and better inform its participants and its wider audiences. 

Many patient groups and charities do already make considerable efforts to keep everyone informed about what they are doing but it’s hard to keep track of all the different channels of communication. A few groups still remain quite closed so it’s difficult to know what may be taking place within their confines. 

Funding 

Funding is always a challenge but it is not insurmountable and I have previously set out a basic pathway in my post Changing the narrative #3. We know that the international ME community is quite capable of raising substantial funds if the cause is properly promoted and has sufficient credibility from within the community and from external donors. Crowdfunding campaigns by David Tuller and Keith Geraghty have proved this in recent years so the claim that we cannot raise funding is no longer justified. 

Some members of the ME community are concerned that this initiative would be wasting precious resources on “just a bit of PR”. Whilst what I am proposing would include input from a professional communications advisor, the proposal involves a much more wide-ranging and detailed strategy than has been tried previously by individual groups. 

If not now, when?

ME has been around as documented illness for nearly a hundred years. The international patient community is still struggling to secure proper recognition and treatment. This suggests that, despite enormous efforts, we haven’t yet got the message right. A radical overhaul of our priorities and strategy is long overdue.

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CHANGING THE NARRATIVE 

This is a summary of the series I wrote in 2019. The full list can be found here.

Changing the narrative #1 Introduction and setting out the rationale for the series

Changing the narrative #2 Examination of the unresolved legacy of the negative portrayal of the ME community

Changing the narrative #3 Proposes ways to address the general challenges faced by the community and reputational damage problem in particular. Includes a simplifed pathway for the process (including funding)

Changing the narrative #4 Follows up on some of the issues raised by the series

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Possible responses to the new NICE guideline for “ME/CFS”

June 22, 2021

THE UPDATED NICE GUIDELINE FOR “ME/CFS” (sic)

Background

In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the existing guideline on myalgic encephalomyelitis (ME), originally published in 2007. Within the UK, Scotland and Northern Ireland have their own equivalent processes and legal systems. This post relates to the situation in England and Wales.

The draft consultation documentsOtVmgpckQr25e6Xxl%PU8A were published on 10 November 2020, followed by a six-week consultation period concluding on 22 December 2020. The final publication date has been delayed several times but is now expected on 18 August 2021.

[NOTE: “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” (NICE’s terminology) is the subject of numerous different names and a confusing variety of case definitions. For the purposes of this blog, it is ME, the complex, multi-systemic neuroimmune disease with which I have lived since 1981.] 

Effect of the new guideline on the ME community

Traditionally, the broader ME community has fallen into two very different camps. In one camp is a large and powerful lobby group of scientists and healthcare practitioners who support a psychosocial approach to treating the illness (the “psychiatric lobby”). In the other camp is the vast majority of the patient community and their carers who, after many decades of neglect and abuse, urgently require a fully-formed biomedical pathway for diagnosis and treatment. 

Since the 1980’s, the dominant narrative – and, alongside that, the outgoing NICE guideline – has been controlled by the psychiatric lobby. The current NICE Guideline Committee for the “ME/CFS” update consists of representatives from all sides of the debate. The draft consultation documents published in November 2020 indicate a shift away from the psychosocial approach to “ME/CFS” by rejecting the much-vaunted but frequently harmful Graded Exercise Therapy (GET), downgrading the utility of Cognitive Behavioural Therapy (CBT) and prohibiting the use of pseudo-scientific “treatments” such as the Lightning Process

The draft also states that all those involved in living with or treating ME should “[b]e aware there is no current treatment or cure (non-pharmacological or pharmacological) for ME/CFS” (page 24 of the consultation document). Apparently, this is the best that the British healthcare system currently has to offer for an illness which has been documented for nearly 100 years, ie. since the first recorded outbreak at the Los Angeles County Hospital, California, USA in 1934. 

This current state of affairs is a shocking indictment, not only of the UK’s healthcare system but also of the members of the psychiatric lobby who have sought and retained control of a far-reaching international narrative, all the while boosting their own careers to the severe detriment of the lives of millions of patients, not just in the UK but worldwide. 

Unsurprisingly, most ME patients continue to press for appropriate recognition of their illness and accelerated biomedical research leading to actual treatments and, eventually, a cure. In the meantime, NICE continues to represent one of many battlegrounds. 

So – looking ahead to the final publication of the guideline in August 2021, what should the ME community be considering?

Judicial review

Judicial review is the most obvious way of challenging NICE’s conduct in drafting new guidance. The process must be started within three months of the action from which grounds for the claim arose (in this case, the final publication date).

There are three grounds for judicial review – illegality, procedural unfairness and irrationality. Incompatibility with human rights is also a consideration. An application must be made to a High Court judge for permission to proceed. Most applications fail at this early stage. The bar is set very high, much higher than in 2007 when a previous attempt was made at reviewing NICE’s conduct.

Challenges can be brought by individuals or a group. Action by a recognised community group is preferable as it depersonalises the process to some extent and tends to have greater credibility. Anyone considering beginning proceedings should seek expert legal advice first. See here for more information about the process of judicial review generally. 

Following the publication of the previous “ME/CFS” NICE guideline in 2007, two members of the ME patient community launched a judicial review of the new guidance which displayed a strong psychosocial bias. The patients’ challenge, which was based on the “procedural unfairness” limb, was unsuccessful and the judgment makes for very uncomfortable reading. 

In the current “ME/CFS” NICE update process, the draft consultation documents were published in November 2020. The psychiatric lobby seems to have become somewhat alarmed by the shift in tone, judging by the increased volume of research touting their own brand of “treatments” and their ramped-up media drive.

The Guideline Committee should not have accepted any new evidence after the close of the consultation period in December 2020. If they have, then, arguably, this becomes a fresh consultation process in which anyone can submit further evidence and comment – and everything gets put back again. 

I have no inside knowledge of what is happening at NICE at the moment. The guideline development process is confidential so it’s anyone’s guess from the outside (although NICE seems to have been making a genuine effort at maintaining transparency throughout this review, as far as is possible). However, it doesn’t take a genius to surmise that the situation in NICE’s virtual “Room where it happens” is pretty tense, with the various camps arguing their own cases.

Until the final publication of the new guideline, it’s impossible to say whether or not pursuing a legal challenge against NICE could be advisable or even desirable, whichever camp you are coming from. As things stand, procedural unfairness looks like the only realistic grounds for challenge and the threshold for getting permission to proceed is very high. 

Whilst there is still an enormous amount in the current draft that is rightly open to criticism, nevertheless, it is a major improvement on the previous version from 2007. For that reason, there would need to be a significant shift back towards a psychosocial treatment paradigm before a challenge should be considered by the ME patient community. 

Media coverage of the new guideline

Whatever the outcome, the final publication of the new guideline is likely to attract some media coverage. How much will depend on whether or not there is a substantial deviation from the draft version and how much forward planning has been done for the big day. 

The psychiatric lobby has had a very sophisticated media machine in place for the last couple of decades. The ME patient community has very little beyond sending out a few press releases and a handful of media contacts, not all of which are sympathetic to the patient agenda. The ME patient community desperately needs a proper strategic initiative and media development plan in place if this situation is to change.  I have written about this at length, particularly in my series of posts from 2019, Changing the Narrative. In Changing the Narrative #3, I have set out a simplified pathway to kickstart the process – but no takers, as yet (as far as I’m aware).

Members of the psychiatric lobby will already be planning their media response to the final publication with alternative spins being prepared, in order to manage whatever the final version of the guideline actually says. At this stage, it is too late to build an entire new media strategy for the ME patient community but hopefully, something useful can be devised by the various groups and/or charities which have some resources available. Positive media coverage doesn’t just happen. Appropriate investment must be made, a strategy must be developed and good contacts cultivated. This takes time, effort and, of course, substantial financial input. 

Again, without knowing what the final guideline will say, the only way to prepare a media response is to plan for all scenarios eg. no change from draft, slight change, significant change or a complete rewrite – in which case, as I said earlier, this could amount to new consultation process by the back door and would be a massive story in its own right, before even starting on the actual wording of the guideline.

Note: if any ME groups do have a mature, well-prepared media strategy under way then please let me know and I will update this post with great pleasure (or not, if you prefer. I’m not trying to give away confidential information here). However, as far as I am aware at this point, there is no such strategy in place.

Factoring in chaos theory

Final publication is still nearly two months away. Any number of things could happen before then and everything that I’ve said here could be wildly out of date or totally wrong. However, continuing to plan ahead for different outcomes is the least that the ME community can do to be prepared for whatever eventuality occurs next. 

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A short post on long Covid media exposure

February 19, 2021

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times”  ~  Valerie Eliot Smith 2019

Yesterday (18 February 2021) in the UK, there was a media blitz on the experiences of those suffering with the highly distressing symptoms of long Covid. This included children, healthcare workers and teachers, with contributions from various experts on the condition.

I watched, listened and read. The stories were tragic and heartbreaking. Those living with long Covid are not receiving proper acknowledgment or treatment. Those who believe they contracted the condition via their workplaces (healthcare and education) are already seeking financial compensation for their extensive losses.

Most people who live with the disease myalgic encephalomyelitis/ME (as I have since 1981) are likely to have been absorbing these accounts with mixed feelings. The stories were horrific and the lack of proper medical recognition and care were deeply troubling. But these stories are almost identical to those with which people with ME have been living for many decades. And yet – ME patients are rarely heard or seen.

[Note: ME is sometimes referred to – confusingly – as “chronic fatigue syndrome” or “ME/CFS”]

So how did the long Covid stories get told?

This is no accident. Members of the long Covid community have organised themselves and are managing a well-orchestrated media campaign. This requires motivation, funding and appropriate advice on media handling. The results are highly visible – although, of course, whether or not this campaign achieves its objectives (whatever they are) remains to be seen.

Long Covid is a painfully current topic which is dominating the news in most countries. This gives it an enormous advantage over the ME patient community which has been in existence as a documented group for nearly a hundred years. This means that its novelty and currency as a news issue is almost non-existent, unlike long Covid.

What about ME patients?

Efforts to tailgate on long Covid issues are misguided. Over the years, the ME community has become a marginalised player on the international stage. Compared with visibility of the long Covid community, ME patients are a mere background blip.

Most patients with long Covid will go on to recover, although it may be a long, hard road. Only a few will ultimately be diagnosed correctly with ME. Conflating the two conditions may be detrimental to both patient cohorts. However, appropriate early management of the conditions may involve similar strategies.

Why the difference between the two groups?

This state of affairs is a direct result of decades of reputational damage inflicted on the ME patient community by so-called international ME and/or CFS “experts” (including, historically, Dr Anthony Fauci, Director of the NIAID in the US). Those “experts” retain great power and influence worldwide. Their reputations could suffer if ME patients were able to change the narrative and highlight their real status as a neglected and stigmatised group which has so far been denied respect, recognition and long-overdue “moonshot” style support.

The status quo is completely asymmetric; the balance of power remains hopelessly skewed in favour of the “experts” who retain power and against the interests of the international ME patient community.

About myalgic encephalomyelitis/ME

Many people who live with ME first become ill following an infection, similar to some living with long Covid. Although the initial infection may appear to have receded, patients do not then recover from the often devastating symptoms which persist, and may be lifelong. The range of symptoms is wide and the disease can be fatal. Prevalence estimates vary; the UK rate is generally put at around 250,000 patients, about twice as many as those with multiple sclerosis/MS.

The recovery rate from ME is estimated to be around 5%. As a result, the ME patient community is very familiar with the long-lasting effects of an initial infection which healthcare professionals frequently do not understand and often do not take seriously.

Can the ME community change the way it is viewed? 

Yes. I have advocated over and over again on this blog and elsewhere for a properly planned and executed media strategy. This is the only way to change a deeply entrenched cultural perception of the ME patient community as a nuisance group, undeserving of meaningful research and real treatment options. It is a huge challenge and one which is simply not being addressed. The small amount of media coverage which is achieved by various charities and individual patients is a drop in the ocean of what is actually needed.

However hard it is to see the extensive coverage of issues relating to long Covid and the shoddy treatment which many patients are receiving, the real frustration for me comes from knowing that, unlike the long Covid community, the ME community is failing to use even the most obvious routes to changing its own situation.

In 2019, I wrote a series of posts addressing the media challenges faced by the ME community. A specific pathway was laid out in the third part of that series (second half).

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Five years ago, in February 2015, I wrote this:

Whatever happens next is certainly too late for the millions of patients who have already died during the last eighty years. Most of them never had their illness validated nor were they treated with respect and compassion in their lifetimes. And what assurance is there that anything concrete will happen during the next thirty years? Another generation of us – including me – will have died before then. That sucks.

Professor Garner, The BMJ and me: an alarming flip-flop on recovery from long Covid

February 1, 2021

As the year 2020 began, so did the story of the global pandemic which is now known generally as Covid-19. One year on, the world is still coming to terms with both the short and long term effects of the disease. The latest recorded worldwide death rates have exceeded two million and the disease is still claiming more victims. Populations everywhere are having to adjust their patterns of behaviour and learn to accommodate a new world order in global public health.

Long Covid

Many individuals are still reeling from the after-effects of the disease. Some patients who were not sick enough to be hospitalised still remain severely affected by a condition which has come to be known generally as long Covid. Long Covid describes a state whereby the initial virus appears to have gone but serious, life-limiting symptoms continue and resumption of normal activity remains frustratingly out of reach.

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Professor Paul Garner

Paul Garner is Professor of Infectious Diseases at the Liverpool School of Tropical Medicine. In March 2020, he contracted Covid-19. In May 2020, he began writing and broadcasting about his ongoing personal experience of living with long Covid. Like many others, he was clearly suffering considerable pain and distress from the symptoms that were continuing to prevent him from going back to his normal life as a busy academic and researcher. He also talked about the lack of knowledge and understanding from the medical profession which was causing him further distress.

Professor Garner was very frank about what he was going through. His intention appeared to be to open up a long overdue public conversation about the long-term effects of viruses in general and Covid-19 in particular. Representatives from a variety of patient groups and healthcare professionals responded, including members of the ME (myalgic encephalomyelitis) patient community.

From this point onwards, Professor Garner embarked on a journey which ended in a very different place from where it had begun.

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About myalgic encephalomyelitis/ME

Many people who live with ME first become ill following an infection. Although the initial infection may appear to have receded, patients do not then recover from the often devastating symptoms which persist, and may be lifelong. The range of symptoms is wide and the disease can be fatal. Prevalence estimates vary; the UK rate is generally put at around 250,000 patients, about twice as many as those with multiple sclerosis/MS.

The recovery rate from ME is estimated to be around 5%. As a result, the ME patient community is very familiar with the long-lasting effects of an initial infection which healthcare professionals frequently do not understand and often do not take seriously.

[Disclosure: I have lived with ME in varying degrees of severity since 1981. For more information about my background go to About.] 

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The BMJ‘s Opinion series

Having initiated this public dialogue, Professor Garner went on to write a series of six personal blog posts for The BMJ’s Opinion section about living with, and managing, long Covid. He described his personal journey through a very difficult time with great sincerity. He expressed appreciation for the various groups and individuals who had reached out to him, including representatives from the ME community.

On 19 May he wrote of the damage caused by over-exertion in an effort to recover:

I felt aggrieved as I had not done much at all. “You don’t understand pacing”, the ME Association adviser Charles Shepherd told me. He explained that this “post-exertional symptom exacerbation” is a good signal for people with the chronic fatigue syndrome/ME [sic]. The difference is with covid-19, the fatigue is happening at the same time as other dangerous complications.

And on 23 June:

What is worse is that there is increasing evidence that some doctors are dismissing this illness…….Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19. [my emphasis]. Yet for us “long haulers” the symptoms are the same, the management schedules are the same, even if we don’t quite fit the somewhat arbitrary definition of “chronic” at 4 months. 

A post-viral tsunami is hitting our health services right now, yet in the UK it doesn’t even seem to be on the national agenda. NICE have issued 28 rapid reviews and guidance on covid-19 this year, but their guidance on the chronic fatigue syndrome/mylagic encephalomyelitis [sic] is 13 years old. There is little evidence in the UK of a co-ordinated response, that is truly multidisciplinary, involves organizations such as the ME Association, and includes patients…….This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. [my emphasis]. We have messed up before, lets’ not do it again with long term covid-19 illness. 

And on 4 September:

Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “Exercise therapy for chronic fatigue syndrome:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated). 

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area…….Charles Shepherd at the ME Association helped with explanations of the delayed payback with post-exertional malaise. This helped work out why I felt worse on some days, but not always—there is still a random element. Jennie Jacques, Open Medicine Foundation [which supports research into ME] Ambassador, gave me good advice, and has written an excellent narrative online about how to pace.…….

I thought this was going to be a short illness. I wrote my first opinion piece after six weeks of unrelenting illness, and am now writing at six months, with an illness that resembles ME/CSF [sic].

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My communications with Professor Garner

As a result of this last post on 4 September, I contacted Professor Garner directly. This is an extract from my first email:

…I have followed your discussions of your own condition and of Covid, plus its after-effects. I am so very sorry that you have been so ill for so long and that you received such inappropriate advice about management and recovery from the illness. All patients deserve so much better. 
I believe that some on Twitter have suggested that you contact me because I am a barrister. While I am indeed a barrister, the focus of my work is on the politics and history surrounding ME and related conditions. I also concentrate on ways in which we should be trying to change the toxic narrative which has defined the illness for decades. I follow the science although I do not claim any specific knowledge or expertise in that domain. My blog (see link below) reflects some of the work I do. 
If you think that I could assist you with your work on Covid/PCS/PVS/ME, please feel free to contact me. Whilst I am limited in what I can do because of my own health (ME in varying degrees of severity since 1981), I always try to respond to requests for assistance. 

He responded and over the next few weeks we had four discussions by email. Two of these were one-to-one and the other two were as part of a group with two other members of the international ME community. The exchanges were lively and good-natured and, for the most part, positive and constructive.

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The BMJ’s latest Opinion piece

I learned from an email autoresponse in early January 2021 that Professor Garner had contracted dengue fever.  On 25 January, another post appeared in the BMJ series entitled “Paul Garner: on his recovery from long covid“.

The tone of this new post was markedly different from the previous ones. Professor Garner’s journey to recovery over the preceding nine months had been substantially rewritten and was at odds with his observations in earlier posts. The post also launched a surprising attack on the ME community.

…Leaflets from ME/CFS advocacy groups had advice about not overdoing it. I learnt that the exhaustion I experienced after trying to exercise at week seven is termed “post exertional malaise” and is a key symptom of ME/CFS. I read that if I pushed myself, the raised heart rate would make me ill. I decided that dominating the virus did not work.

While pacing made sense initially, I became obsessive as the months passed in an attempt to avoid my symptoms. I started unconsciously monitoring signals from my body. I sought precipitating causes. I became paralysed with fear: what if I overdid it? I retreated from life. I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria. I wasn’t depressed, but mentally low, and relapses were more common…….Seven months after the initial covid-19 I was referred to a CFS/ME specialist. The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest. [my emphasis]

I knew the symptoms were real, but somehow these pure biomedical explanations felt wrong. While waiting for the appointment, I cast around my international network of medical evidence specialists for help. I was put in touch with a PhD candidate in psychology from Norway who had completely recovered from post viral fatigue syndrome (CFS/ME) years ago and offered to share the recovery story. The story was very similar: no previous illness, no psychological problems, only long-lasting debilitating symptoms after an infection. I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” I thought back to an earlier experience in my 30s with being able regulate my tinnitus after quinine, and said yes, straight away. 

This opened the door that led to my recovery. I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious…….

I know ME/CFS is associated with a variety of viruses and possibly other factors too, and recognise that the postviral syndromes have a wide spectrum of clinical manifestations. My experience may not be the same as others. I feel that I have looked down the barrel of the ME/CFS gun and disarmed it…….

I write this to my fellow covid-19 long haulers whose tissues have healed. I have recovered. I did this by listening to people that have recovered from CFS/ME [sic], not people that are still unwell [my emphasis]…

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The takeaways from that most recent post

  1. Professor Garner had long Covid from which he appears to have recovered
  2. His personal recovery journey has been long and painful. This reflects the anecdotal experience of others
  3. He now believes that the ME community, rather than assisting him, actually hindered his progress by providing him with information about ME as a biomedical illness thereby steering him away from the therapies which apparently have led to his recovery
  4. The contact from the ME community was unsolicited and unwelcome, despite his media appearances initiating a public discussion about the difficulties of recovery
  5. By extension, anyone with a similar condition – including ME – has the capacity to recover if only they are willing to follow the same (unspecified) process as he did, a process which cures by using the power of positive thinking to overrule negativity embedded in patients’ nervous systems

Points 1 and 2 are unremarkable. Points 3 and 4 are gratuitously offensive. Point 5 is irresponsible in that it promotes the theory that mind can cure body if only the patient is willing to embrace the process.

The view from England’s National Institute for Health and Care Excellence (NICE)

The use of an “exercise + willpower” approach is well established as potentially insidious when used as a recommendation for recovery from long-term post-viral syndromes in general, and for ME in particular. When this approach is adopted by a scientist of Professor Garner’s standing, it becomes downright dangerous.

The outdated NICE guideline for “chronic fatigue/myalgic encephalomyelitis (or encephalopathy)” [sic] or “CFS/MEis in the final stages of being updated. The last version was issued in 2007. The draft version of the new guideline was released in November 2020. The final version is due in April 2021.

The new draft guideline indicates that Graded Exercise Therapy is being removed as a treatment recommendation and that Cognitive Behavioural Therapy is being downgraded from a treatment aimed at brain retraining to a purely supportive therapy.

The draft guideline also specifically removes pseudoscientific treatments such as the Lightning Process (LP) as treatments for “ME/CFS” (as it is now termed). The process which Professor Garner used to achieve his recovery from long Covid sounds very similar to the LP. It seems that even NICE is not inclined to agree with Professor Garner on this point.

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The role of The BMJ 

The BMJ is one of the world’s oldest and most respected general medical journals. In publishing Professor Garner’s most recent Opinion piece, it assumed certain responsibilities.

Legally speaking, the piece was acceptable. Morally and ethically, it is more dubious, given its unwarranted attack on the ME community. However, the greatest criticism must be reserved for its editorial function. Some of the content of the piece was significantly at odds with his comments earlier in the series. This is editorially sloppy and does not reflect well on The BMJ‘s standards of oversight.

Unsurprisingly, there were many comments from readers below the post. The moderators exercised their legal and editorial judgment in carrying out their duty to ensure appropriate standards were met. Why, then, was the same level of editorial judgment not applied to the original post? Had that been done, most of the comments would have been unnecessary and an international patient community would not have felt so stunned and betrayed by what they had read.

Conclusion

Professor Garner’s post of 25 January 2021 demonstrates an extraordinary lack of empathy for a patient community with which he had previously identified so strongly. As to what caused such a profound and damaging volte-face, one can only speculate.

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Due diligence

The day after I read Professor Garner’s piece of 25 January, I sent him the following email. I have twice followed it up, asking for a reply. On the second occasion, I indicated that I would be writing a blog post about what he had said. I then received a brief response which failed to address adequately the points that I had raised.

Dear Paul
I was interested to read your 25 January BMJ Opinion piece about your recovery from Long Covid. I’m very glad to learn that you are feeling better. However, I was extremely disappointed to see your surprising attack on the “ME/CFS” community.
Responses to the specific points raised by your article are being posted in the comments section and on Twitter so I won’t repeat them here. However, there is one particular issue which I need to address with you directly.
You began discussing your situation as a Covid “long-hauler” in both broadcast and print media in May last year. This activity suggested that you were keen to engage in a public debate about long Covid and, as a related issue, post viral/chronic fatigue syndromes and ME. Having publicly invited that discussion, it seems highly disingenuous to describe the responses you received from the ME community as “unsolicited”.
As a result of your media appearances, I contacted you and you replied. Our subsequent email exchanges were undertaken in mutual good faith (certainly from my side) and seemed both positive and constructive. At no stage did you appear to be unwilling to participate in discussions, either in one-to-one conversations or as part of a group.
Unfortunately, your article suggests that my assumption about mutual good faith was mistaken. I would appreciate clarification from you on that point.
Finally, I would remind you of our group conversation of 18 September 2020 with [X and Y] when I said this:
“My guess is that many people who are experiencing long Covid will eventually recover, given the right management, although it could be a long, hard road. Eventually, there may be a small but significant number of long Covid patients who meet the criteria for ME (as with SARS-cov-1 and other viruses), including those diagnosed with CFS or similar. As you say, Paul, “[t]his is a spectrum of disorders”. Nevertheless, I’m unconvinced that it is a “one size fits all” situation.”
Your recovery seems to accord with my prediction but I’m unclear as to how comments such as this have provoked your gratuitous assault on the ME community.
I look forward to hearing from you.
With best wishes for a continued recovery.
Valerie

NICE, the media and the cultural problem of myalgic encephalomyelitis (ME)

December 14, 2020

RE-CAP: the ongoing NICE guideline in development (GID) process

Read more…

“Ice Cream & Hypothermia” revisited + a chilling NICE consultation process

November 19, 2020

FROZEN (Kazakhstan 2019)

NOTE: this post runs at 2270 words. It falls naturally into two sections of approximately the same length. 

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The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is necessarily limited by health issues.

In recent months, I have had an increase in pre-existing non-ME health problems as described in this post from 2012. The full text (1200 words) of that post appears at the end of this one. The current problem is being addressed.

Meanwhile, a few words about the National Institute for Health and Care Excellence (NICE). Much has already been written elsewhere on this. Below is my own short take on the subject:

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CONSULTATION STAGE OF NICE’S “GUIDELINE IN DEVELOPMENT” PROCESS ON “MYALGIC ENCEPHALOMYELITIS (OR ENCEPHALOPATHY)/CHRONIC FATIGUE SYNDROME”[sic] 

Let’s just get the tedious terminology out of the way:

  • “The National Institute for Health and Care Excellence (NICE) is an executive non-departmental public body of the Department of Health in England…which publishes guidelines [on matters of health and social care]…” (Wikipedia)
  • “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” is subject to around twenty different case definitions. For the purposes of this blog, it is ME, the complex neuroimmune disease which I have lived with since 1981. A good source of information about ME is available here.

In 2017, NICE began the process of updating the existing guideline on ME, originally published in 2007. The existing guideline is dangerously inaccurate and outdated. It remains in place until the new one is published.

After several postponements, the draft consultation documents were finally published on 10 November 2020. This is followed by a six-week consultation period, concluding on 22 December 2020. The final publication date is expected to be 21 April 2021.

With my health in its current state, I haven’t yet been able to read all of the documents. The observations below relate to the draft guideline document unless specified otherwise.

It is important to remember that the new guideline is a draft for consultation purposes and not the final version.

A brief scan of the relevant available information reveals the following points of significance (this is just a snapshot: there are many others):

  • NICE has confirmed that there is currently no treatment or cure for ME. A shocking admission for an illness which has been documented for nearly a century. That the focus of this guideline remains on management rather than treatment for a longstanding illness of this severity is completely unacceptable.
  • Graded Exercise Therapy (GET) should no longer be recommended as a treatment for ME patients. The scandal here is that it was ever offered in the first place when it clearly caused severe deterioration and, in some cases irreversible damage, to ME patients.
  • There is still an emphasis on increasing activity as a form of illness management. This leaves open the possibility of further damage from ill-informed therapists at the so-called specialist CFS/ME centres.
  • Cognitive Behavioural Therapy (CBT) remains as a treatment option but downgraded to a supportive therapy of choice by the patient, rather than an attempt to brainwash very sick patients into believing that they’re not really ill, they only “think” they are. This still leaves open the possibility of continuing inappropriate interventions by misguided CBT practitioners.
  • Pseudoscientific therapies such the Lightning Process (LP) are removed as treatment options. Again, the scandal is that the LP was ever considered appropriate at all. Some ME patients have described how they were encouraged or even coerced into paying hundreds of pounds to take part in a process which many then found to be exploitative and abusive.

My assessment so far

A couple of useful steps forward alongside a lot of worthy but anodyne waffle about proper support and social care for ME patients.  Great in theory but how much will actually translate into better practices, improved conditions and – above all – serious biomedical research on a scale which properly reflects severity and disease burden?

The section on research recommendations is – to put it bluntly – pathetic. However, there are some pretty damning observations in the evidence review document.

The challenges and stigma attached to the illness are acknowledged in the NICE draft. However, my view remains that, until the decades of reputational damage experienced by the ME community are addressed by the institutions which have enabled abusive behaviour towards patients, then little will actually change on a day-to-day basis. I have written about this in my series of posts from 2019 “Changing the Narrative” and my position has not changed since then.

Hopefully I will be proved wrong after the final version of the guideline is published in 2021.

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A note on “Post-COVID-19 syndrome”, also known as “Long Covid”

There has been much discussion in recent months about Post-COVID-19 syndrome or Long Covid as some prefer to call it. This final scope document from NICE, issued in October 2020, sets out the current position in England, Wales and Scotland.

ME is frequently characterised as a post-infectious illness or disease. Some Covid “long-haulers” have already been diagnosed with ME. More may follow. The extract below is taken from my comments in a group email discussion from September 2020:

“My guess is that many people who are experiencing Long Covid will eventually recover, given the right management, although it could be a long, hard road. Eventually, there may be a small but significant number of Long Covid patients who meet the criteria for ME (as with SARS-COV-1 and other viruses), including those diagnosed with CFS or similar…..This is a “spectrum of disorders”. Nevertheless, I’m unconvinced that it is a “one size fits all” situation.
For my part, I have enormous sympathy and concern for the Long Covid community and I am happy to do whatever I can to advise and assist. However, my primary focus will always be on the continuing challenges faced by the international ME community. In April this year [2020], just after worldwide lockdowns were imposed, I wrote this in an email exchange with a director of one of the ME charities: 

It’s possible that more attention will be drawn to the long-term effects of post-viral conditions but it will take some time for that to become apparent, once the current crisis has abated. It’s also possible that ME-specific issues will [yet again] get sidelined in the scramble for resources in an increased awareness of general post-viral issues.” 

And finally, lest we forget: “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019 

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Ice cream and hypothermia: a very personal story

NOVEMBER 1, 2012

When I was a child, living in Australia, I needed to have my tonsils removed. I was nine years old; I had been ill for quite some time and was very frightened at the idea of surgery. Everyone said to me that it would be fine and I would get lots of ice cream afterwards to cheer me up and make my throat feel better.

I had the operation. I was in hospital for four days and caught a cold because the nursing staff insisted on leaving a window open next to my bed. I felt terrible and my recovery was slow. And I never got any ice cream.

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We have just had our first bout of cold weather here in London. I have come to dread this time of year as I now have a tendency to become clinically hypothermic in a very short space of time.

I have been through a total of eight operations in my life so far. Five of these took place between 2004 and 2008. The second of those was in February 2005. I was admitted to hospital in London for the umpteenth time with acute, unexplained symptoms, on the day after the funeral of my closest friend. After a week of being unable to take in any food or liquid, I was very weak and in great pain. In desperation, my consultant (whom I knew well by this time) decided to open me up for the second time – and this wasn’t the last time he had to do this. He emphasised that I might not survive the surgery.

The operation turned out to be simpler than anticipated but I experienced severe surgical trauma because of my weakened state. My body temperature plummeted to around 31 degrees celsius (normal body temperature is around 36.8 degrees). My heart was doing some strange things too. I began to regain consciousness at this point and I remember shivering violently and uncontrollably for more than an hour while the nursing staff gradually brought my body temperature back to normal and my heart settled. My recovery from this operation was slow and tortuous. On the day of my operation, the partner of my dead friend checked into a hotel and killed himself. I had been powerless to comfort him in his grief.

A few weeks later, I tried a short walk outside for the first time. The weather was cold and I began to feel unwell quite quickly. When I got home, I checked my temperature as I thought I might be coming down with a post-operative infection. To my surprise, it wasn’t high: it was low – hypothermically so (ie. below 35 degrees) – although I had been outside for only a short time.

And so it has remained ever since. My personal thermostat was blown. I am mostly OK in temperate climates but even the generally moderate temperatures of a normal British winter are enough to cause me significant problems. If I am outside for more than a few minutes, my core body temperature drops very quickly. It can even happen inside, if the heating is inadequate.

I have discussed this problem with various doctors. No one can explain why it happens and actually no one is very interested, as I’m clearly still alive and apparently functioning “normally”. The fact that I have to manage this problem throughout the winter months by only staying outside for very limited periods of time – well, that’s just too bad. But each time it happens, a little more of my precious energy is sapped and my already restricted life with Myalgic Encephalomyelitis (ME) feels even more depleted.

If I stay out for too long, I begin to enter a catatonic state whereby I lose awareness of what is happening; at this point it can become dangerous. I then have to very deliberately monitor myself and everything that is happening around me and get myself back into a warmer environment as quickly as possible. No amount of extra clothing prevents this from happening.

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In October 2008, I was back in hospital for my eighth operation. This was a second attempt at correcting a cardiac arrhythmia, an earlier try having been unsuccessful. After the previous failure, I was paralysed with fear as the first experience had been truly awful and my recovery – such as it was – painfully slow. Yet again, I checked my will and the memorial service which I had prepared three years earlier. And again, my husband and I exchanged our words of farewell.

This time, however, I discussed my situation with the surgeon (whom I shall call “Tom”) and the anaesthetist. It was the same team as in the previous attempt so I already knew them. I explained to Tom about the hypothermia problem and queried the fact that operating theatres were always, in my experience, so cold. Tom confirmed that there was no clinical need for the temperature in the theatre to be kept so low and promised that he would ensure that a higher temperature was maintained throughout the procedure. I also requested that he would stay on afterwards, until I had come round in the recovery room (which is a lonely and terrifying place), so that he could tell me personally how it had gone. He agreed.

Somehow, I persuaded my legs to carry me into the theatre. About three and a half hours later I began to come round in recovery; Tom was there, waiting, as promised. I then did what I always do after an operation and promptly burst into tears, my standard response to surgical shock. I knew that Tom was emotionally reserved and not inclined towards displays of sentiment but I urgently needed reassurance. I held out my hand (because of the anaesthetic, I was still unable to speak at this point). He took it immediately and held it for a few minutes and told me that all had gone well. The comfort which I derived from this simple act of humanity was indescribable.

This operation was successful and I recovered rapidly. I later learned that, despite the fact that the theatre staff were roasting, Tom insisted that a warm temperature be maintained to reduce the risk of my becoming hypothermic again. He had kept his promise.

Since this last operation, I have been left with significant cardiac discomfort but the dangerous condition has been alleviated. I had hoped that perhaps my ME symptoms might also improve as a result but they have actually been exacerbated by the trauma. It had been impossible to evaluate those symptoms objectively in the preceding years because of all the other acute, ongoing problems. I had allowed myself to entertain the possibility that the ME (which I have lived with since 1981) might have improved; however, it was not to be. I now also live with the permanent legacy from so much surgery – including the hypothermia.

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After that final operation in 2008, I was out of the recovery room and back in my own room within a couple of hours. Sarah, the Australian nurse who was taking care of me, asked me if I was hungry.

And so, after forty-two years, I finally got my ice cream.

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“A Demon on My Life”: review of an online play about living with ME (myalgic encephalomyelitis)

July 21, 2020

Note: the disease myalgic encephalomyelitis (ME) is often referred to – inaccurately and confusingly – as chronic fatigue syndrome (CFS) or ME/CFS or CFS/ME. It is likely that there are many crossed misdiagnoses of both illnesses.

ME has been well documented since an outbreak in Los Angeles, California, in 1934 but, shockingly, is still often perceived as a “controversial” illness which was only “discovered” in the 1980’s. For more information follow this link

I have lived with ME in varying degrees of severity for nearly forty years. For more information see About.

A Demon on My Life_The Nightmare by John Henry Fusili

“The Nightmare” by John Henry Fuseli – 1781. Inspiration for the concept of “A Demon on My Life”

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JB Bruno is a long  established film director and writer. In 2019, he decided to return to theatre work. A friend of his had lived with ME for many years. Mr Bruno began to research this disease and its background and realised that this was a story that needed telling.  As a result, he wrote and directed the stage play “A Demon on my Life“.

 

The play was adapted for online viewing and livestreamed via Zoom, free of charge, on 20 and 22 June 2020. The second performance was recorded and is available on YouTube here.  The full cast list, credits and other details are in the information beneath the video.

The storyline

Liz (played by Leigh Fitzjames) is a professional dancer in her thirties. She lives in New York with her husband, dancer/choreographer Mark (Darren Lee). Liz has lived with ME for some years already and now learns that the illness has reached a stage where it is unlikely that it will ever improve.

Liz and Mark are trying to make sense of the life-changing effects of the illness whilst also learning to navigate the challenges of the caregiver/caretaker relationship.  Their partnership, which began as one of equality, now feels very out of balance, especially to Liz. They have learnt that they must deal with an illness which doctors frequently misdiagnose and the world mostly misunderstands – including even close friends and family members.

Liz and her friend, Katie (Emmy James), communicate regularly via Skype. Katie also has ME and is even more severely affected than Liz. Katie’s story becomes an integral part of the plot and reflects some of the more extreme aspects of living with ME and it is she who identifies the “Demon on My Life” as a metaphor for the illness.

The play is interspersed with powerful dream sequences, filmed in black and white. They are haunting and reflect the sense of unreality which is often experienced by those who live with serious chronic illness.

Review

The presentation of this play presented an unusually complex logistical challenge. The actors were playing their roles from seven different cities in three different countries and from multiple time zones. However, as I wrote in an email to Leigh Fitzjames after I had watched it for the first time:

Obviously, there were some digital glitches but it was an amazing technical achievement to bring a stage play to screen from so many different locations and still retain both its message and its heart.  

In his introduction to the video, JB Bruno highlights the range of practical and social issues raised by COVID-19. He also considers how some of them reflect the isolation and other psychological challenges with which ME patients are all too familiar and from which, unlike the healthy population, they are unlikely to be released as and when the pandemic begins to subside.

The play explores themes which will be familiar to most ME patients – the stigma and disbelief surrounding the illness, the desperate search for treatment no matter how expensive or outrageous, the Herculean effort required to attend a social occasion and the payback afterwards, the crass comments of old friends and new acquaintances, the devastating consequences of the “push/crash” syndrome – and, inevitably, grief and loss. As the play moves into the third and final act, it embraces a darker theme, one which touches on our deepest fears and reveals the painful realities of living with this disease.

The more philosophical themes are addressed by way of dialogues between Liz and Mark and their mentor, Bonnie (Blanche Baker). It’s a somewhat contrived device but achieves the desired result of airing the less tangible aspects of life with ME, such as the ambiguous roles of hope and acceptance in living the best life possible. It’s a little confused and clumsy but it’s an honest attempt to initiate a vital discussion of painful issues and unanswerable questions.

The ending is, inevitably, unsatisfactory – which is as it should be. JB Bruno has resisted any temptation to provide resolution or closure, understanding that, in this context, such an imposition of order from chaos would be wholly unrealistic.

The final words of the play are spoken by Liz. Throughout the performance, Leigh Fitzjames’ portrayal of Liz is perfectly-pitched, beautiful and heartbreaking. The entire cast was superb throughout this extraordinary performance but it is fitting that the last word should emanate from Liz as the central protagonist in this nightmare existence.

Liz’s final utterance, “I can’t disappear“, is threefold. It is a simple statement of fact. It is also a cry of desperation from the depths of a shattered soul. However, above all, it is a rallying cry, an exhortation for the ME community to reject the cloak of invisibility invested by the illness and to continue to work towards changing its trajectory whilst living the best lives that we can.

Will this play change the course of that trajectory? Probably not – and it would be unrealistic to expect as much. Can it be used to explore the central issues affecting the lives of the millions who live with this illness 24/7 and stimulate debate and understanding both inside and outside the community? Yes, if used with discretion, it probably can.

Will you agree with everything in the play? Probably not: I certainly didn’t – but, for these purposes, that is irrelevant. First watch it, if you haven’t already, and decide how best you can make use of this unique contribution to the lives of the “Millions Missing“.

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Structure of the play: pace it to watch it

The play is about 1 hour 45 minutes long. It is divided into three acts of just over 30 minutes each in length. This makes it reasonably easy to watch in manageable chunks which is helpful for ME patients who may have difficulty with concentration and memory. I watched it twice, each time over several days. Splitting it up like this worked fairly well although it is still a huge challenge for the more severely-affected.

The technical challenge of this online performance was considerable. Inevitably, internet connections keep dropping, sound disappears, voices get out of sync and those unfamiliar with Zoom may find the shifting appearance of images on the screen slightly disconcerting. I can only say persist with it. Yes, some of the dialogue gets lost but the overarching narrative and emotions are still sufficiently powerful to justify the effort involved.

The second performance was followed by a one-hour discussion with the cast and led by JB Bruno. It also features a Q&A with Dr Courtney Craig, herself a long-term ME patient, and others who were involved in the production of the play. I was flagging by this stage and the sound quality was poor but it’s worth pursuing if you can.

Watch the online performance and subsequent discussion from this YouTube link.

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FUNDING AND FUTURE PLANS: from the original press release

 

The production aims to do a theatrical run in New York City when theaters are open again. At that time, the company also want to have the funds to livestream select performances to a ME/CFS audience that would not be able to make a trip to a theater.

10% of all proceeds will go to an Solve ME/CFS Initiative, an advocacy group for research, treatment and awareness.They and other advocacy groups will be sharing the link so that people with ME/CFS can join at no charge.

All performers will be paid a stipend out of monies raised as well.

 

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