A manifesto for change: from strategy to inquiry

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

NOTE: the illness termed “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” or “ME/CFS” by England’s National Institute for Health and Care Excellence (NICE) is the subject of a wide array of 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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In August 2022, this blog will have been in existence for ten years. My research has been ongoing for far longer than that. The thesis of my work, as documented within this blog, is that, for a variety of reasons, the progress of change for the international ME community during the last fifty years has been painfully and unnecessarily slow.

The ME community urgently needs to adopt a more assertive, proactive and robust approach to its activism. A much more targeted media presence should be cultivated and a complete re-set of the toxic culture surrounding ME is urgently required. This approach should be mediated by obtaining independent, professional advice on strategic planning, media handling (digital + legacy) and political lobbying.

The current practices by many groups of picking off individual journalists who may appear to be sympathetic or sending out huge numbers of unpersonalised media releases is demonstrably unsuccessful. Equally, defensive responses to unhelpful and inaccurate articles, whether in writing, by interview or on social media, are clearly not cutting it, judging by the very mixed bag of media coverage over the last 40-50 years.

Whilst high-quality research at an appropriate scale is to be welcomed (such as the ongoing DecodeME study in the UK), state funding for research remains derisory and private funding is necessarily limited. Total funding in all countries falls far short of being commensurate with disease burden. This will not change at any speed or scale until the entire culture surrounding this illness is changed.

The ME community must take control of the narrative and keep it where it belongs – with patients.

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Progress?

ME has probably existed for centuries. It was first documented in 1934, nearly a hundred years ago. However, in 1970, progress of the illness was hijacked by psychiatrists and their subversion continues to this day.

The new NICE guideline (see note above), which was published in October 2021, was a considerable improvement on the previous version from 2007. Nevertheless, it stands as a deeply disturbing testament to the shocking lack of progress over the last fifty years.

All that is available generally is management of symptoms or individual trial and error with unproven treatments (for those who are able to access and afford them).

These are the highlights of the new NICE guideline:

• The “improvement” in the new guideline is that, unlike its 14-year predecessor, it no longer recommends treatments which are known to be actively harmful to patients
• It demonstrates that, despite nearly a hundred years of accumulated knowledge and documentation, there is still no clear diagnostic pathway, treatment or cure
• Paragraph 1.1.2 states that it must be recognised “that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.” It should also be noted that “people with ME/CFS may have lost trust in health and social care services and be hesitant about involving them.”

How many more times will it need to be said? AFTER NEARLY A HUNDRED YEARS, THIS IS NOT OK.

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Beyond the new NICE guideline

In recent years, the various ME charities and patient groups worldwide have increased their focus and resources on advocacy and media strategies. However, whilst these efforts are laudable, they are not at a scale which will achieve the requisite changes at the necessary pace.

There is also insufficient evidence of the deep level of understanding of strategic planning and expertise in media handling which is required to address the challenges and secure the change of narrative so urgently needed by the international patient community.

The degree of sophistication in approach varies between individual organisations and between countries but overall strategies are failing to protect and promote the interests of patients.

“The politics of health is complex and nuanced and there are many, many competing interests. But ME has been at the bottom of that pile of interests for many, many years. It’s time that changed.” ~ Valerie Eliot Smith in the 2021 film “The Tangled Story of ME/CFS” (follow link to view)

In July 2021, I wrote a post exploring where the ME community should be focusing its efforts after publication of the NICE guideline. Below is a substantially revised and updated version of that post.

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

The determination of this powerful group to exert inappropriate influence over public policy was nowhere more evident than in its attempt in 2021 to interfere with the final publication of new NICE guideline.

This insidious attempt at subverting the process delayed the publication by nearly three months and succeeded in further diluting the original text. It wasted time and money, and caused enormous unjustifiable distress to an already traumatised patient community.

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

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

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Proposed MEComms

Following an earlier 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 used previously. ME charities and groups do have media strategies in place but these are much smaller than what I am proposing and have insufficient impact to facilitate change at the required level.
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 previous posts Changing the narrative #3 and #4 (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 ME and its patient community. This is the first stage in creating a positive and constructive environment with the 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. However, as ME patients have been so traduced in popular culture by the hostile environment 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, attempted to establish 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 absolutely 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  is the best option available to the ME community as a long-term goal on which to focus.

[See end of this post for some FAQ’s on public inquiries including, right at the end, a brief consideration of the Covid-19 inquiry]

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A MANIFESTO FOR CHANGE: THE REMIT

From media strategy to public 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 be ready to 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, and by, the media
5. Once 1-4 above start to take effect, commence a lobbying programme with a view to securing a full public inquiry

This will take time, effort and, controversially, a long overdue review and redistribution of resources.

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PUBLIC INQUIRIES – FAQ’s

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?  

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 fall within the scope of the inquiry. However, anyone outside that who wants to be represented has to cover their own costs. See more at this link.

What is the likely time scale?

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.

What about the UK public inquiry into Covid-19? 

The draft terms of reference for this inquiry are now available. There is only the briefest mention of so-called “long Covid”. Whilst in theory a discussion about long Covid and, by extension, other post-viral conditions, might be helpful to the ME community, it is most unlikely that this would constitute a comprehensive examination of ME’s pre-existing and far more complex background.

My concern about this as a possible development is that, if ME is slotted into a convenient sub-plot of the long Covid narrative, this would diminish or invalidate a separate inquiry into its own long and tortuous history, the exact opposite of what is required.

It is to be hoped that the ME organisations in the UK are alive to this possibility and will deal with it appropriately if it arises.

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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Photo credit ~ Valerie Eliot Smith 2016