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

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 popular 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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