FOI requests reveal that NICE caved in response to threats from psychiatric lobby in “ME/CFS” debacle
Disclosure: I have lived with the discrete illness myalgic encephalomyelitis (ME, referred to here as “ME/CFS”) since 1981. I have written extensively about the NICE process, amongst other topics, in relation to this illness. I am a barrister. For more information see About.
I work independently and I am not affiliated to any organisation or group in the ME community.
NOTE: there is a full summary of events relating to the English National Institute for Health and Care Excellence (NICE)’s updated guideline for “ME/CFS” at the end of this post. Please scroll down to access it.
**************************************
Background to this post
In 2017, NICE took the decision to update the guideline for the illness it terms “ME/CFS”. After some delays, the draft was completed and submitted for comment in November 2020. The final version was circulated to specific stakeholders on 4 August 2021 with general publication due on 18 August.
In the afternoon of 17 August, NICE circulated an email informing stakeholders that publication was being paused. Shortly afterwards, it transpired that this pause was the result of external interference from a lobby group of representatives from some of the Royal Colleges and NHS England.
This powerful group disagreed with the new guideline and was threatening to refuse to cooperate with implementation of the new version, despite it having been finalised and signed off by NICE’s guidance executive. In giving effect to this pause in publication, NICE sacrificed its independence and allowed the subversion of its own prescribed process.
A series of unprecedented events followed, ending in publication of an amended version of the guideline on 29 October 2021, a delay of nearly three months. This delay caused considerable unwarranted consternation and distress to millions of members of the international ME patient community.
As a result of this bizarre series of events, members of the ME community submitted Freedom of Information (FOI) requests to NICE. Dom Salisbury is a scientist who lives with ME. On 6 December, he published a blog post detailing and analysing some of the responses to those requests.
On 7 December I composed a 10-tweet Twitter thread about that blog post:
Thread begins/
17 Aug 2021: in a highly controversial move @NICEComms paused the final publication of the new guideline for the illness “ME/CFS”
@domsalisbury has now collated the results of FOI requests showing the insidious lobbying behind NICE’s actions
It has become clear that this external interference was led by the psychiatric lobby. This vociferous lobby group has long controlled the narrative of “ME/CFS” causing unimaginable distress and damage to the patient community.At this point, NICE should have refused to engage with this powerful lobby group, stuck with its own prescribed process and published as planned on 18 August 2021. It didn’t. Instead, it capitulated, tore up its own manual and allowed this lobby group to manipulate the process.NICE surrendered to threats of non-cooperation from a dangerous lobby group. This invalidated the process & rendered it potentially unlawful. NICE sacrificed its independence as an executive non-departmental public body of the Dept of Health in England thereby losing public trustNICE should have remained firm and stuck to its own manual. It should have published the guideline as planned and addressed the problem of implementation afterwards (precedent exists for this course of action).The FOI requests confirm what I was arguing from the start of this debacle and their content is no surprise to me Legal opinion and legal advice: the “paused” NICE guideline for “ME/CFS” https://valerieeliotsmith.com/2021/09/01/legal-opinion-and-legal-advice-the-paused-nice-guideline-for-me-cfs/The ME orgs also capitulated, thereby validating NICE’s shameful actions & undermining any future investigation. This capitulation facilitated the grubby events which followed, including the “roundtable meeting”. By this point the psych lobby had retreated to plan their comeback.As a result of this lobbying, NICE finally published an amended version of the guideline on 29 October. During the intervening period, I wrote a series of posts condemning NICE’s actions
So why does this matter? This fiasco calls into question two matters of great importance:
1) How much influence the psychiatric lobby has had over the fate of the international ME patient community during the last 40 years
2) NICE’s trustworthiness & independence as a public body/End of thread. Thanks for reading.
***************************************
SUMMARY OF PREVIOUS EVENTS 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 2007 guideline for “ME/CFS”. After several delays, the new guideline was completed and signed off by NICE’s guidance executive. On 4 August 2021, it was distributed to NICE representatives and qualifying stakeholders. The document was to remain confidential until 12.01am on 18 August 2021.
On 17 August 2021, NICE “paused” publication of the document but gave no credible explanation or detail of any exceptional circumstances justifying its extraordinary action. In addition, the “pause” in publication meant that NICE claimed that this final version of the guideline, already distributed to numerous parties, remained confidential. (I have disputed the validity of this claim of confidentiality in an earlier post.) According to NICE’s own manual, the distribution and publication on 4 August completed the process. No further changes could be made from this point onwards, save for minor corrections.
It became clear that this eleventh-hour development was the result of external interference by representatives of the Royal Colleges and NHS England who were opposed to the new guideline. This is in direct contravention to NICE’s own prescribed procedure and such an action at this late stage should have been impossible.
Since then, NICE has issued two statements. The first, on 27 August gave details of a roundtable event, to be held in September chaired by an “independent” party. This was then updated to 18 October. Selected representatives from the ME community and other parties would be invited to attend subject to signing new non-disclosure agreements (NDA’s).
The purpose of this event was to “gain support for the guideline to ensure effective implementation”, despite the process having been completed, signed off and the document already distributed to an extensive number of people.
A second statement was issued on 21 September 2021 further attempting to justify this bizarre series of events. The statement also announced Professor Dame Carol Black as the “independent” chair, someone whose history has made her completely unacceptable to many in the ME patient community.
On 18 October the roundtable took place, [firstly with seemingly positive reports of broad agreement but then with what has transpired to be a deceptively positive outcome].
An amended version of the new guideline was then published on 29 October 2021.
*******************
“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019
*************************************************
valerieeliotsmith 
You’ve done brilliantly to capture all of this. I’m glad the FOI request was done and replied to, well done to all who’ve been a part of this. There was so much happiness at the confirmation that graded exercise would be removed, and then it all fell to shit. There’s so much underhandedness that goes on that we’re unaware of so I’m not surprised by anything any more. That said, I actually was surprised it was a psychiatric lobby behind it. I don’t trust NICE as far as I can throw it so I don’t think their independence or objectiveness can be relied upon. The problem is, we mere patients are the ones who suffer the fall out of the shadiness and incompetence.
Caz xx
LikeLike