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‘Lacking in transparency, ethics, and compassion’: NICE pauses publication of ME guidelines

When NICE paused publication of the new ME guidelines this week it rocked the community that lived with the condition. Danielle Watts discusses why the harmful treatments some professionals are opposed to cutting out can’t be allowed to continue.

When Daniel Moore was a child he developed myalgic encephalomyelitis (ME). At the time ME was often described as ‘yuppie flu’, thought mainly to affect the middle-classes and to be a symptom of laziness rather than any serious illness.

As the son of a farmer growing up in rural Northumberland this label could not be a less accurate description of Daniel.

When I asked what treatment was offered to Daniel he recounted how he saw a child psychiatrist, but his health deteriorated to a point when he needed in-patient care. Once admitted, Daniel was made to use an exercise bike and lift medicine balls.

His parents, seeing Daniel’s extreme distress at the treatment, discharged Daniel, but the family often feared that doctors would involve social services and that Daniel would be readmitted against his will. Daniel described the whole experience as a ‘trauma’ and explained to me how the disbelief and harm he suffered continues to impact him today. 

Daniel’s treatment took place in the 1990s, but three decades later it seems like little has changed. In 2007, the National Institute for Health and Care Excellence (NICE) published guidelines on ME, stating that Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) should be offered.

This guideline has remained in place despite the fact that the 2011 PACE trial, one of the most significant trials evaluating the effectiveness of GET, has been extensively criticised by the scientific and patient community.

In particular, critics have exposed flaws in PACE’s methodology and expressed concerns over conflicts of interest the Principal Investigators had, which included working as consultants for insurance companies and the Department for Work and Pensions. 

Furthermore, within a few minutes of researching online the experiences of people who had undertaken GET I was met with a plethora of people describing how GET worsened their symptoms and caused them extreme harm. Jessica Taylor-Bearman, an author with M.E, told me:

‘Graded Exercise Therapy nearly killed me. When I was bed-bound and flat in hospital, the physio started to force the angle of the bed up. It increased every five days by a certain percentage – whether I was well enough or not.” she said

“I remember sobbing as she kept upping the angle the bed went up to as pain flooded my body, the room started to spin and blood pooled to my feet. I kept saying no, shaking my head… She saw me, looked at me and she ignored me. It was a big part of the reason I ended up hospitalised for four years and severely suffering for a decade. I lost my childhood to GET’. 

Thus, in 2017 when NICE announced a review of the guidelines, this provided many within the ME community with a glimmer of hope that current and future patients would not be subject to the disbelief, harm, and suffering that so many patients have experienced.

Like many other people with M.E, when the draft NICE guidelines came out in November 2020 I was overjoyed; the draft guidelines highlighted how GET should not be offered as a treatment and seemed to take into account the lived experiences of 1000s of patients. 

Nonetheless, a day before the guidelines were due to be published, NICE announced they were pausing the publication of the new guidelines. This was a devastating blow to the ME community, as it meant the much-needed change to ME treatment would be delayed once again. 

Perhaps just as concerning as the pause in guidelines, is NICE’s complete lack of transparency around why the guidelines have been paused.

Little clarity can be gained from reading NICE’s statement on the delay of the guidelines as to why the guidelines have been paused, with the NICE website vaguely explaining how as a result of “issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps.”

The NICE website does not however explain what issues were raised and, perhaps more importantly, who raised them. 

Who has raised these concerns around the guideline is particularly significant given NICE’s own procedural practice. When I further researched NICE’s own process and methods I discovered that their website states if a registered stakeholder does receive an advance copy of the guidelines “it is not an opportunity to comment further on the guideline.”

Thus, NICE’s last-minute concern that there will not be support for the new guidelines makes little sense given their own procedural rules, and the fact that NICE should be making evidence-based decisions, not, as #MEAction UK described, “capitulating to vested interests.” 

This is not the first time lack of transparency has negatively impacted the ME community. The 2011 PACE trial data was not publically available until 2016, when The Information Rights Tribunal Judgement upheld the Information Commissioners decision and ordered Queen Mary University of London (QMUL) to release the trial data results.

Later a Freedom of Information Request revealed that QMUL spent over £240 000 in legal fees defending their refusal to release the data. 

The impact the pause of the guidelines has had on the patient community is also clear. Jessica said that finding out about the pause to the guidelines was ‘gut-wrenching’ and stated “I’m angry, I’m sad and I’m terrified.”

NICE’s complete disregard for the welfare of people with ME who have been waiting years to see a change in the guidelines is astounding. To leave such an important decision so last minute has taken a massive emotional toll on the ME community who already have been through so much suffering. 

The decision of NICE to pause the publication of the new guidelines for ME is lacking in transparency, ethics, and compassion.

NICE must do the right thing by patients and publish the new guidelines, or they risk their professional reputation and, more importantly, put the lives and welfare of people with ME at risk. 

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