rvallee
Senior Member (Voting Rights)
They make no mention that the whiners are the same people whose work has been rated as awful, which is completely unserious. This is extremely relevant, they have huge biases and conflicts of interest listed right below their commentary. And massively distort what happened. They make it seem as if all NICE did is look at some anecdotes and recommended a "treatment", which pacing isn't, based on nothing.Merged thread
ME/CFS: Researchers question credibility of NICE guidance
BMJ 2023; 382 doi: https://doi.org/10.1136/bmj.p1621 (Published 13 July 2023)
Cite this as: BMJ 2023;3821621
Elisabeth Mahase
Guidance from the National Institute for Health and Care Excellence (NICE) on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) “deviated from usual scientific standards” and could cause harm, a group of researchers have claimed.
More than 50 international specialists analysed NICE’s 2021 guidance and questioned the evidence underlying the decision to stop recommending graded exercise therapy (GET) and recommending only cognitive behavioural therapy (CBT) for symptom management and distress.1 “The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability,” they wrote in the Journal of Neurology, Neurosurgery and Psychiatry.
NICE has vehemently rejected the study’s conclusions, telling The BMJ that it stands by the recommendations outlined in the guidelines.
The institute produced its first CFS/ME guidance in 2007, which recommended two forms of rehabilitation—GET and CBT. It then reviewed the guidelines in 2021 and said that some people with ME/CFS reported “worsening of symptoms with GET and no benefit from CBT.” It said that, while research on pacing (energy management) was “sparse,” this method was “preferred by many people with ME/CFS.” As such, NICE recommended pacing instead, which involves patients managing their activities to stay within their energy limit.
The BMJ previously reported that four members of the NICE committee developing the recommendations had left the group just weeks before the final guideline was due to be published, prompting suggestions of disagreements over the content.2 The committee had 21 members, including five lay members rather than the usual two, plus another co-opted member representing the ME Association.
Different evidence prioritised
In their paper the researchers said that NICE had “prioritised evidence from qualitative studies and patient organised surveys” in its 2021 review and that it had included “remarkably little aggregation and meta-analysis, making it hard to conclude what treatments worked.” They added that the committee had “created a new definition of CFS/ME, which ‘downgraded’ the certainty of trial evidence.”
The researchers highlighted a number of meta-analyses published since 2007, which they argued showed that the evidence for GET and CBT had strengthened, not weakened, since the initial NICE guidance. They pointed to NICE guidance on other relevant conditions, including chronic unexplained pain, that still recommended GET and CBT. Their paper asked, “Since such pain is common in CFS/ME, how can a clinician choose which guideline to follow?”
On the pacing recommendation, the researchers added that the “only substantial trial” on this showed that it was “no more effective” than specialist medical care alone and “less effective than either CBT or GET.” As such, they warned that the guidance could result in patients missing out on helpful treatments.
Trudie Chalder, coauthor and professor of cognitive behavioural psychotherapy at the Institute of Psychiatry, Psychology & Neuroscience at King’s College, London, said, “In this analysis we have systematically assessed this NICE guideline for CFS and ME and found it to be inconsistent in its process of review and its consideration of evidence . . .We are concerned about the healthcare implications of the revised 2021 guideline: clinicians will not be able to offer GET.”
NICE rejects findings
In response, a spokesperson for NICE said, “We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients.
“In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.”
NICE has said that it will provide a “detailed response to this analysis” soon, but it was “confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”
Yellow journalism, basically propaganda. In academia. Absurd. Completely absurd lack of integrity. This system is broken beyond repair.
