Below is the email that I’ve sent to Indie SAGE. I’ve not had a reply yet but they are often slow to reply. At some stage I will probably share on Twitter but I want to give them a chance to reply first and I’m a bit wary of people piling in with criticisms when I feel that many of them are really trying to understand and help. I don’t imagine that everyone here will agree with all my suggestions, but I hope my efforts will help to raise awareness of the issues among members of Indie SAGE and get them thinking…
Dear Independent SAGE,
Thank you again for inviting me to the meeting on 28 January. I was sorry that I was not well enough to attend but I was grateful that you allowed Caroline Struthers to ask my question for me.
Having watched the meeting on YouTube, I was disappointed that nobody really answered my question about how we can ensure that the mistakes that have been made with ME/CFS are not repeated with Long Covid. I have therefore drafted my own suggestions below, which I would be grateful if you could share with those who attended Friday’s meeting and other members of Independent SAGE:
1. The overlap between ME/CFS and Long Covid (LC) needs to be acknowledged. ME/CFS may be heterogeneous, but if someone meets the diagnostic criteria for ME/CFS they have ME/CFS, by definition, whether it was caused or triggered by Covid-19 or anything else.
2. All studies of non-pharmacological therapies for ME/CFS have been graded as low or (mostly) “very low quality” by
NICE (see
Rapid Response to the BMJ). The problems with this research must be acknowledged by all those involved with LC research and service provision. This should include acceptance of NICE’s recommendation that graded exercise therapy (GET) and CBT should not be prescribed as treatments for ME/CFS due to the evidence that they don’t work and can be harmful.
(For more detail on methodological issues with trials of GET/CBT see Prof Jonathan Edwards’s
expert testimony to NICE. For more details of evidence of harms from GET/CBT see my
Rapid Response to the BMJ.)
3. At some point there needs to be an independent inquiry into the failures of ME/CFS research and service provision. I would also favour some sort of truth and reconciliation commission.
4. We need ring-fenced funding for high-quality ME/CFS and LC research, as has been granted to Alzheimer’s, brain cancer and MND in the UK. This funding should be proportional to the disease burden and compensate for decades of underinvestment in ME/CFS research. But it must not be used to fund more low quality research.
5. Prof Danny Altmann suggested that underfunding of research is common to many illnesses, and that it is partly due to randomness. However, it is well documented that ME research has consistently received far less funding than other illnesses of similar disease burden for at least 30 years, and that most of the funding has gone to very low quality psychological and behavioural research. That is not random. It is due to institutional and individual failures, including bias and political interference. This needs to be acknowledged by those responsible and by those with the authority to effect change.
6. Many more people with the requisite knowledge, skills and expertise need to be persuaded to get involved with trying to understand and solve the problems of LC and ME/CFS. After decades of failure, it is incumbent upon governments and medical research funding bodies to ensure that this happens – perhaps by setting up a commission.
7. I agree with Prof Alice Roberts and other members of the panel that patient and public involvement in research is vital (as is happening to great effect with
DecodeME). However, ME/CFS has often been cited as an exception to this rule by some of those involved with LC (see, for example:
BMJ blog on patient-led research, and
BMJ paper which claimed “understanding of the post-viral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it”). Again, these mistakes need to be acknowledged, along with the harm they have caused.
8. Whilst I strongly agree with Prof Altmann that we need to understand the pathophysiologies of LC and ME/CFS, I hope that he and others would agree that it should not be necessary to understand pathophysiology in order to prevent patients from being harmed by pseudoscience. Unevidenced psychogenic theories must not be allowed to continue to occupy the gaps in medical knowledge until real scientific understanding forces them to move on to new diseases.
9. Patient welfare must be prioritised over careers, professional reputations and vested interests. Doctors and scientists who understand the mistakes that have been made must have the courage to speak out. As John Stuart Mill once wrote: “Let not any one pacify his conscience by the delusion that he can do no harm if he takes no part, and forms no opinion.”
In addition to my suggestions above, I would like to express my disappointment that Prof Stephen Reicher chose to respond to my question with a familiar strawman argument. As Caroline pointed out, my question did not imply that mental illness is not real, or that it should be treated any less seriously than other types of illness. Such views are anathema to me, and irrelevant to the issues I raised. However, this type of misrepresentation has frequently been used to deflect valid criticisms of psychosocial ME/CFS research, and it is ironic, and perhaps telling, that this mistake was repeated in response to my question.
It should also be noted that one of the things that
independent analysis of the PACE trial and other psychosocial ME/CFS research has revealed is that accepted standards in this field fall far below the basic requirements for minimising bias and protecting patients from harm. As well as inhibiting progress in the development of diagnostic tests and effective treatments (by promoting the false belief that ME/CFS can be treated or cured with CBT and/or GET) this very low quality research has prevented people with ME/CFS from accessing appropriate psychological and practical support to help them cope with their illnesses and disabilities.
Furthermore, it would be surprising if the acceptance of such low standards in psychosocial research, and particularly with studies of therapist-delivered interventions, has not resulted in the mistreatment of people with other illnesses, including those classified as psychiatric or psychological.
Members of Independent SAGE have never appeared to hold back from challenging the views of scientists with which they disagree. Indeed, that is one of the reasons for the organisation's existence. That most of the scientists on the panel appeared to be either unaware of, or unwilling to acknowledge, most of the issues I have raised above does not give me confidence that the lessons from ME/CFS have been learnt, or that the mistakes will not continue to be repeated with LC.
However, I very much hope that LC and ME/CFS will be a subject to which Independent SAGE returns, and that experts in the issues I have raised, such as Prof Jonathan Edwards, Prof Brian Hughes, Prof Chris Ponting, Dr David Tuller and Dr Carolyn Wilshire, may be invited to contribute.
In the meantime, I would be pleased to receive feedback from members of Independent SAGE by email or at a future meeting. Remembering the words of John Stuart Mill I quote above, I am particularly interested to know whether or not members agree with my suggestions.
Thank you once again for inviting me to participate in this important discussion, and for all your good work during the pandemic.
Robert Saunders
Link to my question at Independent SAGE meeting on 28 January (50m 25s):
Copy of my question read by Caroline Struthers:
“I have been diagnosed with severe ME for nearly 30 years, and I am concerned that many of the mistakes that have been made with ME/CFS are being repeated with Long Covid (which in some cases may meet the diagnostic criteria for ME/CFS).
The new NICE guideline for ME/CFS specifically recommends against the prescription of graded exercise therapy and CBT as treatments because of the evidence that they don’t work and can be harmful. However, many of those responsible for the promotion and prescription of these therapies for ME/CFS appear to be influencing research and service provision for Long Covid.
For all the years that I have been unwell, understanding of ME/CFS has been inhibited by underinvestment in high quality biomedical research and over-investment in low quality psychosocial research. This has resulted in no diagnostic tests, no effective treatments and the widespread promotion and prescription of ineffective and harmful behavioural and psychological therapies. Given the overlap, how can we ensure that the mistakes that have been made with ME/CFS are not repeated with Long Covid?”
