Robert 1973
Senior Member (Voting Rights)
Yesterday, I forwarded my email to Danny Altmann and Alice Roberts. Below IN CAPS are Danny’s responses which I thought were helpful and mostly encouraging (shared with his permission):
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:
- 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.
YOU’RE PREACHING TO THE CONVERTED ON THIS ONE: OUR RESEARCH, MOVING INTO THERAPEUTIC APPROACHES, RESIDES ENTIRELY IN THE ASSUMPTION THAT IMMUNOPATHOLOGICAL PATHWAYS NEED TO BE DEFINED, SHOWING THE DIRECTION FOR SERIOUS THERPAEUTIC INTERVENTIONS. I’M NO SUPPORTER OF GET AND HAVE ALSO COMMENTED FREQUENTLY THAT SUFFERERS NEED THEIR OLD LIVES BACK, NOT HELP TO READJUST TO DISABILITY
(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.
OUTSIDE MY EXPERTISE, BUT SOUNDS SENSIBLE3. 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.
FOR MY PART, AS MENTIONED, I’M SOMEWHAT HOPEFUL THAT THE DUAL-MOMENTUM OF LC AND ME FINALLY HAS POTENTIAL TO CATALYSE A CHANGE IN THIS REGARD. SO, THE £19M+ ON THE TABLE FROM NIHR WILL INEVITABLY START TO FEED INTO ME CROSS-HYBRIDISATION
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.
I AGREE, AND FOR ALL THE REASONS DESCRIBED ABOVE, THINK THIS MAY BE EN ROUTE
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.
I THINK THIS BIAS HAS INDEED CAUSED HARM, BUT FOR MY TASTE, ONE OF THE MANY WAYS IN WHICH COVID HAS BEEN A GAME CHANGER IS IN RECALIBRATING PPI FOR THE BETTER
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.
THERE’S SO MUCH URGENT, USEFUL, HARD SCIENCE TO RESOLVE (WITH GREAT POTENTIAL OUTCOMES) THAT THERE’S LITTLE JUSTIFICATION TO PSEUDOSCIENCE APPROACHES
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.”
HOPE YOU AGREE THAT INDEPENDENT SAGE MEMBERS HAVE BEEN FRONT OF THE QUEUE FOR BEING PREPARED TO SPEAK OUT
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.
– I WONDERED AT THE TIME IF THERE MAY HAVE BEEN SOME CROSSED WIRES
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