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Robert 1973

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Independent SAGE is discussing Long Covid on Friday. I’ve emailed to suggest they invite some people like Jonathan who are knowledgeable about the problems with ME/CFS research and service provision. I’ve also sent a little background info and asked how we can ensure that problems with ME/CFS research and services are not repeated with LC.
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Robert 1973 said:
Independent SAGE is discussing Long Covid on Friday. I’ve emailed to suggest they invite some people like Jonathan who are knowledgeable about the problems with ME/CFS research and service provision. I’ve also sent a little background info and asked how we can ensure that problems with ME/CFS research and services are not repeated with LC.
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Independent SAGE have just replied, inviting me to ask this question to directly to the scientists during the live briefing on Friday at 1.30. Unfortunately, I doubt I will be well enough but I will ask if someone else can read it out on my behalf if I’m unable to do it myself – although, I’d prefer to ask it live if I am able to so that I can follow it up, depending on what the panel say.
 
Don't know if anyone has picked this up - Independent Sage briefing today is doing a feature on Long Covid - begins 37 minutes from the start
- Lesley MacNiven [Chair of the Long Covid support Group] is one of the contributors (37 minutes).
 
Robert 1973 said:
Independent SAGE have just replied, inviting me to ask this question to directly to the scientists during the live briefing on Friday at 1.30. Unfortunately, I doubt I will be well enough but I will ask if someone else can read it out on my behalf if I’m unable to do it myself – although, I’d prefer to ask it live if I am able to so that I can follow it up, depending on what the panel say.
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I asked if I could be given a specific time to ask my question to so I could rest in advance and maximise the probability of me being able to attend. I logged in at about 2.10, in order to ask my question at 2.30. 4 members of the public were invited to asked their question but I was ignored. Just after 2.30 I asked in the chat if I was going to be invited, but nobody replied. When the meeting ended at about 2.35, I unmuted my microphone and asked if anyone could hear me. Most people left but about 5 people stayed and listened to what I had to say. They all nodded and assured me that they were on my side and understood the issues but I wasn’t necessarily convinced – not least because (as far as I’m aware) ME/CFS wasn’t mentioned in the whole meeting. However, they did at least all seem to be sympathetic.

FWIW this was my preprepared question – although, I didn’t read it out word for word, and I made various other points in response to things that were said by others.

“Thank you for inviting me to join this conversation. I’ve logged in late to save my energy so I apologise if I am repeating anything.

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 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?”
 
Robert 1973 said:
Most people left but about 5 people stayed and listened to what I had to say. They all nodded and assured me that they were on my side and understood the issues but I wasn’t necessarily convinced – not least because (as far as I’m aware) ME/CFS wasn’t mentioned in the whole meeting. However, they did at least all seem to be sympathetic.
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Thanks for your efforts Robert. Every little helps. At least you were heard by those few people.
 
FMMM1 said:
Independent Sage briefing today is doing a feature on Long Covid
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I have just watched the whole Independent Sage video. It was very good, starting with the latest stats broken down in all sorts of graphs, then focus on long covid.

The focus was mainly on the situation relating to economics, employment and education - benefits, loss of work force and economic effects, recognition as a disability, whether it is being properly recorded by government, whether it can be registered by some as an occupational disease, high rates in children etc. There was a bit at the end about funding for treatment research, but it was explicitly not a program about symptoms or treatments, so I'm not so surprised Robert's question wasn't included in the limited time.

The UK stats on Long covid are currently 1.3 million cases, half a million of them over a year, and over 100,000 children. There was a good bit at the end arguing against the UK government's removal of measures like masks.
 
Robert 1973 said:
I asked if I could be given a specific time to ask my question to so I could rest in advance and maximise the probability of me being able to attend. I logged in at about 2.10, in order to ask my question at 2.30. 4 members of the public were invited to asked their question but I was ignored. Just after 2.30 I asked in the chat if I was going to be invited, but nobody replied. When the meeting ended at about 2.35, I unmuted my microphone and asked if anyone could hear me. Most people left but about 5 people stayed and listened to what I had to say. They all nodded and assured me that they were on my side and understood the issues but I wasn’t necessarily convinced – not least because (as far as I’m aware) ME/CFS wasn’t mentioned in the whole meeting. However, they did at least all seem to be sympathetic.

FWIW this was my preprepared question – although, I didn’t read it out word for word, and I made various other points in response to things that were said by others.

“Thank you for inviting me to join this conversation. I’ve logged in late to save my energy so I apologise if I am repeating anything.

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 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?”
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@Robert 1973 Your question was asked today. At about 51 minutes:



ETA: correct time
 
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strategist said:
@Jonathan Edwards what do you think about speaking at one of these indie SAGE meetings? The long covid community can surely benefit from knowledge of the ME/CFS community.
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I am uncertain about how to interact verbally on these issues - partly because I am quite deaf these days.

It as good that Robert's question was taken seriously and had several responses. Sadly, they drifted towards tub-thumping for educating the public about science and for mental health - with the subtext that ME is mental health and all the garbage about saying it is real. Unfortunately, when so many people miss the point that tends to be what happens.

It reminded me a bit of the round table. Get a lot of experts together to debate and they will take the opportunity to sell their product.
 
Kalliope said:
@Robert 1973 Your question was asked today. At about 51 minutes:



ETA: correct time
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I don't suppose we should be surprised that the Professor of Psychology should feel the need to weigh in on Robert's question about how to avoid the mistakes made with ME/CFS research with the opinion on how important it is that psychological health be seen as being as important as physical health, and that divisions between the two things shouldn't exist. I also felt that the other answers were sadly lacking.

ETA: Cross posted with Jo above.
 
I thought the responses were very disappointing. I don't think most of them understood the question. They just used it as a hook to hang their personal hobby horses on. The only useful point was the one about involving patients in design of research. It was a great pity the social psychologist used it as an excuse to talk rubbish irrelevant to ME. Our problem is too much involvement of psychs, not too little.

I think this highlights the problem of these sorts of sessions where the people answering the questions from the public are not specialists in what they are being asked about, and don't have time to get to grips with the question being asked, so feel they just have to try to say something.
 
Andy said:
I don't suppose we should be surprised that the Professor of Psychology should feel the need to weigh in on Robert's question about how to avoid the mistakes made with ME/CFS research with the opinion on how important it is that psychological health be seen as being as important as physical health, and that divisions between the two things shouldn't exist. I also felt that the other answers were sadly lacking.
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I find the professors' point so frustrating because his argument is no longer relevant. It may have been true 30+ years ago, but it is no longer true. Mental health conditions have more credibility, attention and resources than conditions like ME/CFS.

Whenever that point is brought up, it seems more like a deliberate deflection from the criticism, rather than a point made in good conscience.
 
Snow Leopard said:
I find the professors' point so frustrating because his argument is no longer relevant.
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It was never relevant. What is even more frustrating is trying to think up a reply that squashes his comments without fanning the flames. There isn't one but I can fantasise:

As was said, Robert's question was not about mental versus physical. It as about the fact that psychological intervention has been shown to be completely useless for ME and so may well be for LongCovid, yet psychologists and their wives are still under the illusion that they are 'useful' in this sort of context.

The learned professor has demonstrated how relevant the questioner's fears are.
 
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Jonathan Edwards said:
It as good that Robert's question was taken seriously and had several responses. Sadly, they drifted towards tub-thumping for educating the public about science and for mental health - with the subtext that ME is mental health and all the garbage about saying it is real. Unfortunately, when so many people miss the point that tends to be what happens.
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Andy said:
I don't suppose we should be surprised that the Professor of Psychology should feel the need to weigh in on Robert's question about how to avoid the mistakes made with ME/CFS research with the opinion on how important it is that psychological health be seen as being as important as physical health, and that divisions between the two things shouldn't exist. I also felt that the other answers were sadly lacking.
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Yes, Stephen Reicher’s familiar strawman argument was straight out of the SW handbook. A classic, which strongly suggests that the lessons have not been learnt and the mistakes will be repeated. I wish I’d been feeling well enough to attend and challenge him, but I was grateful to @Caroline Struthers for agreeing to stand in for me and for politely pointing out to Reicher that he was wrong to make those inferences from my question.

Trish said:
I thought the responses were very disappointing. I don't think most of them understood the question. They just used it as a hook to hang their personal hobby horses on. The only useful point was the one about involving patients in design of research. It was a great pity the social psychologist used it as an excuse to talk rubbish irrelevant to ME. Our problem is too much involvement of psychs, not too little.
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Agree, I’m in the process of writing a detailed response to Independent SAGE which I hope will be constructive. I will share on here if I manage to finish it.

When they emailed me last week to invite me to the meeting I suggested they invited Jo, Brian, David and others but they obviously decided against – at least for now.
 
Thanks for your efforts, Robert, and thanks to Caroline for asking the question. At least it has now been raised, so when people with Long Covid realise they are being gaslighted by the same people who do it to pwME, Independent Sage can't say they weren't warned.
 
What kind of response would you all consider to be not repeating the same mistakes?

I think for me it would be a professor of psychology saying "I understand that there is a problem with psychological research into poorly understood conditions being of unacceptably poor quality. This has caused more distress to patients and real harm. There is no good reason to believe that poorly understood means psychological cause of symptoms and we must challenge this dogma. We can learn from these studies how not to conduct research. [A more detailed explanation of what to do and not do would follow]

Actually, not one professor but generally a broad recognition of this among professionals that are involved in LC research. Then we can be fairly sure that mistakes won't be repeated.

A comment like "psychological health is as important as physical health" suggests no understanding and an intent to continue doing things as they have always been done. But if you do the same things as always, you'll also get the same result.
 
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