United Kingdom: Independent SAGE

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:

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.

I COULDN’T AGREE MORE AND IVE CERTIANLY TRIED TO FLAG THIS UP IN MANY LC PRESENTATIONS I’VE DONE

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.
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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.
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OUTSIDE MY EXPERTISE, BUT SOUNDS SENSIBLE

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.
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I COULDN’T AGREE MORE WITH THE NEED, BUT DON’T REALLY AGREE THAT OTHER POTS ARE ‘RING-FENCED’. HAVING SPENT MANY DECADES ON GRANT FUNDING PANELS AND A PERIOD IN STRATEGY AT WELLCOME TRUST, FUNDING IN UK IS WAY BELOW WHAT’S REQUIRED, SO OUTSTANDING RESEARCH PROGRAMMES IN RIVAL AREAS OF DESPERATE NEED DO BATTLE FOR SCARCE RESOURCES AND, TOO OFTEN, THE OUTCOME HAS AN ELEMENT OF FASHION AND/OR SERENDIPITY

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.
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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.
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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.
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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.
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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.”
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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

…

 

My initial thoughts on Danny’s replies (not yet communicated to him by email)

I think we need both. Getting my life back is the dream but until that is possible we need help coping with and managing our illnesses and disabilities.

The diseases I mentioned are those for which the UK Government has specifically announced minimum funds that will be allocated for research.

[Edit to add links:

Alzheimer’s: https://www.theguardian.com/society...research-doubled-david-cameron-alzheimers-nhs

Brain cancer: https://www.gov.uk/government/news/brain-cancer-research-to-receive-45-million-funding

MND: https://www.gov.uk/government/news/...million-in-neurodegenerative-disease-research]

In a quick response to Danny I pointed out that the BMJ Blog I cited was written by Trisha Greenhalgh who was a guest at today’s meeting. “I wonder if this is an issue that could be raised with her. I wouldn’t want the smears about ME/CFS patients to be repeated, but I would welcome an acknowledgment that she got it wrong on that occasion – and that PPI has significantly improved the new NICE guideline for ME/CFS, and is having a positive impact impact on ME/CFS research such as DecodeME.”

My argument is that there is never any justification for pseudoscience.

I’m pleased that Danny has replied but I hope he and other members will raise these issues during live meetings and in the media.

I think that’s a generous interpretation but I would be delighted for Prof Reicher to prove me wrong. (I didn’t forward the email to him directly.)

Edit: typos

 

One thing I picked up on from your conversation was that funding is generally inadequate. I think it would be overly optimistic to expect this to change soon.

Recently there was a news item shared here somewhere that Mark Bonnar (bless him) donated some funds to ME (AfME I think). But real research requires often huge amounts (I don't consider them huge but only by way of relative to what is presently given). Huge budgets are building rockets and satellites, that's huge. But there is a lack of will in medical research as we know especially when an illness is as misunderstood as ME and others.

I expect this is for a number of reasons: the benefit seems remote (healthy people don't benefit) and not directly related to business interests or national security.

Anyway, I have come to think that if we can get organised as a larger group and include ME action Action for ME and find more well people with influence we could work to create a message that is focussed and on point with regards to our needs and that would hopefully put us in a public space where philanthropists with deep pockets can see us.

I'm sorry if this hi-jacks the thread a bit I really don't know where else to put this: I have been lately thinking that we at S4ME (meaning those with science abilities here)have been quite successful in accomplishing what we set out to do. I'm not suggesting we stop taking new research papers apart here but it's been acknowledged by many that each new paper is just a version of hundreds that went before -- with pretty much the same flaws.

And we have David Tuller's blogs and now Brian Hughes book which clearly show anyone who reads why the BPS position is not science. People are taking note. And then there's covid.

I think there are other ways to move forward now and I think it's worth a discussion what that might be and how we might proceed.

Just some thoughts I've been having . . .

 

“This Friday, Independent SAGE will discuss Long Covid in children. What would you like to know? DM us or send your questions to: questions@independentsage.org”

 

Still struggle with pacing and time spent on the forum but wanted to leave here big thanks to @Robert 1973 and @Caroline Struthers .

@Robert -- your question to Independent SAGE is so so good, as is your answer to Danny Altman. I hope there will be some more interaction also with the psychologist Prof Reicher. Did you now forward your answer to him?

Also thank you so much @Caroline for reading the question and for your clear and succinct rejection of Prof Reicher's comment.

I agree with others that Reicher's reaction is very telling. At the same time, maybe there is a small chance that he will self-reflect?

Hope your hugely worthwhile involvement won't have a too huge negative impact on your health, Robert.

 

Thank you @Robert 1973 for engaging with Independent Sage in this way and for responding so clearly to its response, and to @Caroline Struthers for her quick challenge to Prof Reicher's comment.

When your question was being read, I thought I saw engagement in the body language of several members who did not offer to answer your question. For example bottom row second left, female- Dr Zubaida Haque clapped her hands after your question was read out.

I think the process of asking the question helps bring the issue to the fore: thank you again for doing it.

 

Thanks. I sent the email to the Independent SAGE address and forwarded it to Danny Altmann (who chaired the LC meeting) and Alice Roberts (who chaired the following meeting at which Caroline asked my question) but I decided not to forward it to Prof Reicher – partly because I’m not feeling well enough to get into a long discussion with him, and as also because I didn’t want to risk being accused of harassment. But I hope it was forwarded to him by IS as I requested, and that he may have taken the time to reflect on his answer and look again at the issues I raised.

 

I've been very unimpressed by what this Independent SAGE have produced. Generally hostile to anything that doesn't explicitly limit LC to being an entirely new phenomenon, very little ability to learn from new information. Figures, Greenhalgh is on it.

But they've just added new members that know their stuff, which may make it actually relevant, and actually independent of institutional dogma. Maybe.

https://twitter.com/user/status/1512445959292309516

 

I wasn't aware that Greenhalgh had anything to do with Independent SAGE? From the outset they were far more sensible than SAGE and their advice would have prevented the whole pandemic at least in Western countries. They may not be that good on LC but I had not heard of any comment on that.

 

It's a bit hard to interpret the way it's written, but it's possible that she's newly joining it:

https://twitter.com/user/status/1512427157070434309


I took the first interpretation when I read it, but I'm not sure which it is.

 

I have watched some of their discussions and Greenhalgh has been featured including speaking about Long Covid. Perhaps this was last year? I got the impression she was a regular. I found it frustrating.

 

"On this week's briefing, we are going to have a session on Long Covid. DM us your questions or email it to us on questions@independentsage.org We will see you on Friday at 1:30pm."

https://twitter.com/user/status/1516713046424567811

 

Reports from today's meeting on Long Covid:

https://twitter.com/user/status/1517518613913161728


https://twitter.com/user/status/1517503545964175361


https://twitter.com/user/status/1517504072651313152


https://twitter.com/user/status/1517505261568679944

 

Hmm, apparently they have Fiona Fox as part of the panel today, discussing "science and policy".

 

https://twitter.com/user/status/1522646515403137026

 

Highlights of Fiona Fox director of the Science Media Centre at todays Inde Sage talking about lessons from the pandemic. Scientists should share evidence "not opinion or ideology", "not put themselves into camps or take a position" & the importance of humility.

So who is she sniping at? Indie Sage itself?

For sure you shouldn't take a position when your government is being sufficiently incompetent to bring about 150,000 unnecessary deaths and rising.

She seems to miss the point that the only use of evidence in science is to form an opinion on what is going on. To 'test a hypothesis'.

 

She wasn't sniping at inde sage it was a more general comment on lessons learned from the pandemic from an SMC perspective.

 

Like having a government supported by organisations like SMC for scientific opinion is likely to kill tens of thousands of people?

I haven't listened but I don't get this. The message is not wot she said at all. It is that scientific opinion-forming has completely lost the plot because everything has been infiltrated by politicos like her - and all the so-called scientists who sit on committees. I could mention a chief officer chappie who used to be in my department at UC but I won't.

The world needs honesty these days, not self-serving blather.

Coming out with stuff like this at an Indie Sage meeting IS sniping at Indie Sage, or at least it would be if the person involved actually understood what was going on.

 

A funny thing about this is that "scientists shouldn't share opinions" is an opinion. It's a valid opinion, one that is entirely dependent on execution, context and accuracy, but it is just an opinion. One that can take form in ideology, as a set of opinions.

The idea that facts and evidence exist on their own is generally as laughable as the idea that feral diseases exist out there, wild Parkinson's and airborne hepatitis looking for a juicy liver. If only it were that simple. As if the idea that sick people should get adequate medical care is not an opinion, a decision acted out consciously and entirely dependent on many acts of judgment and opinion, such as what even is illness, what is disease? None of those issues have been resolved yet, if ever.

From what I've seen, of people like her, Wessely, Sharpe and the rest, physicians generally make lousy philosophers. Comes out as typical glass-housers throwing stones all-around.

 

https://twitter.com/user/status/1522644206384300033


Long COVID figures in thread.