United Kingdom: Independent SAGE

Since all the mistakes have been repeated from day 1 and continue to be with no end in sight... there was no good response to this. It can't be avoided, it's already the norm and getting worse with time until, if, there is a breakthrough.

So far pretty much the worst case scenario that I never imagined possible, it was too inept to consider. And yet here we are, the worst case scenario. Dogmatic ideology is soooo much fun.

At least there's more research than ever, but the pushback is even larger this time, along with the obsessive need to believe that the end is just around the corner if everyone just gets infected once more and gets it over with. I am a cynic by nature but this really blew all the thresholds I set for being too incompetent. Silly me, expecting basic competence and professionalism. I didn't even know there was a notch above 11 on the cynicism scale. It really does get that high.

 

Responses from Professor Stephen Reicher on Twitter:

KC: “Hearing @ReicherStephen link ME/CFS to mental illness was a body blow and compounds the misinformation and stigma endured by sufferers”

SR: “What I tried to do, Karen, was broaden the critique of linking ME to mental 'illness'. Because when people say 'it's only in their minds' they imply mental health doesn't matter and thereby demean two communities. If that wasn't clear, I apologise.”

KC: “Thanks. People with ME often suffer poor mental health as a result of losing their physical health, social life, financial security etc to a physiological condition with no effective treatment. It is often put down to mental illness so the ME community are sensitive on this issue”

SR: “I certainly understand the sensitivities and certainly did not want to trample on them. If I did, I regret it deeply. We must take all dimensions of ME seriously and all aspects of health (mental and physical) equally seriously.”

 

I would argue that, from that evidence, he in no way "understands the sensitivities", otherwise he wouldn't have spoken in the way that he did. What has clearly hampered any progress in understanding ME is an over-focus on inaccurate theories of the mental health dimension of ME, so if he understood the sensitivities then he would accept this fact and would have highlighted the need for a focus on the physical health dimension to reverse and maintain the balance that he desperately wants to see - he can't have it both ways.

 

I rarely enjoy reading what people have to say about the link between ME and mental illness/psychological factors, because it's usually so muddled and vague that it's difficult to actually tell what people are really trying to say.

 

Great to see this @Robert 1973 . Glad you're getting some responses/engagement - this should help to alert the Long Covid community that they are next in line to be scammed by the same "researchers" who carried out PACE and all of the other unblinded studies with subjective outcome criteria in ME/CFS.

I tried last year to get the APPGs on ME, & Covid, & groups lobbying for Long Covid, to raise the issue. Here's an extract from my email:
"The researchers, who carried out the Government funded "low and very low quality" studies in ME/CFS, are now being funded to carry out research into Long covid - using the same flawed methodology."

Didn't get much of a response and none from the Long Covid groups or Covid APPG - good to see you're being a lot more successful via social media etc.

 

I got the impression from the initial response to the question that ME is a bit of a 'dirty secret' that no one really wants to talk about.

 

Yes, I guess it had been aired by the group internally.

 

I'm curious what they really believe. They must be aware that it looks like 50% or more of long covid might well be the same as ME/CFS, or something very similar.

Perhaps their plan was to quickly prove some objective abnormalities and avoid association with ME/CFS alltogether. This has worked to some extent (see recent lung findings) but will they be able to obtain such proof for all long covid cases?

If not, what will they do? Some from outside the LC community will propose that these "medically unexplained" long covid cases must be psychological in origin (hypochondria, mass hysteria, the usual). Will the LC community fight back against this? If yes, why not fight back against this together with ME/CFS patients, who have been fighting against this for a long time?

 

If I had to guess, I'd say it's similar to the reason many with ME/CFS disparage and don't want to be associated with the chronic Lyme community. It's the whole True Science only validates me and mine gestalt.

 

My position is a lot of people claiming to have chronic Lyme have ME/CFS while it’s them who don’t want to be associated with ME/CFS.

 

I have been diagnosed with both. Over the past two decades I have been a member of many ME/CFS and Lyme forums. Although what you opine, @Dolphin, certainly has happened, it has been - at least in my experience - the exception rather than the rule. I can only speculate as to why.

BTW, I find it curious and somewhat unsurprising how you framed your opinion: "...a lot of people claiming to have chronic Lyme..." Claiming? Do you claim to have ME/CFS without any expert, or at least semi-competent, clinical diagnosis?

Edit to add: And you may be correct about many Lyme patients really having ME/CFS. The Science isn't truly in yet. Lots of propaganda, though.

 

Lyme disease is a disease in its own right. The only association with ME is because both are written off as MUPS or imaginary. The state of the microbiology tests into Lyme is awful and a clear example of what happens when some people are given too much authority without the expertise to back it. Probably an agenda there too.

There was a lot of confusion in the days before PEM was re acknowledged as the primary symptom of ME instead of just fatigue. It meant that people were told they had CFS when they had fatigue as part of their original illness. That was a false association with ME.

It is possible to develop ME after or alongside Lyme but then it is ME. It is just like my diabetes and psoriasis, a different compartment of life.

Longcovid sufferers appear to have PEM and many are obviously going on to get an ME like illness though the majority will improve eventually just as they do in other post viral situations.

The ME community is involved because it is important to spread the word that CBT and GET will make people worse. Also if the BPS get their hands on longcovid they will have more power just as we are getting them pushed to the background.

The main reason is because so many of the symptoms of longcovid are like ME that any test or treatment might help us too. A treatment for Lyme disease, like prolonged antibiotics, is not likely to have any effect on ME.

Nothing to do with validation or "me and mine". I hope they get the treatment they deserve.

 

Or on roughly 20% of Lyme patients, for that matter.

And some other issues that are not so ME/CFS like, e.g. lung issues. Oddly, many with chronic Lyme have lung issues, but this is primarily due to excess baggage associated with sister TBD's like babesia.

Do people with Lyme have PEM? I don't know. I don't think so. They DO have things like swollen knees and facial palsies, sometimes. So there appear to be distinguishing characteristics, just as there appear to be with LC.

I'd wager that if we hone in on the specific pathogens behind ME/CFS, I mean really parse down, you'd identify clinical subsets in terms of sequlae - just as you often will if you test extensively enough with cases of chronic Lyme really being bartonella or babesia or whatever.

A rose by any other name, is not necessarily a rose?

I suspect most of the primary causes of ME/CFS are, too, just as they appear to be for MS. Name your pathogen. I don't just test with unusually elevated titres for Lyme and other TBDs, I have those with EBV and Herpes Zoster and a laundry list of others, depending on the day of the week it seems. Which is behind my ME/CFS? But, eh, maybe it's all down to a broken immune system. We still do not know.

Well, no, that's not quite accurate. There was a concerted campaign back in the 90's to get chronic Lyme patients re-diagnosed as CFS patients. But I hear you.

Yes, agreed.

 

Recalled that I'd suggested that the groups representing those with Long Covid should join this site. Again, I didn't get a response but since you're coming to the attention of more people, it might be worth highlighting that they might find this site useful.

 

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):

https://www.youtube.com/watch?v=aSNNTYKz0pc

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?”

​

 

Solid! I hope they actually bother thinking and responding.

 

Can anyone tell me how to submit a question to Independent Sage? Thanks.

 

Excellent letter, thank you @Robert 1973

Very early days on this next part, but our MP has been involved and supportive of PwM.E. since the debates of 2018.
We have insisted that M.E. requires ringfenced funding* of biomedical research, commensurate with disease burden.

(*just like brain cancer research received)

https://twitter.com/user/status/1489198561497686017


​

 

I'm planning to ask a totally unrelated question re access to antivirals - in fact it may be unrelated to ME/CFS.

I'm not clear, but my impression is that it's possible to be excluded from access to ventilators, due to underlying health conditions, and excluded from access to antivirals. So my question relates to access to antivirals for those who are are excluded from access to ventilators.