A potential S4ME project: What are the basic science facts that ME advocates need to know and understand?

Jonathan Edwards said:
@MSEsperanza reminded me that a year or so ago I wrote a response to some questions about ME.
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Thank you for your excellent understanding and presentation of the whole situation surrounding ME. It gives me hope that there is finally the possibility that we can proceed on the right track if others will begin to understand this as well. I am grateful.
 
Thank you for sharing your thoughts. The thing I feel most strongly about, as a patient, is how unethical it is that current treatments (CBT, GET and even the form of pacing taught in NHS ME clinics) are based on educating us about a model of disease that has no scientific basis.

As a patient this is the most frustrating thing because I go to the clinic and they try to teach me this stuff which is so obviously incorrect, that it is beyond patronising and entirely useless.

I sit there thinking 'seriously, do you really think I am so simple-minded!?'. They seem to genuinely believe that I will recover if I just mediate more, which is so frustrating because meditation hasn't helped one bit.

I am really worried about the potential for continuation of this unscientific biopsychosocial model in the next set of NICE guidelines, because it is more harmful having an incorrect and misleading explanation for the disease and to be basing 'interventions' on that, than having no clear explanation and just treating symptoms with conventional medicine.

I know you are not allowed to discuss what goes on in the NICE guideline develop committee meetings, but I really hope this point is being made loud and clear because it will be devastating for us if the biopsychosocial model is allowed to continue.

I have personally gained most benefit from treating symptoms and orthostatic intolerance with standard pharmacological medications.

The ME clinics have not benefited me in any way because their model of disease is incorrect and they are run by people who aren't qualified to prescribe, or to help with basic common ME issues like hypotension, POTS, gastrointestinal issues, pain medication, nutritional deficiencies, mobility problems,etc.

GPs are better placed to help with these things in the absence of specialist consultants, but you have to see 10 GPs before you find one who isn't blinded by the inaccurate assumptions of the biopsychosocial model, as these GPs tend to assume you just have health anxiety and need some CBT, so they overlook all the things they could be doing to help with symptoms which are actually quite simple.
 
Graham said:
Remember that Natalie Boulton (Voices from the Shadows) is producing a series of videos. Unfortunately circumstances have meant that her "first" two videos aren't really meant to be the first two. She is intending to produce a series of short videos that cover much of what we are discussing here.
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Not really. I am really stuck with the research side of things and putting it off for now. I recognise bits of Jonathan's paper as similar to something he spoke for a video session about 17 months ago. I've used little bits from it in the GET video. His reservations about the research made me stop and think and I haven't got any further. I did interview a lady from the Royal Free epidemic, but that was less revealing than I'd expected and she had very little memory of what had happened to others. Except for the importance of total rest in the early stages of illness, it didn't bear much relation to accounts I've heard from patients these days. I can interview researchers and doctors, but producing something with accuracy and authority is a different matter and overall I am at least as much interested in patients experiences. The PEM one should be ready soon.
 
There have been many excellent suggestions for topics to be covered. Before deciding what is to be included, though, I think there needs to be clarity on the audience(s) for this material.

I can see that it might be a writing we share with our doctors, or a text we give to a neighbor or put up on Facebook. These are very different audiences and the audience will, by and large, determine what subjects are covered and in what level of language.

Some years ago, I learned that US newspapers write to a 5th grade* level; that level would, I hope, not be appropriate for doctors.;)

This is a worthy project. It would give people with ME some real facts to cling to. At the moment, I think our advocacy efforts are damaged by both advocates and pwME claiming a laundry list of possible causes and potential cures for which little to no science exists.

Thanks to @Andy for suggesting this undertaking, to @Jonathan Edwards for providing excellent grist for the mill, and especially @MSEsperanza for formatting and posting Jo's words in an ME friendly way.


*Sorry, I don't know the equivalent in other countries' educational systems.
 
I posted about this a while ago on a members only thread. The recent Twitter activity around 'Long Covid' (see e.g. here ) prompted me to come back to this issue.

Regarding ME advocacy I'm still concerned that people with the best intentions for pwME apply some lines of thinking that could harm our case.

People involved in ME advocacy as well as a few independent scientists and journalists have done a great job in rigorously assessing and consequently rebutting the cognitive-behavioral model of ME. Even if some proponents aren't ready to follow, the rebuttal of this model is backed by sound science.

On the other hand, the claims made in reference to biomedical research I think are often not justified.

If until now, biomedical research couldn't rightly claim evidence of consistent pathological findings specific for ME or consistent abnormal findings with a plausible causal relation to the pattern of symptoms characteristic for ME, I think ME researchers and advocates should be aware that arguing otherwise could undermine their credibility and the credibility of biomedical ME research per se.

Harshly criticizing some of our otherwise mostly helpful and appreciated advocates, however, could be harmful too.

The dilemma:
So far many (perhaps the majority?) of those clinicians and researchers that take the life altering consequences of ME seriously and advocate for supportive care instead of patronizing and harmful treatment regimes are people engaged with ore refering to ME research that often includes unproven and non-evidenced claims about biomedical findings or alleged frequent comorbidities and the efficacy of some drugs or supplements.

But pwME need doctors for the most basic supportive care (issue sick leaves when necessary, check new symptoms/ refer to specialists, help with getting adaptions at the workplace for those that are able to work, wheel chairs etc., assessment of disability/ incapacity for work, palliative care for the severely ill...).

In my case and many others I know of, I received some kind of this care, but care beyond referrals or support beyond sick leaves often was denied by health insurance and other bureaucratic agencies because the argumentation given by the most supportive doctors was not credible and easily refutable (of course support of this kind also is often denied on utterly unsound reasons too).

(I'm fortunate that I finally found a GP and a neurologist that are supportive without offering pseudocientific explanations and treatments for my illness. This combination seems to be a rare exception.)

So I am unsure how these points could be publicly discussed in a helpful way for ME advocacy.

Anyway, I think on a list for this thread's potential endeavor, the S4ME papers on the PACE trial and on the Chalder Fatigue Scale should have their place, together with one of Jonathan Edwards' recent statements focusing the failure in most cognitive-behavioral research to adequately control for bias (the use of subjective or subjectively reported outcomes alone in open label trials)

Trish's recent response to the BMJ also might be relevant in this matter:
https://www.s4me.info/threads/bmj-m...020-greenhalgh-et-al.16286/page-3#post-286272

In short: I still think it would be helpful to have some lines about how to refer to biomedical research in advocacy, backed up with good references, and which arguments should be avoided.

Perhaps take this post as a basis: https://www.s4me.info/threads/a-pot...-know-and-understand.11610/page-2#post-206503

As positive references, this paper's perhaps still mostly up to date:

Edwards JC, McGrath S, Baldwin A, Livingstone M, Kewley A. The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem. Fatigue. 2016;4(2):63-69. doi:10.1080/21641846.2016.1160598 , https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4867862/

Added could be projects going on or being announced that are designed in a way that is able to collect reliable evidence on physiologiical abnormalities or at least document objectively observable abnormal patterns of symtoms and signs in ME and maybe even find evidence for causal factors within a couple of years. At the moment, I am aware of two studies on which I think at least one of these criteria apply:

The DecodeME study and the study planned by @PhysiosforME (see this thread.) (*)


Ilinks to mentioned threads and papers:

- S4ME briefing document on the PACE trial: https://www.s4me.info/docs/PaceBriefing3.pdf

- Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire (Wilshire, C.E., McPhee, G., and the Science for ME CFQ working group), https://www.s4me.info/docs/CFQ-Critique-S4me.pdf

See also Michiel Tack's critique of the Chalder Fatigue Scale (in his comment on the Cochrane review on Exercise Therapy) :
https://www.s4me.info/threads/my-comments-to-the-cochrane-review.15154/

Edited for a bit more clarity but still muddled, apologies for that.

Finally edited to add some links to mentioned documents and threads.

(*) Finally finally edited to replace the link to the members only thread with the public thread on the study (that also reminded my of the fact that it is a feasibility study -- so only a first but important step.)
 
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Continued from another thread -- hope that's OK.

It doesn't matter that credibility is distributed in a very unfair way. It's true that the BPS researchers are those who delivered the stuff that is most implausible. But I'm afraid much biomedical research on ME isn't really plausible either.

I think there is much bad research done also on diseases that are not framed as psychosomatic -- but it doesn't matter that much in these fields because there is already sufficient medical knowledge and good research that won't deny the physiopathology per se even if only some aspects are known for sure yet.

I don't think that pwME are more irrational or believe more pseudoscientific stuff than people with illnesses that are not framed as psychosomatic do.

But the latter to a certain degree can afford some pseudoscientific beliefs because there is at the same time so much medical knowledge and good research on their illnesses that their disease is not denied when they refer to some clinicians and researchers that promote pseudoscience and SCAM treatments.

I think the void of plausible claims based on sound biomedical knowlege made it easier for all the cognitive-behavioral nonsense to determine the dominant view on ME.

Patients aren't to blame if they find it easier to refute the more obvious than the less obvious nonsense.
 
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MSEsperanza said:
If until now, biomedical research couldn't rightly claim evidence of consistent pathological findings specific for ME or consistent abnormal findings with a plausible causal relation to the pattern of symptoms characteristic for ME, I think ME researchers and advocates should be aware that arguing otherwise could undermine their credibility and the credibility of biomedical ME research per se.
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I think this is both correct and highly misleading.

Our scientists do NOT have a validated diagnostic biomarker. Yes, that's true. Yet we have consistent markers in at least subsets. I also gave up counting biomarkers when they hit 2500. The problem is NOT that we cannot find things that are wrong, but that we have not yet found a definitive cause.

Currently the physiology looks more like a spectrum disorder, with patients sharing some subset of thousands of biochemical and physiological abnormalities, but nothing that is 100% present in all patients, though a few have some semblance of near total occurrence, such as with repeat CPET.

Another issue is that we have most of the biomarkers of sepsis and African sleeping sickness (metabolomics and miRNA profile respectively according to Ron Davis). So our markers are not unique to us. So they are not, at face value, diagnostic - though I think most people could figure out we don't have sepsis or African sleeping sickness, and so could be used.

So we do have lots of abnormal biochemistry and physiology. It just does not fit into the classical diagnostic pattern. Yet.
 
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One problem that arises, repeatedly, in ME groups, is that we latch onto hypotheses and don't like to let them go. This is common human nature. We are desperately in need of answers and help, and something comes along with promise and we invest our thinking in it. This problem is not unique to ME by a long shot. We also tend to make our researchers into idealised heroes.

Science is about refuting things much more than proving things. Most hypotheses will be proven wrong over time.

While I think some very few of our researchers might invest too deeply into their hypotheses, and the psychobabblers are arguably included in this list, I think researchers generally have to commit strongly to an hypothesis for a time, in order to get the research moving and get data. Yet they then need to follow that data. I think many do that.

We really need to back our biomedical researchers. We really do need to advocate for biomedical research. We really do need more and better funded science into the myriad of clues we already have. What we don't need is to confuse possible answers with proven answers.
 
This and the following post only partly on-topic here but also include some things discussed on other threads, mostly members only threads so I hope it's OK to post here.

As I'm often not able to reply to ongoing discussion on the forums, this is also a summary of some of my draft replies and questions that never get posted, or clarified thoughts from previous posts that perhaps aren't completely redundant.


Research into ME/CFS: Some thoughts on involvement of those affected by the illness being investigated

I realize there are research organizations that have been (co-)founded by patients' family members, and some of the research into ME/CFS, both biomedical and psychological, is done by those affected by ME/CFS (patients, carers, family members.)

Still it seems to me that a broader participation of patients on all levels of research is still missing. I think this lack makes it easy for researchers to claim that their work is patient-relevant even if it's actually still both scientifically mediocre and not relevant for the majority/ diversity of people with ME.

The DecodeME study is an exception and an achievement that I think is due to an open and respectful co-operation between on the one hand, individual members of S4ME and Action for ME (and I think also the support of other national patient organizations) and on the other hand, between those mentioned and an established, excellent University research team.

This direct and equal involvement of patient organizations including S4ME or at least individual forum members somehow representative of the 'spirit'/ goals of our forums in meaningful research I think is still an exception.

My hope/ question is: Could someday S4ME have enough capacities to 'officially' invite the most relevant national and international organizations that represent people with ME/CFS to an exchange on that topic?

Will suggest some points to consider in the following post.
 
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Long post split into 3 parts at poster's request.

Just some notes to the above in bullet points:

  • Research into ME/CFS rarely includes patients as co-researchers; research into other illness or symptoms considered as medically unexplained / not yet explained (MUS/ MNYES) often still seems poor when 'people with lived experience' / patient representatives are included.
  • An exception is the DecodeME study -- patients/ those affected by ME are not only somehow involved but I think also co-initiated the study and had and have a say in all aspects at all stages
  • Among pwME and patients organizations outside S4ME: It seems to me there is a widespread over-confidence in previous and ongoing biomedical research with regard to both potential biomarkers and a potential treatment. Of course we need to promote biomedical research. However, over-egging the evidence for certain presumed pathomechanisms damages our credibility.
  • More focus on investigating PEM I think would be a good thing -- if done properly. Again, there are exceptions/ good examples -- again, that's the DecodeME study (with regard to both a realistic assessment of the evidence and including reasonable PEM criteria), but also recent research by the Norwegian Fluge et al team, see here. )
Research on 2 day CPET needs an honest and sober review before replication studies are done (see @Snow Leopard's comments on that.)​
  • Some of our most important clinician-researcher-advocates have been involved in research into ME/CFS that often doesn't hold up to scrutinizing. I appreciate their work -- even small hints are important as, of course, are negative findings. Above all, I appreciate that clinician-researcher-advocates take our illness seriously and don't hesitate to say this publicly even if it can be and perhaps often is detrimental to their academic careers.
I think though that much more often a more honest and sober review of biomedical research into ME is needed, along the lines that has been done in 2016 by some authors who I think later were among the S4ME co-founders/ first members ( see thread on the paper here )​
  • It seems to me there often is an under-acknowledgment of the time it will take to find a biomarker and/ or an effective treatment (I think this under-acknowledgment is reflected in the results of the priority setting partnerships on ME
  • Related to all of the above: Specific disabilities and what could help in terms of specific illness-related needs are under-researched and there are no coordinated efforts to have adjustments for pwME; examples see next point.
  • Examples for ME-specific disabilities even in the 'mildly' affected/ lack of ME-specific disability devices/ support/ personal assistance:
The need to lie down / sit in a reclined position in public spaces, in public transport, at clinics' waiting rooms.

An ordinary wheel chair doesn't necessarily help with that and for those who are still able to walk, mobility aids that you can't only use when you need them and then leave them abandoned anywhere may in many instances rather be a barrier than an aid;

Support beyond special devices: ideally personal assistance for those with cognitive impairment ( even if the cognitive impairment is transient, if it's present at a considerable amount of time I think some sort of personal assistance is justified, but also: Which devices could help with pacing especially if the task to plan and adjust pacing is already too demanding? Can these devices be prescribed by a doctor?)​
 
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Part 2 of split post
  • Also I think related to the above mentioned over-confidence and under-acknowledgment: With regard to clinical trials, I think there's a lack of coordinated striving for the development of better outcome measures and lack of continued efforts demanding better trial design also for non-pharmaceutical research.
Maybe people think there is no need to develop better outcome measures because and to demand better trial design for non-pharmaceutical research because a) a biomarker will soon be found anyway or b) pharmaceutical treatments usually will be blinded so existing subjective outcome measures/ questionnaires are OK.

I think ad a) clinical trials on therapist-delivered non-pharmaceutical treatments will continue, and they will continue to allegedly provide evidence of the benefit of psychological interventions and exercise as treatments for ME and other illnesses unless properly designed, i.e. unless these kind of trials will use appropriate outcome measures that include objective outcomes; and b) better outcome measures would also improve pharmaceutical research.​

I very much appreciate all the work patient representatives do and have done and think there has been considerable progress.
Also, most or all of the points above probably are being discussed in the UK government working groups on ME/CFS and the results certainly will be shared beyond the UK.

Still it seems to me that most ongoing research could benefit already now from a more skeptical view, much like it is often discussed on S4ME.

At the same time, there is an enormous pressure on biomedical researchers who have been our long-time advocates and allies; if all the biomedical research that may be based on over-egged claims of evidence (also now on likely premature claims of certain pathomechanisms underlying Long Covid) and that now has recently got state funding e.g. in Germany will provide disappointing results, that will be a party for those who despise emancipated pwME and our advocates and allies.[*]

Especially, if at the same time those who despise us [*] will still be allowed to use bad trial methodology for their own research so they will continue to deliver alleged evidence for the benefit of exercise and CBT for any ailment.
 
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Part 3 of split post

So what if a research team like that of DecodeME were not an exception but the rule?

What, if it were us people affected by ME/CFS who had the means to suggest a research agenda at universities, got funding to develop treatments and disability aids and invite researchers/ institutions not (necessarily) affected by the illness to 'participate' in our research?

What would we need to consider?

How could we get other patient organizations interested in an exchange about these points?

What can we learn from the research done into Long Covid led by those affected?

Can we find allies in other patient organizations and researchers, especially those who have to face similarly poor research, both into mental / psychiatric illness and comorbid 'MUS' in established biomedical illness?


( I posted that on the public area but if anyone preferred to discuss member-only, feel free to set up or post on related threads in the members only area. Only now I e.g. remember this very related thread .)

[*] Edit: Probably the expression 'those who despise us' isn't helpful for a broader discussion. Sorry, I couldn't find a succinct and fair alternative wording now.

Edit 2: Added to the point "lack of coordinated striving for the development of better outcome measures": and lack of continued efforts demanding better trial design also for non-pharmaceutical research. Also edited some wording.
 
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Thank you for all those thoughtful comments. It's a lot to think about. Taking just one aspect. I agree it's important for researchers to include patients/carers in research teams, and for patients and patient organisations to have a say in what kind of research is done, and, in clinical trials, what outcome measures are used.

I am concerned that most pwme and even ME organisations don't have sufficient knowledge of how good science works to be able to judge the quality and usefulness of research, and there's a strong and understandable tendency to make too much of, and expect too much from, small or poor quality studies. I don't blame anyone for this - we are all desperate for biomarkers to validate that our illness is 'real' and effective treatment.

It can be a long hard slog as a patient to learn enough to enable us to avoid falling into the traps of false hope. I have done so myself many times. Sadly I become more and more cynical as claim after claim of finding a biomarker or treatment fades away through lack of funding or contrary evidence.

Very few patients have the energy, time, background knowledge and interest to do that hard slog. And even those who do can get caught up in supporting a particular line of research or work of a particular researcher and lose a wider perspective.

I guess what I'm leading up to is we do our best here on S4ME to provide an ideal environment with open discussion of all ME and related research, and have hoped that researchers and clinicians would join us in our endeavour by coming here to explain and discuss their own and each other's work and interact with patients/carers in developing collaborations.

So far that has has very limited success. Busy researchers' time for such involvement is extremely limited, and researchers and leaders in patient organisations generally seem to prefer situations they have more control over and, being human, don't like coming into an environment where their work is publicly critiqued.

I don't know what the solutions are to all these barriers to better research and to S4ME making a more useful contribution.

Just asking for more patient involvement is not sufficient, without training of some sort for patients/carers and researchers so that involvement is worthwhile.

S4ME has for me, and I think for others of our members, been a valuable training ground for this, but also has the down side that some researchers assume we all hold some of the unscientific or hypercritical views expressed in forum discussions by other members.

I get the feeling the forum, by allowing very critical discussions of the work of some 'favourite' researchers and prominent organisations, has become a no go area for many prominent in ME research and advocacy. All it takes is a criticism of a piece of research for that researcher to turn against us and spread the word, or for someone prominent in advocacy to join and find their words of wisdom challenged, or their rule breaking moderated, for whole swathes of pwme to turn against us.

Sorry to be so negative. I'm all out of solutions.
 
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