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

MSEsperanza said:
https://www.s4me.info/threads/jama-...-by-anthony-komaroff.10281/page-2#post-181985
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So this is the post that @MSEsperanza linked to.
Jonathan Edwards said:
I do not want to destroy hope and I don't think it would be right to say there has been no progress and no reason for hope that there will be much more. But I think the reality of the situation is rather different from what many PWME assume.

Those who support the BPS model dismiss biomedical studies not because they are small and not replicated so much as because they really don't look likely ever to amount to much and are consistently hyped. Moreover, nobody admits they were wrong when they find the results are not repeatable. And you do not have to be a BPS enthusiast to think that. I have a lot of very reasonable colleagues with no special commitment to what ME is about who will look at the list of studies flagged up by Komaroff and say to themselves - 'well that looks like going nowhere much'. Science isn't about how many studies you have done. It is about fitting things into a single solid, plausible story.

The way to bring physicians and researchers on board, to my mind, would be to write something very different. It would start with admitting that nothing substantive has yet been identified that indicates what the causal mechanism of ME really is. But it would go on to list the real achievements of the last ten years. Those for me would be things like:

1. Epidemiological studies have shown that there is a consistent cohort of people, independent of geography, who suffer from a well defined clinical syndrome that deserves to be distinguished by the name ME/CFS.
2. Re-analysis of trials of therapist-delivered treatments has established that a psychological model of disease perpetuation is not supported and made very implausible.
3. A population based ME Biobank has been set up and is distributing samples worldwide.
4. Well executed trials have shown that B cell depletion is not a useful treatment.
5. Immunological and microbiological studies have indicated that it is very unlikely that ME causation relates to an NK defect allowing reactivation of, or repeated infection with, viruses.
6. A number of studies indicate that mitochondrial metabolic pathways may be diverted, perhaps involving amino acids, although the exact nature of any shift has not yet been identified.
7. Preliminary genetic screening and epidemiological studies have suggested that there may be a significant heritable aspect to ME. Plans are being developed to set up more powerful genetic screening studies.
8. A number of studies are focusing on the key feature of post exertion malaise and beginning to clarify the physiological changes that can be documented.

That is just off the top of my head. If I was attending a general physician education meeting and someone flagged up that sort of list in 2010 (before I ever thought about ME) I might think 'maybe this is important and interesting after all'. If the speaker had gone through a list saying there is lots of evidence blah blah I would have thought the opposite.
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So what Jonathan suggests in that post covers quite a lot of
Andy said:
The idea is to provide a document that either provides those things that we have evidence for, either positive or negative, or those things that we don't in as brief a format as possible.
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Trish said:
I assume you mean things like what biomedical evidence we have about ME that has been confirmed by large enough studies. The list would be rather short.
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This is entirely true, but it would also be useful to include promising results that really need to be replicated.

Perhaps we should begin by finding ways to segment or organise the information, to help us put it together?
 
Yes @MSEsperanza that is exactly the post I was thinking of! :) brilliant thanks.

Jonathan Edwards said:
I think the idea is to stick to what can reasonably be called facts. Promising results are something quite different.
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Precisely.

It really strikes me as unhelpful when advocates/sufferers blog & promote things that can't be proven, all their hard work can so easily be turned against us. As I said in my earlier post all this 'over 9000 peer reviewed studies prove that's its a physical not mental' is just as unhelpful as saying nothing at all imho. So avoiding both of those pitfalls would be a big help.
 
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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So maybe working with Nathalie on a set of factsheets to go with her videos would be useful and avoid duplication?
 
I think Jon's submission to the Scottish government hits the nail on the head, but there also needs to be a more approachable version for folk who are not technically minded. I know that most people here would regard this submission as being both simple and clear, but, believe me, there are many people who would struggle with it.
 
Sly Saint said:
Understanding of the flaws in the methodology of the majority if not all psychosocial research into ME or CFS or whatever the researchers choose to call it, including ambiguity with regards diagnostic criteria
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Especially where investigators clearly admit their appalling lack of understanding of trials methodology, publicly in writing ... without even realising the are doing it!

For example:

Michael Sharpe et. al said:
We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience. We also note that, even in Wilshire et al.’s analysis, the relative rate of recovery with CBT and GET was approximately twice that with APT and SMC alone.
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[my bold]

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x

As scientists' gaffs go they don't come much better than that, but there will be lots more I'm sure. The very fact they publicly stated this, confident it supported their case, is surely the strongest indication of their ineptitude.

There must be many such example, including twitter, where their lack of scientific rigour, and lack of comprehension of it, is publicly on show.
 
Graham said:
I think Jon's submission to the Scottish government hits the nail on the head, but there also needs to be a more approachable version for folk who are not technically minded. I know that most people here would regard this submission as being both simple and clear, but, believe me, there are many people who would struggle with it.
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Exactly.

If coming to this cold then there's a lot of foundation knowledge to gain before understanding this stuff, even if you are technically minded.

And for many people their particular aptitudes are simply not suited to understanding much of this.
 
Sly Saint said:
The basic history of ME, and CFS:
the role of some of the key players, from an overall international perspective. The 'adoption'of/changing to CFS as a name as benefited insurance companies, the government, and in effect changed what had been considered a biological problem into a mental health issue. The role of the PACE trial (and NICE guidelines) in establishing CBT/GET ie psychological therapies as standard treatment accross the world.
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I’m just going to say that, here on the US side, there is a lot of disagreement about the history of this disease. I just read something a few minutes ago that was written about the history and I wanted to cry. (It was in ME-pedia and I know that, according to Wiki rules I shouls have fixed it, but I don’t have the brain power.) it might be better to stick with science rather than history.
 
Andy said:
The idea is to provide a document that either provides those things that we have evidence for, either positive or negative, or those things that we don't in as brief a format as possible.

The more our advocates can base their arguments and statements on existing evidence, the more convincing they can be.

So what do you think are the basic facts that our advocates need to know/understand?
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Would this resource be available to international ME advocacy groups? ME Awareness NZ would almost certainly make use of such a resource. And with such limited capacities doing this work once is ideal. I wish I had more brain juice to jump in and start collating. But I will start thinking about specific topics for such a document and if I feel I have anything of value to add will try make it one orderly-ish post.
 
It’s my opinion that one of the best things an advocacy agency can do when approaching the science is to be very clear about the category of evidence with which they are dealing. My understanding is that @Andy is keen for a document outlining the first category I have here. That would be extremely valuable.

I would also like to lodge a potential way of conceptualising the state of evidence. Our focus might remain on the first category, but maybe we could consider this an opportunity to make a recommendation of how data in each category might be beneficially handled. Or a range of approaches as we might not all agree (and ultimately it is up to each group to come to their own approach).


Core Data
The theories, treatments etc for which we have rigorous, quality, and preferably objective evidence.

Example:
For me I find the repeat CPET tests among the most compelling evidence. From my understanding it uses objective measures, is a reasonably established procedure, and has been replicated in population groups across the globe.

Repeat CPET research would be a strong building block towards the idea there is something wrong with our aerobic function. It points to a deterioration in physiological functioning that lingers at least 24 hours after the first episode of exercise testing. It also contributes well to the idea that pwME self-reported worsening of symptoms after exertion is founded on a physiological mechanism.

If I gave some bullet points what research would you put there and what are some sound conclusions we could come to? Hat off to Jonathan Edwards, his list is a great compilation.

A complication will of course be that we are likely dealing with various subgroups in some way.



Ideas Still Needing Further Hypothesis Testing
The theories, treatments etc for which we have some interesting observations, subjective evidence, pilot studies, questions arising from the findings of other research, contradictory findings etc but as yet we don’t have enough rigorous hypothesis testing to have eliminated alternative explanations.

This would be a lengthy list I imagine, but it might be helpful for advocacy groups to not only know some of the key theories, but also to realise that just because a pilot study might have been promising does not amount to good evidence as yet. And on the other hand just because there hasn’t been rigorous hypothesis testing as yet does not discount us from mentioning it or seeing real world applications that might help our folks—potential for harm being foremost in our minds.

Being too dogmatic as an advocacy group about demanding evidence can come with its own set of risks including foreclosure on emerging ideas before they have been adequately explored or marginalising some ME subgroups because it might be a frustrating, sometimes contradictory process to tease out the data. I would advise a balanced approach to this category but of course every advocacy group will need to make its own decisions on its approach to this category.
  • Every proposed mechanism for ME is in this category so far (those being tested currently or with the best evidence could be mentioned by name).
  • Every proposed treatment for ME and for many symptoms thus far (key ones could be mentioned by name).


Ideas With Poor Evidence
The category of ideas which have repeatedly had negative results, been largely disproved by other evidence or which have been paraded as having better evidence than they actually have.
  • GET/CBT
  • Psychosomatic basis for ME
  • LP
  • Immunological theories with repeat negative results.

There are also probably a number of physiological ideas in this category which I can’t think of right now.


Anecdotal Evidence
Advocacy agencies need to be able to recognise when ideas are anecdotal. It’s not to say pwME experiences are invalid as a source of data but we need to be cautious about false hope, quackery and anything that can cause harm (including psychological harm). Our own polls etc are suggestive of certain things without being held up as proof of any theory.


The Skills to Critically Evaluate Research
Many agencies will have folks with some form of training in research design and critique. Nevertheless a guide to the fundamentals of these skills might be of benefit.


Please be somewhat understanding this was written off the top of my head while experiencing cognitive dysfunction.
 
NelliePledge said:
So maybe working with Nathalie on a set of factsheets to go with her videos would be useful and avoid duplication?
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Also, given that some of this sort of work has already been done by various advocacy groups, could we draw on that somehow and adapt to our purposes, to save duplication work? For example, any advocate needs to know the most commonly used diagnostic criteria - and the problems associated with them - and there already are comparison tables out there that could be used (after asking nicely of course), with additional comment if necessary.
Andy said:
Yeah, considering the topics that would be covered it might well have to be split into a number of documents, especially if we are giving the necessary references to support the facts stated.
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I like the idea of a series of fact sheets. Taking a bite-sized approach would make the project more achievable, too, I think. Different groups could work on different topics though in this case it would be a good idea to have a template structure so that when all the info sheets are put together they form a cohesive whole while still making sense individually.

But it would be a massive enterprise and a difficult one given the paucity of solid evidence and inevitable disagreement on what counts as such and what doesn't, combined with the need to simplify in order to communicate at a non-expert level. Another argument for working with for example Nathalie.
theJOYdecision said:
The Skills to Critically Evaluate Research
Many agencies will have folks with some form of training in research design and critique. Nevertheless a guide to the fundamentals of these skills might be of benefit.
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Good thinking.
 
NelliePledge said:
So maybe working with Nathalie on a set of factsheets to go with her videos would be useful and avoid duplication?
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Duplication is not a problem I think.

An astute individual finding a new topic that interests them, will want to explore that topic from a variety of angles. If the message they read is explained in a similar manner from a number of sources, that repetition will only help to consolidate understanding.
 
i was thinking more about duplication of effort that working together might save some energy for those doing the work.

Also I get the point about reinforcing messages in different sources but that assumes the intended audience all have the time, inclination and energy to watch a video, and read it’s accompanying fact sheet and then read further.
 
https://www.omf.ngo/wp-content/uplo...Clinician-Summit-Post-Summit-Announcement.pdf

https://www.omf.ngo/2019/09/01/new-guidelines-for-diagnosing-and-treating-me-cfs/

The second link above includes the kind of information that may be relevant here. I wanted to link to Dr. Cindy Bateman’s work in the U.S. She was part of the group who delved into all the research studies for the I.O.M report, which could only draw upon the best designed studies (too few to be comprehensive) for their final report, but in the process this group familiarized themselves with the whole research picture so far. As well as being one of our acknowledged « expert clinicians », she has worked at the top level to educate, organize and advocate on our behalf. She works out of the Bateman Horne Center in Salt Lake City and has many videos and informative documents on ME/CFS, which might be useful. I realize the history differs between the U.S. and the U.K, but as we are all trying to come to grips with the « same animal », broadly speaking, we might find their work helpful.
 
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