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

So this is the post that @MSEsperanza linked to.

So what Jonathan suggests in that post covers quite a lot of

 

Re: videos.

 

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?

 

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

 

Exactly this.

 

Yes @MSEsperanza that is exactly the post I was thinking of! brilliant thanks.

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.

 

I'd not read that I don't think @obeat thanks it looks great & thks as always to the author too

 

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.

 

Spot on. Communication is key, not death by powerpoint etc. Communication only works if the receiver gets the message.

 

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:

[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.

 

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.

 

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.

 

Yes there are a fair few disagreements over here about the history too @Wilhelmina Jenkins so you may well be right.

 

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.

 

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.

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.

Good thinking.

 

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.

 

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.