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

The title pretty much says it all but I'll waffle a bit more.

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?

ETA: Video clips would perhaps be the next stage. I'd like to see us produce a document that video clips can safely base their content on.

 

This would also be important for Nina Muirhead Education project.

 

I really like that idea, especially as the ME wiki is controversial at best with some of the info it provides.

 

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.

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.

The difference between CBT as used as a means of coping with an illness and the version (cant recall the official name recently mentioned on a thread) that is used for ME and CFS to overcome 'unhelpful illness beliefs'. So also a real understanding of the bPS fear avoidance/deconditioning model.

loads more but can't think right now.

Re the illness itself.
A proper understanding of what pacing is and what it is not (ie graded increase in activity).

 

Prognosis

 

All of the above, but also where we are actually at in terms of what we know research-wise... A lot of advocates, it seems to me, have read quite a lot of biomedical research which isn't particularly reliable/high quality... I cant think how to describe what i mean succinctly, but they up-play the biomedical research as if it'd already been PROVEN that ME is caused by... pathogen, immune dysfunction, metabolic dysfunction, vascular, <insert pet theory here> etc etc etc.

They say things like 'over 9000 peer reviewed papers have been published proving that it's organic not behavioural'. I'm not quoting anyone in particular, I've just seen that kind of thing repeated a lot over the yrs, & while it might sound impressive to the layman I'm not sure how factually accurate it is & imho it just sounds hyperbolic at best to your average Dr/Health prof. So i'd like to see something like @Jonathan Edwards's brief 'where we are' post (I'm sorry I cant remember which thread it was on now but it was written this yr,) detailing what we know, & what we don't yet know in terms of scientific progress.

(I wish I could find that post, I bookmarked it, but among the 100s of other bookmarks it's all just got merged into a blur sorry, hopefully someone else will remember it)

 

That the 'real versus not real', & 'physical versus mental' arguments are red herrings - and falling into the trap of saying 'it's real - it's not all in our heads' isn't nearly as helpful an argument as it appears to be.

ETA This is such a good idea @Andy

 

yes that's what I meant... people think it's helpful but it's not

 

https://www.s4me.info/threads/jama-...-by-anthony-komaroff.10281/page-2#post-181985

 

Facts need to be communicable. We sometimes forget that because we have all read papers and discussed minutiae that others will understand/ appreciate things on the same level. They don't. Even remotely.

I found that placing figures in another context helps. So making prevalence rates as a person number rather than a percentage gets across how relatively common the condition is .
Total.population affected as the size of a town / city.
Feeling like worst flu with a hangover etc

Video clips are the most effective things I have shared. Short, succinct- these play out well in a society ever more attuned to soundbites .
@Graham ' s PACE videos got across key aspects so succinctly. As did @Adam pwme ' s.
We need complex info to be broken down into accessible chunks.

Apologies if this is slightly off thread.

 

@JemPD Is this the file you mean? I use this every time I write to healthcare professionals because it's such a good summary and not too long. This is Jonathan Edwards submission to the Scottish Government enquiry.

 

It is and it isn't.

You are absolutely right that the facts need to be communicable. Ideally, if the forum does produce this document, then I'd like to see it aimed at a level that means anybody can understand it, no matter their understanding of research or experience in the ME advocacy field. Essentially I have in mind a primer of sorts - MEpedia have a number of these linked to from this page, https://www.me-pedia.org/wiki/Portal:Myalgic_Encephalomyelitis, but ours would be more focused.

Video clips would perhaps be the next stage. I'd like to see us produce a document that video clips can safely base their content on.

 

This is often overlooked. We need at least the basics on spotting bad research, because it will be thrown at us as "proof". Its not just psychosocial research either.

 

Terrific idea! It could be a series of short fact sheets?

 

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.

 

For Advocates, (especially formal or paid ones) surely the first requirement is;
Are we talking Advocates or advocates?

When dealing with Statutory services;

1. Advocates: to know and understand the legislation and legislative framework and person's entitlement.
2. Know what statutory guidance or other guidance is relevant ( even if you don't fully agree with it- if you get my drift!- NICE etc in particular)
3. Be able to state this at the outset, tailored/adapted to the particular circumstances.

In less formal situations, 'advocacy' with a small a, for a non professional lay person can be more flexible but still based on sound evidence. eg when speaking with school governing bodies etc?

 

Thanks but I think you have misunderstood. To repeat

You are talking about completely different subjects, that most likely we don't have the knowledge to address, although if you believe that those things are important, please do start another thread to see if we do have any members who can address them.

 

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.