What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

Agree that "[hyper]sensitivities" can have an unwanted emotional connotation.

In the world of autism they're often called "sensory processing differences" or just "sensory differences".

 

I managed to block my PEM maybe 10 years into my ME. That means there's some mechanism that can block PEM. Why couldn't someone have that mechanism blocking PEM even at the start of their ME? For me, cumin worked, so what if I'd cooked with cumin daily even before developing ME? Might I have developed all the other symptoms, but not had them flare up after exertion?

I'm saying that PEM hasn't been proven to be a core component of ME, but rather that evidence exists that it isn't a core component.

An official ME diagnosis isn't worth very much today, except for a few people in a system that provides some useful benefits from it. If someone develops a treatment that works on people with genuine, standard ME, but kills everyone else, that would be a different situation. For studies, insisting on standard PEM is reasonable. I just hate the thought of someone with non-standard ME suffering even more because they fit all the other criteria but are denied any support because they don't have standard PEM.

 

Would it be better to pause the detailed discussion of PEM and other content until we start the relevant documents? This is the sort of input that would be very useful.

 

But there isn't an 'ME mechanism' that we know of, and for all we know there may be six ME mechanisms. I think we should forget ME. ME/CFS is a clinical syndrome diagnosis that is centred around the idea that PEM points to some common component of the causal pathway- no more. As Trish says you don't have to have PEM all the time and it might take 6 months to be sure that someone can be said to have PEM but without that feature I don't see any reason to say they really do have ME, because we don't have a workable concept of 'really having ME'.

 

As indicated before I don't think there is a need to be so specific. I see no reason why a text should not inform professionals as much as patients. For the patient the objective is to say 'well someone just said you have ME/CFS, and this is what that actually means' and for the professional it is to say 'well, you thought you knew all about this or thought it was a load of hooey, and this is what it actually means'. The level of ignorance and the need for plain English are pretty much the same I think.

 

But what are we defining as 'needs'. Is it something that makes sense and that people can slot into their mind? But what if it is wrong and misleading?

The opening paragraph of that linked piece:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. ME is classified as a neurological disorder by the World Health Organization.

Is just plain wrong. And likely to mislead people into all sorts of ideas about this 'complex' 'neurological disorder' for which we actually have no evidence for 'affecting' any of those systems. It isn't even a disease in the sense tha most people will assume is meant. The slippery slope to the mumbo-jumbo of MEpedia is well lubricated in the ordinary mind.

 

I don't actually think this is about pitching too high, simply about avoiding conveying the misunderstandings that the field is awash with. It is at the most basic level of pointing out to people that there is no 'disease' called ME that is attacking them all over that clinicians and scientists know all about. There is simply the fact that lots of people are ill in much the same way.

 

OK, so we are in complete agreement.

 

Thanks for the great discussion so far, everybody! We've only been discussing this since yesterday morning but we've had lots of great contributions from more than twenty people and have made a lot of progress. Here's where I think we are:

• We have a priority order from @Jonathan Edwards that most seem happy with.
• We agree that at this stage, we're focusing on science-based information, not other supportive information such as benefits advice or useful aids for daily living.
• Several are interested in how to handle going into hospital, but there's disagreement over whether that should be with a 'passport' or a communication strategy. This might be something we could pick up later once we've got the top three priority items off the ground.
• We've agreed that the language should be simple and straightforward so that patients, clinicians and researchers can understand our documents equally and so that we don't have to write different documents for different audiences.
• We like the idea of eventually translating our output into different languages.
• We seem generally happy with the idea of a lead writer for each document who produces a draft and works on it with a small team in a private subforum before presenting it to the main forum for further comment before publication.
• An additional possibility would be for the lead writer to introduce the topic on a members-only thread to invite ideas and answer questions, allowing one or two weeks before starting their draft.
• Depending on who the lead writers are, one or two documents could be on the go in parallel.
• We think it would be a good idea to start with just one document, to try out our method.

I hope I've done the discussion justice!

And as a reminder, here are @Jonathan Edwards' top seven proposed priorities (there are seven more):

1. What is ME/CFS? (Symptoms, diagnosis)
2. What is meant by PEM and why it is significant, its relation to fatigue and fatiguability
3. Prognosis, including variation over time and likely difference in young people
4. Treatments (the fact that there are none, apart from for individual symptoms such as insomnia and headache)
5. What PwME can do for themselves (pacing?)
6. The realities of severe and very severe ME/CFS and the need for evidence on how best to handle them
7. Environmental and food sensitivities, their management and impact on hospital care

I think we're already in a good place to start. Shall we begin by finding a lead writer (who will also essentially be the project leader) for Item #1, 'What is ME/CFS?'

Speak up if you want to do it!

If there are multiple candidates, we will need to think of a way to decide among them. All part of the learning process!

@Jonathan Edwards, I hope you'll consider being part of this...

[Edited to add] Prospective lead-writers! Would you like to give us a sense of your background that would make you a good fit for the role?

[Edited to add] But please note @Trish's request here for us to slow down a bit and let the committee have input into how this should be run if it's to be an official S4ME project, and to give others on the forum a few days to catch up! (Very sensible )

 

I'm bummed that I cant be part of this, i'd like to be. But I have 3 big hospital appointments & some major work that needs doing on my house which will should take me out of circulation until around May (shouldnt be here at all really just couldnt stay away) so I'm unable to commit.
However I may be able to offer proof reading & will definitely comment as & when i can on any threads regarding each draft or pre-draft.

Ack my heart is with this project, & it'd be an honour to be part of it, sorry i cant offer more

 

I am very happy to be part of it. For various reasons, especially having just written my pieces for Qeios and not wanting to get repetitive, I don't think I am the best person to lead writing, at least for the first projects. There are several others here who write with a lighter touch than I do, and with impressive clarity.

 

So sorry, @JemPD! We've all been there (and a lot of us are there right now). But I think this project will still be going by May and that there'll still be plenty of ways to contribute.

Thanks again to @Nightsong for speaking up so powerfully for the need to do this. It's been inspirational!

 

Prospective lead-writers! Would you like to give us a sense of your background that would make you a good fit for the role? (I will edit this into my post above - should have thought of this earlier!).

 

Thank you, @Jonathan Edwards, much appreciated!

 

That’s a great summary thanks @Sasha.


Have people yet agreed to take the discussion private before asking people what they’d like to see under a particular topic in a member thread, is that consensus here or has that been agreed already privately?

I’d like to see what other members especially those who’ve not yet commented think about the topics before stuff gets decided behind closed doors. I’ve given my own priority on the treatment subject already but I think most members will have other stuff on on weekends especially and might like a chance to say something. Also some more specific points on topics could be helpful to writers. So I’d vote for @Trish suggestion of allowing wider participation to start the project off.

 

Thanks for making me look at this again! I've presented this as an option but looking now at how many 'Likes' Trish's post on this and how many mine didn't, I don't think I've represented the consensus (sorry, @Trish!). So let's go with it, I think, unless the lead writer has a massive objection.