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

[Peter T]

Given much about ME has not been scientifically evaluated, and often patients or those supporting them have only general good advice to go on. However there are situations where that is not relevant for us. The most obvious example is that being generally fit and active is a good thing in general but is very problematic with ME

A possible information sheet could be discussion around when what might be seen as general good advice is irrelevant or even harmful for people with ME?

 

[Sasha]

One thing I find very useful are our threads on practical issues such as the current one relating to pillows sharing experiences and specific products. However I am not sure how such could be condensed into handouts given different products are available in different countries, what is available changes over time, much relates to personal preference and we lack objective evidence. Would linking to existing discussion threads be useful in the context of information intended to be shared to a wider audience or might that inhibit what people are comfortable sharing?

Here are some possible/existing threads

• Manuel wheelchairs
• Electrical wheelchairs
• Night ware [...]

This would be very useful info but this project is about us doing what we're uniquely qualified to do and our charities apparently aren't: which is to provide science-based information to cut through the bilge that's currently out there and is harming patients in their hundreds of thousands. 'Patients, clinicians and scientists working together on the science' is our unique selling point and our superpower, and gives us a chance to shift the narrative.

It does beg the question of whether we also ought to be producing other info, such as tips on day-to-day living as you suggest but for now, at least on this thread, I think it's probably best to keep our focus.

 

[Jonathan Edwards]

can I just ask, is #7 on the list actually an accidental new line and should instead complete the sentence in #6?

Sorry, no, I have edited. Number 6 did not make sense.

 

[Jonathan Edwards]

How about having a look at these first and maybe they need just some amendments?

(and maybe EMEC would then even agree on the amendments and the sheets could work as shared S4ME/ EMEC documents?

https://europeanmecoalition.com/what-is-the-illness-me-cfs/

Links to fact sheets at the bottom

The EMEC description is not too bad for what one might find in a medical textbook. But it glosses over so many misconceptions about the illness and uses jargon terms like pathology and prevalence. I think we want something in plain English that patients can understand, but at the same time is also more transparent for professionals because it does not rely on common medical assumptions that don't actually work for ME/CFS.

Personally, I don't care how many people in Europe have ME/CFS. I doubt it matters to anyone except politicians. There is someone in your near neighbourhood with ME/CFS even if not you; that is all people need to know, and best said by 'about one person in 400 has...'.

 

[obeat]

I would prefer orthostatic intolerance to be higher up the priority list because it informs how we pace ourselves, and leads into severe/ very severe cases.

 

[Jonathan Edwards]

I would prefer orthostatic intolerance to be higher up the priority list because it informs how we pace ourselves, and leads into severe/ very severe cases.

I think it is going to figure significantly in several of the top topics. My thought was that a piece on unpicking the confusions abut PoTS and so on would be lower down the priority list.

 

[Sasha]

I would suggest a descending priority list something like this. I think it can be done to be suitable for patients, carers, researchers and professionals alike.

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
8. Discussion of care currently offered by ME/CFS clinics - the reasons why exercise and CBT are not appropriate.
9. How to interpret anecdotes about cures/improvements from e.g. supplements, Lightning Process
10. Orthostatic intolerance in ME/CFS (including the controversy on mechanism/treatment)
11. The current state of ME/CFS research and funding (need to know what a hole we're in)
12. How to judiciously donate to and support research, given the limitations of our charities
13. A warning about info from charities and advocacy groups
14. The need for patients and professionals to establish trust through transparent, well-informed discussion of the illness (based on solid science, so as not to be citing rubbish)

I'm all in favour of this list! People may vary on what order the priorities should go but I don't think it matters because I think we'll be knocking these short items out fairly quickly, once we get going. I'd still like to pursue the hospital passport thing but will start a thread on it at a later date; and I agree that we can just point to disability advice and similar things on the charities' websites, because they already do those things well and our focus for this project is on science-based info/advice (with the option of widening that focus later).

So! Are we broadly happy with Jo's list and are we ready to start talking about how to proceed?

If we are, I think we should start with the proposed first priority document - 'What is ME/CFS?' and consider how this thing should work.

I propose:

1. Set up a private subforum that people can join if they feel they can make a strong contribution to the document (whether in terms of writing it, commenting on it, or copy-editing it).
2. Choose a lead writer who will produce a first draft.
3. Invite comments on the private subforum for the lead writer to consider.
4. Produce a second draft.
5. Put the second draft to the whole forum for final comments, bearing in mind that not all will be taken on board.
6. Produce a final version and publish on the forum.

Rinse, repeat for the other documents on the list.

Thoughts?

 

[Trish]

I agree that at some stage in each document we will need a small group to go to a private space to organise and polish a final version.

I think it would be worth at least for a week or two at the start for each document doing a members only thread where anyone can join in and add ideas. The person leading could set it up rather as we did for the feedback on the NICE guidelines with several reserved posts at the start of the thread where the leader gathers useful ideas as they appear on the thread. Then take those summaries to the private space for final workup into a document.

 

[Peter T]

I agree that now we should have a go at the first document and see how it works out. Both @Trish and @Sasha have good practical suggestions.

Then out of this will grow clearer ideas of how a larger project might work.

 

[Sasha]

I think it would be worth at least for a week or two at the start for each document doing a members only thread where anyone can join in and add ideas. The person leading could set it up rather as we did for the feedback on the NICE guidelines with several reserved posts at the start of the thread where the leader gathers useful ideas as they appear on the thread. Then take those summaries to the private space for final workup into a document.

I can see the value of pulling in wider thoughts from the forum ahead of drafting but if we're doing these documents sequentially (which might be wise, given that we might have a very limited pool of people who would be actually working on them) then adding a week or two would slow things down a lot. For the 14 on the list, adding a week's pre-discussion would add three months to the project; adding two weeks would add half a year. And there's also the question of how much value it would add, given that there would already be a team with presumably some expertise working on this, with the whole forum able to comment on the draft that is produced at the end.

One option would be not to wait for team leaders or for work to start but simply to set up one thread now on the 'What is ME/CFS' topic and invite comments for a week, and then set up 13 threads straight away, one for each of the other documents, and ask people to put comments in there, ready for when work is ready to begin on those later topics.

It's an interesting idea but I'm not sure about it. On any project, I think there's a tension between involving everyone and keeping things contained enough for efficient working, and I'd be particularly interested in hearing about this idea from people who might be thinking of leading on one of the documents.

Thanks, @Trish!

 

[Sly Saint]

sorry to keep repeating this but I really wish the issue of how severity is described/classified or whatever could be improved.
The latest thing backed by the MEA appear to have created yet another set of definitions which again I find wrong for 'moderate' patients.
I'm not thinking too great at the moment so again will link to the thread I raised it on a while ago
Why are the majority of pwME rarely mentioned? | Science for ME

 

[Trish]

For the 14 on the list, adding a week's pre-discussion would add three months to the project; adding two weeks would add half a year.

Only if they are done one at a time. We could run 2 or 3 in parallel with different writing groups. I don't think we should rush it.

 

[Ash]

Going back to Sasha's original list after some suggestions I would suggest a descending priority list something like this. I think it can be done to be suitable for patients, carers, researchers and professionals alike. That avoids a them and us flavour to anything.

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
8. Discussion of care currently offered by ME/CFS clinics - the reasons why exercise and CBT are not appropriate.
9. How to interpret anecdotes about cures/improvements from e.g. supplements, Lightning Process
10. Orthostatic intolerance in ME/CFS (including the controversy on mechanism/treatment)
11. The current state of ME/CFS research and funding (need to know what a hole we're in)
12. How to judiciously donate to and support research, given the limitations of our charities
13. A warning about info from charities and advocacy groups
14. The need for patients and professionals to establish trust through transparent, well-informed discussion of the illness (based on solid science, so as not to be citing rubbish)

I would expect there to be significant repetition of material across the different topics but I don't see that as a problem - it would emphasise how the wider perspective all fits together.

I personally think at this stage a hospital passport is simply a way to provoke resistance and lack of trust. A one side of A4 information sheet on managing sensitivities might be useful but without reference to an individual. I think individual needs should be given verbally.

I suspect that advice on applying for disability benefits exists and can just be pointed to.

In the treatment section could there be a way to convey and emphasise the point that although ME the condition itself has no validated treatment, that doesn’t equate to people with ME symptoms or diagnosis being untreatable patients.

That symptoms reported by people with ME are likely to go uninvestigated or under investigated over this leap from the patient having an untreatable condition and on to the patient being themselves untreatable.

That ME doesn’t amount to a protective mechanism against disease. That a patient having ME does make timely diagnosis of progressive disease more difficult.

Given that the known symptoms of ME are so numerous and may be so severe, descriptions of these may lead doctors to ignore the red flags for other disease.

It’s not yet possible to link symptoms of ME to ME in individual patients. There is a lack of any validation for specific biological abnormalities that might be found on available tests so as to rule in ME as cause. So it’s very important to be vigilant and rule out other causes that may well be treatable.

I read the other day of a woman who died of undiagnosed stomach cancer , likely undiagnosed because her stomach problems were attributed to severe ME.

I don’t know anyone with ME including myself who hasn’t had exhausting battles trying to get diagnosed with really common illnesses, on grounds that it would be ridiculous for me/us to think that we could possibly have another illness with similar symptoms to ME.

I think this is the main reason people with ME suffer. We are effectively barred from accessing healthcare even where our symptoms may warrant urgent investigation.

 

[Trish]

I think we need the initial couple of weeks forum wide discussion, even if it does slow things down. I could, for example, pick my favourite bugbear topic at the moment, defining PEM, gather a few people who agree with me, and spend hours refining a document, only to find wide disagreement when we present it for approval.

I would rather set up a members only thread, share my ideas and questions in the opening post, and open it for discussion for a couple of weeks. Then when there seems to be some level of agreement, pick a couple of volunteers to work on it with in private before running it past members again, then finalising it.

 

[JemPD]

I think we need the initial couple of weeks forum wide discussion, even if it does slow things down. I could, for example, pick my favourite bugbear topic at the moment, defining PEM, gather a few people who agree with me, and spend hours refining a document, only to find wide disagreement when we present it for approval.

I would rather set up a members only thread, share my ideas and questions in the opening post, and open it for discussion for a couple of weeks. Then when there seems to be some level of agreement, pick a couple of volunteers to work on it with in private before running it past members again, then finalising it.

Seems sensible... in similar way to what has been done for letters etc previously.
Better to have realllly good results that take a little longer, than to rush it. Particularly if it's to be 'S4ME' content.... it needs to be inputed into by as wide a membership as possible, at least at the outset.

 

[Haveyoutriedyoga]

I personally think at this stage a hospital passport is simply a way to provoke resistance and lack of trust
.

Interesting, why?

 

[Nightsong]

Should definitely take our time at first. It might be useful if writing groups could have input from people at all levels of severity & those caring for the very severe & those with experience of the paediatric context?

Something else that it might be useful to have (maybe not at first) would be a section for people on how to evaluate claims made about different interventions, not so much to tell people what to think but rather to show them how to think critically about a lot of the information that they will inevitably come across. There's a lot of other wisdom on S4ME that would also be good to distil into, maybe eventually, a book.

On welfare benefits - British ones seem to change every few years (IB to ESA to UC, DSA to PIP) so any specific information would be out-of-date very quickly but pointers to other resources & links to ME-literate benefits advisory services (Sheffield?) might be useful to include. Perhaps a supplementary Wiki page with up-to-date links?

I have done that and the answer was no thanks. All the charities have agendas linked to beliefs. None of them produce the sort of disinterested neutral educational material that medical education normally makes use of. (Or used to!) I have talked to Sonya and to Charles and they know full well what views are here and the huge people resource we have here. They want to do things their way.

That is really a great shame. Even if we think the large national charities like AfME and MEA are a lost cause for the time being, would there be any local or other national ME/CFS groups that would be likely to add their support to the finished product?

 

[bobbler]

One thing I find very useful are our threads on practical issues such as the current one relating to pillows sharing experiences and specific products. However I am not sure how such could be condensed into handouts given different products are available in different countries, what is available changes over time, much relates to personal preference and we lack objective evidence. Would linking to existing discussion threads be useful in the context of information intended to be shared to a wider audience or might that inhibit what people are comfortable sharing?

Here are some possible/existing threads

• Manuel wheelchairs
• Electrical wheelchairs
• Night ware
  
• Compression garments
• Salt, etc
• Pillows
• Bed linen
• Mattresses
• Recliners, couches and day beds
• Ready meals
• Food prep
• Air fryers and slow cookers
• Ear phones
• Fans
• Air purifiers
• Sleeping pills
• Pain killers
• Visiting hospital
• Etc

Also if we were to share such threads more widely would managing spam and commercial promotors become an issue. However for me these threads illustrate how there are very few or even no contexts where there is an accumulation of experience. Certainly most specialist ME/CFS services are failing to do this and if local groups support groups are doing this it is not available to a wider audience.

There are some relevant MEA handouts and some social media discussion such as on the MEA Facebook page, in deed Charles Shepherd’s participation in such threads is very valuable, but what is out there is not easily accessible to most people beyond those regularly involved with relevant social media outlets.

[added to the list]

I think on top of it is the issue that the needs beneath these things aren’t understood. It’s the ‘just fatigue’ cliche so no one realised we have to spend a fortune on pillows and heat pads including finding the right ones - and how. Important getting the bed genuinely comfortable is but how hard that is

and I’ve had air fryers suggested but people don’t realise if you are severe it’s a different set of needs because standing up to shake that and cleaning it as least semi regularly is a big thing (‘just a quick wipe’ isn’t that in energy bank of those more ill)

so there is something useful of this expanded discussion to spot the gaps that wouldn’t be there in heakth + OT + care + disability needs being understood because of them continuing to start doing these by picking up old documents based on the old paradigm that’s opposite to PEM and has a ‘challenge’ and mind bs thru it instead of starting from scratch

and the fact that whether it’s even right for many other illnesses or disability some of these come from cliches of attitudes in the system in general of ‘motivate all disabled people’ and thinking about the ‘can you do’ but not understanding the ‘good rest’ issue and avoiding exacerbating pain when it doesn’t involve just tick box recondition Orr maybe painkillers ‘because the rest isn’t nhs’ or whatever. But given their talk about ICS/ICB being about integrating things and their hollow nonsense about not every management technique involving pills they’ve limited it to meaning ‘jolly the children’ CBT. Not realising how quickly debilitated we become from not having someone stepping in to sort an ongoing noise issue and help getting a bed (and recliners) able to meet the needs re rest. Partly because rest was made a dirty word, as was sleep

in the jigsaw/ making sure things are coherent (and I like the ohysiosforme stuff and admire how short and audience focused some of their items have been so don’t mean all the pieces should be long just that they all ‘fit together’ and these underlying messages of paradigm are consistent so people will eventually get penny-drop of what me/cfs is) I think getting this ‘paradigm’ and the ACTUAL’gist’ of list of needs (specifically including the ‘get used to the fact we are needing to be in bed a lot and have other symptoms that means that has specific needs) that keep getting deliberately twisted by I think even BACME like it’s all not allowed taboo - because it’s not rehab or whatever focused ie falls between the cracks. But all these parts do need to understand that context and that needs to come thru gently across all docs done (even if not mentioned they need to fit together neatly into ‘a concept’)

the thing is even if some things aren’t for eg an OT or GP or specialist to provide weve an issue where the things many of us rely on have been and still are suggested as just eccentric or behavioural because our needing x pillows or amount of rest and needing to recline etc aren’t being described, seen, logged (but thought of as a problem rather than an important aspect of management and maybe having a chance of slowly improving). And they see us needing lots of rest as a behavioural issue to be changed rather than a need and a symptom and if we don’t we can function less so their approach is the opposite to what helps both short mediums and long term for OUR HEALTH (unless you are strange enough to try and reword health as ‘acting the right way even when your body is getting worse and worse due to it’)

 

[bobbler]

This would be very useful info but this project is about us doing what we're uniquely qualified to do and our charities apparently aren't: which is to provide science-based information to cut through the bilge that's currently out there and is harming patients in their hundreds of thousands. 'Patients, clinicians and scientists working together on the science' is our unique selling point and our superpower, and gives us a chance to shift the narrative.

It does beg the question of whether we also ought to be producing other info, such as tips on day-to-day living as you suggest but for now, at least on this thread, I think it's probably best to keep our focus.

I think one of s4me big usp on this is that we genuinely seem to have people from the full spectrum of severities

I think this talking about things without undermining someone milder ‘has the same thing’ in the sense that bad treatment or a few bad illnesses/incidents and they get more severe is vital. The idea of it being a ratchet/quicksand. Even when specific sheets or sections might be needed to list the different needs and what the energy envelope, symptoms vs environment’look like’ in reality (I think this is where we’ve fallen down with getting others to understand how debilitating it is but also how to someone severe landing on them for a twenty minute conversation is knocking out an unimaginable amount eg they might have been able to brush their teeth that day and now not - and of course teeth brushing is as much a priority for us as them as a healthy person - they are just using awful cognitive dissonance solutions to not realise how far out they are placing their bar of what ‘one spoon’ covers as if there’s an ‘but of course then there is the ‘sundries energy’)

I’m all for big picture brainstorming now so these all fit together and be the most tailored pieces that all work to coherently get this bigger picture across of the new paradigm instead of old.

I do think that in order to not lose the usp we need to hear in mind making sure the pace (despite ambition) is such that those more severe can keep up with and input into these. And that’s the key is not just siloing them to ‘the severe/very severe documents’ . Not that we’ve ever done that here of course but I thought I’d underline it in the ‘hiw much do we bite off’ stage. I’m aware we’ve also a few things that seem to be putting time pressure on (like interim plan/others doing a bad one if we don’t get there first) and the way to manage that is to produce smaller but good stuff and signal our intention , rather than rush to get there first but have less good examples maybe ? It’s an awkward one to say because I think we are all on the same page anyway so it’s a granny suck eggs point!

There is huge benefit of having all documents making sure they are keeping cohesive to the illness being that full spectrum and how those more severe often have had bad luck or it’s that slippery slope of as your illness gets worse eg your rest, bed, noisecetc needs increase but the adjustments are often too slow to meet these (and might involve them doing work - even when someone helps getting a new mattress is impossible to avoid someone severe exerting just to check it’s comfy) .

fir the benefit of all severities I think this message coming thru that there are consequences and deterioration that moves people up and down these and that the mild, medium, severe, very severe aren’t separate diseases or underlying conditions BUT have vastly different limits - so a layperson ‘thinking they know’ whether it’s because of old misinformation from a job they did, a mate who ‘had cfs’ (but not severe) or even themselves needs to learn to respect this issue that they aren’t yet normally an expert in assuming what they think they know maps exactly the same to the person in front of them to the extent they don’t believe (or use different wording to cover that like ‘motivation’ or ‘if you tried’ ) ‘because their friend can still shower and doesn’t sleep in the day’


These things are subtle and without different severities, situations eg diversity checking fir these things that someone in a different situation mightnt spot ‘could be read as’ or ‘isn’t quite accurate for x people’ (so that line needs a caveat) it would be less than it could be

 

[bobbler]

In the treatment section could there be a way to convey and emphasise the point that although ME the condition itself has no validated treatment, that doesn’t equate to people with ME symptoms or diagnosis being untreatable patients.

That symptoms reported by people with ME are likely to go uninvestigated or under investigated over this leap from the patient having an untreatable condition and on to the patient being themselves untreatable.

That ME doesn’t amount to a protective mechanism against disease. That a patient having ME does make timely diagnosis of progressive disease more difficult.

Given that the known symptoms of ME are so numerous and may be so severe, descriptions of these may lead doctors to ignore the red flags for other disease.

It’s not yet possible to link symptoms of ME to ME in individual patients. There is a lack of any validation for specific biological abnormalities that might be found on available tests so as to rule in ME as cause. So it’s very important to be vigilant and rule out other causes that may well be treatable.

I read the other day of a woman who died of undiagnosed stomach cancer , likely undiagnosed because her stomach problems were attributed to severe ME.

I don’t know anyone with ME including myself who hasn’t had exhausting battles trying to get diagnosed with really common illnesses, on grounds that it would be ridiculous for me/us to think that we could possibly have another illness with similar symptoms to ME.

I think this is the main reason people with ME suffer. We are effectively barred from accessing healthcare even where our symptoms may warrant urgent investigation.

Important in general as a point that seems so obvious to us but has become a real hard but to crack (as a fallacy)