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

That seems to be the consensus (as I said in my post to @Ash above, I didn't represent that consensus accurately in my summary!). I think we need a lead writer at this stage, though, so that they can start and run that thread - would you agree? And yes, I think self-nomination after the two weeks would be a good way to get a team.

 

Would a banner pointing people to the project be feasible?
I don’t know anyone who’s completely happy with existing options either because these don’t cover all requirements (too long and good or short but vague etc) so it seems like something people would like to hear about.

 

noise/sound exertion? along with talking exertion, cognitive exertion, orthostatic exertion and all the rest.

I know what you mean - I think there is the bit where you might be able to like it because you want to listen to eg a tune or tv or chat but it's still draining the eggtimer faster. And then add in multiple things at once. And noise obviously does this too. And hten there is when you need to be resting and it's still exertion but it hurts - and yet people don't seem to get that 4hrs of building banging takes so long for your body to calm down into rest from not due to 'it being in stress response' but because it needs to rest, but is so overtired (I think noise is as bad as anything else because it can be continuous without break) you need to rest to get good rest and it's more like a migraine combined with vertigo but also like the body has been exerted and needs to wind itself down except ours takes x times longer than most (again not because of the 'mode' and the 'HPA' thing certainly not in the simplistic way you see the BACME stuff)

Anyway, it's a hard one but getting those terms right would be such a winner.

 

A main difference as well could be that a patient who might think they might have it would perhaps be willing to put more effort in, particularly as it is for themself - and want detail/examples, where a busy professional just needs a direct 'what do you need from me' list (and you might be able to slide in the odd line of context/gist for penny-drop).

I like the acknowledgement that some of these might need to be really short, and when I think of the physiosforme document for 'non-ME/CFS physios who will be doing physio for something else such as an injury with pwme' ie the ones that are important really because there isn't a lot physios can do for ME/CFS and the ones who call themselves specialists generally aren't offering those correct things (like adjustments and helping with small things like pillow arrangement or whatnot but doing grading therapy).... well it's focus needed to be short. Certainly for the first version to make sure the penny-drop got across. In the context.

I think the important thing is that whilst the language and choices of what is and isn't included in detail in each and how prioritised different things are, well that these all are coherent with each other and the same underlying penny-drop paradigm comes through to the extent someone reading a few would put them together and get what ME/CFS is (and realise it isn't the old CFS 'fatigue' concept) - it's that jigsaw.

And the more we can nail some phrases that have been communication wicked problems with a few good terms or succint does what it says on the tin descriptors the better we can compete with what the bps does by literally often saying the same phrases over and over a la the rule of 7 times in advertising.

 

I think we should be writing different documents for different audiences. And bearing in mind context. Which is likely to mean very different lengths. That's what good content does. I do think we need some conceptual framework agreed in order that across all of whatever is produced it is all coherent. And ideally reiterating similar points and underlying ideas (in different ways with different bits emphasised) in order that should someone read a few they'll hopefully have reinforced (rather than contradicted) that same penny-drop of what the condition is.

 

I think we absolutely should be focusing on taking our time to discuss first and thereby get the approach right of what to leave in and out (vs audience attention span) and to smarten up words and terms for some of the tricky concepts we'll come across to communicate through brainstorming.

I think this absolutely needs to focus on taking time to do a good job and make sure the usp (unique selling point) of s4me are actually able to be employed (including those who are more severe being able to input across all documents, as well as those who might be carers, have busy jobs - we want people who match the context best to have a chance to input eg if it was on 'going to a physio with a bad foot' its useful to have those who've been there done that contextualising that for everyone at the start) and time is also important for that, over rushing to output something that doesn't do that.

I do understand the issue there is that someone might be able to put up their hand seeing the next x weeks ahead to 'manage' something, but longer time periods many of us can't see/commit. But those contributions and checks are valuable and even 2 weeks is a rush if it's not a good week, I know with things like the concept document etc. I get it will be relay on having diverse contributions and checks on each of them which will be different people, but I'd be interested to ask this question / keep a check to make sure it's consistently accessible from a diverse group (which might vary at different times)

So yes, it needs at least two weeks at the start. And on that basis whilst you may have more than one going on then this needs to extend in line with how many are in parallel to ensure participation isn't compromised in all these stages. But I agree with the pilot of one to see what we can learn from working it through to see what methods work well and people's experiences.

 

Can we have a glossary of words/terms for ME that the ME community prefers? I sometimes use terms like 'resting routine', 'managing the ME', and often wonder whether I should be using 'pacing' instead. I don't know if anyone has mentioned this yet.

 

Just adding my two cents into the alternate word for "sound and light sensitivities" - that being Cognitive Overload.

It was a few years a go (still is?) used in our clinical pathway for doctors to read on ME/CFS

To me, it sums up my cognitive problems and problems with working memory- put simply - there is only so many inputs you can have at one time. It doesn't just apply to ME, it can be any person with a medical problem. If I am medically unwell enough to need a hospital admission, having a noisy and brightly lit room makes it hard to concentrate and recall information for the staff, interact with staff and other patients and most particularly - difficult to rest and sleep.

Wrt hospital "passports" - I do agree with Jonathan but also to clarify, some hospitals, their wards are made up of single rooms for each patient (like my local hospital) but other older hospitals may not have that set-up. There is often good reasons why we cannot have a private room - a patient may be dying and having final visits from their family or the patient may need to be in a single room close to the nursing station so can be attended to very quickly. Or it may be for a patient who is very unwell and for a variety or reasons is distressing other patients and needs to be nursed away from other patients. Demanding one by presenting such a document may not go down well as you have not understood the demands for a single room.

I think there is some onus on ourselves to bring things that support our rest/sleep, if possible - or tell our assigned nurse to contact our support person to bring them to the hospital as soon as possible. (special pillows, eye masks, earplugs etc) That would not be an unreasonable request. It is also useful to have a list of medical diagnoses (and treatment you have had in the past) and medications you are currently taking - to take the load off one's memory.

 

5. What PwME can do for themselves (pacing?)

I'm flagging this but hoping it's just because we are only at the 'got to title it something stage' but I have a real issue with the term pacing in particular or in reccommending it. I'm hoping the 'concept' is OK underneath but I'm not loving the title as it is. I think it needs to somehow cover more. And can't be 'just pacing' - although boy can we leather that term and how misused and abused it us, and tell people to watch out for how the ambiguity is used to mislead people into other things (where they are increasing stuff or someone want to micromanage certain bits and pretend other exertions either don't exist or 'dont count'). To me pacing in laymans terms isn't even a management strategy that's any good, and no better or more used than someone having to do that one big thing at the start of the day then radical rest until they are recovered (and that's my problem with selling it).

At the end of the day it will need to be about 'reduction' in exertion (of all kinds), including cumulatively, and increase in proper good environment and rest, and no amount of spreading things out can make that compromise/sacrifice/the invidious choices involved suddenly be magically possible - even if some pwme do become astoundingly tenacious and efficient at using their precious energy to pull off an astounding amount with compared to others, including by cutting out things by having grocery deliveries and not wasting energy on x, y, z anymore.

And I'd like to think we'd step past the 'theoretical' that so many clinic type things seem to play about with as example calendars and into the 'reality' where that drill or alarm going off for an hour this morning just wiped out my day from 10am. And now as I need to be able to function on a telephone call at 2pm tomorrow I will have to be in bed until then (or when my body wakes up recovered and OK whichever comes first), skipping shower and everything, and hope I can function by then.

I also think it almost needs to be thinking about a companion if it is only going to be to the pwme, which is 'what those close to pwme need to understand', not to tell them to monitor that the pwme is 'behaving themselves' but so they know how to not undermine them and what that might mean eg 'if someone says to you I need you to cook dinner, turn the music off now, pick me up because I can't drive - then just do it and don't question or discuss it right now'. Or how yes you might all need to move home if that building work is going to be going on like that for long term and there's nowhere in the home it can be escaped from.

For a 'work version' it would be things like 'not only do the adjustments, but do them fast because if you dilly for six months leaving them eg on full time with that issue then by six months in they'll need that reduction to be to 2 days not 3-4 as they'll be iller'. And 'that's great you've given them somewhere to rest but be aware whether it is actually a long walk there and back making it moot on an energy front'. And to remember that any of these talks about 'how to help' or processes add more workload/energy expenditure on top of normal work often

Energy conservation and understanding the impact of exertion (of all kinds including eg noise) as general principles of 'what we have to do' I can sort of live with but in the making others aware that is the tyranny/job we are having to life our lives under - not a panacea, and certainly spreading things out isn't possible for many of us eg where you have a lot of medical appointments (wayyy above threshold) vs severe ME/CFS can be a common situation/even norm that many live under, where you are 'saving up for a shower once a week' then paying for it with PEM as an approach.

I think physiosforme did well on this, particularly remembering their early social media stuff where they 'got' that a lot of people were having to use 'radical rest' to 'do life' and cope with a world that didn't 'fit' the tiny units pacing would assume/those more severe have to play with. Medical appointment or important chore like showering = radical rest before, PEM after for many days (and then 'roll with it' on sleep reversal from the PEM) isn't just also valid but it's the only possible way for those who are having to roll the dice on 'making it happen' for things way beyond their threshold, and we should eb respected for the discipline and how much committment it took to get there (not the classic 'but you managed to travel to the appointment the other day')

On that basis I think selling the idea we can all 'pace' is an issue, and the difference between those who can and those who don't isn't expertise. I think the term pacing is far too simplistic of the life we have no choice but to lead to do our best to contain the harm.

I'd have a big worry if this section was too 'positive' rather than describing real life and including what we need others to understand and not be undermining. We need to get that the idea 'pacing is a management tool' is just another stick to beat those more ill or who are in PEM a lot with, and assume it is their fault for getting it.

From my experience too the most damaging thing was going over consistently 'a bit' (not necessarily into obvious PEM) then not getting the full break to fully rest off what had accumulated soon enough, with regard to long term deterioration that stuck. So I'd be as concerned to be describing that people need that 'catch up rest' as the 'ride the limits under PEM' idea - particularly given I see how people like PeteGladwell etc think and I genuinely believe he thinks that this 'pacing to behave right' and 'pretend function' is good and he's cracked that nut and yet that's what I spent decades being forced into and it's the worst thing, probably more damaging that an intense going over short-term where at least you know quickly it wasn't good and you need to treat it fully with rest and not to do it again.

 

I've just cross-posed on my issues with the term 'pacing' and indeed the suggestion of it. Mentioning that physiosforme seemed to really be getting it at some point a few years back when they picked up on radical rest, and eg how to deal with sleep reversal (from PEM or overdoing it) and whether to 'roll with it until it comes back round' as trying to manhandle it makes the ehxuastion and therefore the trying to control your sleep worse.

I'd also like to see us debunk the 'try not to sleep' nonsense as if meditation is somehow superior (tho the quiet room lying down is a yes, some need it) there's a lot of unproven and seemingly just values-based or myths-based stuff behind that sort of stuff. Or maybe it's because they are used to working with very mild or 'just CF or fatigued' people.

I think this terminology and bringing in that rest and lying down are actually important things (not 'prescribed' when you don't feel you need it and aren't more severe of course, but yes actually taking almost the video of Gerada at the point where she says 'and that's where you push through and get better' and putting a big meme or whatever it is called over and it and saying uhuh noise and replacing it with 'this is where you need to learn to listen to your body and if you've been CBTd either directly or without consent via it being embedded/ society then deprogramme those messages' and the same with the sleep thing, because if you push through rather than nap then my sleep is worse later because I'm too ehxuasted)

I'm not necessarily keen on the term 'routine' for anything, because of the fondness for micromanagement, behavioural and 'sleep hygiene' type stuff that goes on over here with certain persons trying to make those who are over-exerted by the world not being made for them to do things in the way they need to 'responsible for their own exhaustion'. ie instead of it being 'make sure you let them do their rest routine undisturbed so it's quiet and uninterrupted between 1-3pm' (at work, at home) it becomes 'have you been doing your routine properly' when you have a bad day.

I'm also very up for time really being spent within these documents nailing terms and words for some of these really important things that have been lumbered with less than appropriate ones, or don't have a succinct descriptor (because repeititon if we can nail some of these is a way for it to actually get taken in by people)

 

I don't think I'm the only one (?) who doesn't just 'like' something as a vote of agreement in general across s4me, I could disagree but find it an interesting point, or in particular something not being liked might just be because I hadn't processed it at the time, is a longer read etc and want to know to come back to it or not read it even if it's in the middle chronologically - so it mightn't be the best measure to use on its own vs eg polls and comments for some of decisions coming up. Having said that I do agree with Trish's post!

 

Agreed. It would be much more of a shame to eg rush the first stage then realise later on that eg a certain group of pwme hadn't been represented and had a point that turned the priorities on its head a bit of what was included or the focus/gist. SO maybe leaving room for those who see this but eg can't comment for x days to note their intention too ?

And I think we need to be open to the idea of some of these being somewhat a slower process where someone doesn't need to have some non-ME experience but is actually a compiler and curator - the most important starting point is what does and doesn't go in, and then within that using group-work to perfect some of the 'get the terms right' where some of these are wicked problems.

I don't see any issue with someone of these having an open finishing date other than the needs of the person who is leading on it and their exhaustion/committment level. And them going at a slower pace for more time for such stages if they are mid tackling something.

I'd like to think too we could be open to some being a relay race where there is enough notes at the start someone could pick it up if it becomes a lot for someone or they get a sudden illness or appointment and the project 'gist' could stay the same because the groundwork at the start shows where things have come from and thoughts etc.

We could have some topics that are as a final output going to be as short as the physiosforme one for physios in other areas who get a pwme coming to them for treatment for another issue but need to adjust for those additional limitations.

I don't see it as a major issue for in that instance it not almost offer line-by-line help on getting the wording itself right, but the decisions on content and focus and understanding the needs of the audience (and the needs of all the different pwme who might be affected by that situation) being primary in who might be great should they want to have a go.

What could be useful as things go on - and I'm not sure needs to be 'assigned' is to have some who maybe have more experience looking 'across' the literature and picking up where certain terms will be common and we can hopefully try and use them consistently, or checking for the jigsaw/coherence across these (so we don't have any inadvertent contradictions across them that aren't explained). But it could be 'asked for' at certain stages (and people who feel confident in that could respond if they can). And of course also knowing when a chunk can be just purloined to save reinventing a wheel, and to get things to stick by using the same words (and where we might want to marry with something some other org has written well elsewhere to get a term or description starting to be used across places) even if it might be cut or adapted slightly for context.

Heck someone leading it could have experience themselves but be too tired or buried in it to feel they can step back etc anyway..

 

Thanks @Sasha for getting the ball rolling on this and also for your summaries, very helpful to those of us unable to keep up. The summaries are pretty much all I've managed to read. From that my impression is that most of the discussion has been about what to produce as a priority, and how to go about the writing process (which in my experience is always much more difficult and consequently takes a lot longer than you think - not to put anyone off, just a little expectation management)

There seems to have been less discussion about how to achieve the widest possible reach for any resources produced. That could be at least as difficult as creating them in the first place. It's my sense that a lot of the charities don't like S4ME because we call into question some of their poorly evidenced but deeply held convictions about what ME is and how it should be treated; they'll likely continue to prefer doing their own thing. Those attitudes will be hard to shift

An additional challenge that may need to be addressed somehow in the materials is patient expectations. Many patients, especially new ones, refuse to believe that knowledge and treatment are as limited as they are. Understandable - it is an outrage - but unhelpful if they then specifically seek out information that gives the illusion of explanation and hope, and as we know there's plenty of that to be found, including from sources patients would reasonably expect to be authoritative

This makes it more difficult but also even more important that someone - and the S4ME community has the skills to be that someone - starts to put out more factual material, got to start somewhere and hope it gradually gains traction. In the short term though reception in some quarters is likely to be less than enthusiastic. There needs to be a strategy for getting the materials widely known and accepted as a reliable go-to resource

 

Don't know if this has been mentioned, but I'm wondering if there could be a document outlining the most promising research avenues that have significant barriers delaying them or preventing them from happening. Mainly thinking about the financial barrier to SequenceME, but also other research that requires very expensive equipment or very large populations. Maybe non-financial barriers as well.

Maybe a document explaining the value in pursuing these research avenues (feasibility, expected value of the findings, etc) could inspire interest that leads to donors or other support.

It could be more of a living document to change as new opportunities arise (and hopefully old ones get the support they need).

 

Practically everyone I’ve heard of from my generation, sick several decades, were told to either push on; do graded exercise therapy; avoid support groups or that their illness was psychological or some vague malady that was not properly managed. This isn’t ill luck , thousands would not be in the severe category if they hadn’t have gone through the NHS for their heaithcare ( the NHS being the primary drivers of this kind of dismissal, tough love approach). This applies to all the young women I've heard of in the UK who've died, we rarely examine how they became so severe in the first place. Add to that the failure , because of the nhs opting out of providing any specialist care, of management of aspects like orthostatic intolerance or pots , it not getting any appropriate diagnosis or management etc and I think that putting severe ME down largely to "bad luck" is completely inappropriate.

IMO This should be what the label Chronic Fatigue syndrome is used for. Chronic Fatigue syndrome was always the Umbrella that encapsulated people with a complex fatigue syndrome that may or may not include post exertional malaise. ME sat inside that umbrella, in the way that migraines with more specific requirements sits inside headaches. However then it became A Mantra that m.e has to equal CFS /be interchangeable with it and CFS now is being used to mean M.E & require pem too , which leaves surely, a lot of people homeless and saddles pwm,e still with an inappropriate name t.. i've also noticed people with long Covid who say they can't have m.e because they don't have post-exertional malaise and yet they would have , in my opinion , a bog standard Chronic Fatigue syndrome without Post exertional malaise.

 

Thanks, @Trish, that's entirely reasonable! I'll link upstream to your post.

Also entirely reasonable. I will hold my horses!

 

BTW, when I said I was holding my horses, I didn't mean that everyone else had to! Please do comment on priorities, process etc., especially if you haven't done so already...