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

Yes but they are only UK.

 

Since there is nothing technical to say I don't see a need for different language.

 

This would be such a huge undertaking for this group of volunteers; defining the topics, drafting, reviewing, refining, approving then publishing it in an environment where it will inevitably conflict to some extent with existing messaging from the very many established charities & organisations. There is a risk of confusion & overwhelm for patients, carers & health care professionals.

I would like to pitch an alternative action; to engage in discussions with the existing charities, starting with one such as ME Action Network, to offer to review its materials & recommend improvements. If these are accepted then the revised documents could carry an “Approved by S4ME” marker. Then move onto another charity. Some may be glad to have the help; others may not but it seems a sensible & practical strategy to achieve the goal of improving the quality of information that is out there.

 

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.

I see no risk of confusion if we simply state things as they really are. Surely if patients are awash with disinformation the answer is to strip some of that away? I had forgotten just how bad the MEAction stuff is until just now having a look. It is make believe. Surely patients deserve to be told that?

 

Would it make sense for us to try a couple of pieces before deciding the best way forward with the entire project? Certainly we should come up with clear parameters as potentially this task could be infinite.

 

I second this idea. I live in the USA and I used a document from the Massachusetts ME/CFS & FM Association more than 25 years ago. It was invaluable. I was very naïve when it came to the legal process of obtaining disability benefits. I followed the document to the letter and I'm glad I did.

the document still exists. It's not gonna do much good for other countries that outside of the United States, but it's a good example. I noticed it was updated a few years ago and other than that I haven't read the document in over 25 years.

https://massmecfs.org/images/pdf/handbook/Disability_Handbook.pdf

 

Yes, the idea is to scope out what we might do in an ideal world and then chose a priority item and take a crack at it so that we can set up a way of working and see how we do.

 

Agreed. It would be really cool if volunteers who wanted to could be allowed to translate these resources to various languages.

(On an as wanted volunteer basis, this is too time intensive to make mandatory or part of a plan IMO)

 

This exists already, the guides from BenefitsandWork are amazing & the MEA guide to PIP is also excellent. But we could have a useful signposting document.

This would be brilliant.
Especially something with info about sensory "sensitivities" (hate that term!), to explain to such as ward sisters why a request for a side room isnt just people wanting extra gentle care but will result in faster discharge, and why exposure isnt the answer!

This. x 10,000!
And that PEM is not the same as 'feeling more tired after exercise', or DOMS.


The thing I personally feel most in need of & I'm sure I'm not the only one,is a decent short document I could hand over at a hopsital, either in an emergency situation or when being admitted for surgery.

The one recentlly produced by the charities leaves a great deal to be desired IMHO. I'm sure a lot of people worked hard on it, but I'd never give it to anyone as I know they'd either ignore it or take it straight back to the nurses station & all be rolling their eyes at the hypochondriac in bed 4 "FFS they want to try a night shift here, then they'd know what "fatigue" really was"...

But for anything to work I think it would need to have some kind of authoritative element - perhaps a signature by @Jonathan Edwards or some other suitable medic?

 

::breathing a huge sigh of relief::

For years I've been thinking this forum would be a goldmine of knowledge for putting something together that is much better than anything out there on ME/CFS but I just couldn't quite get my thoughts together and it seemed like such a big ask in a group where we're all so sick (and I already offer nothing in the way of help on anything here!). It's been like an itch that's just been needing scratched more and more as the years pass and now it finally has been! Thank you @Nightsong @Sasha et al.!

As a number of people have pointed out, there are some good resources here and there that we could curate. And I do wonder if one way to make this more manageable is to see if 1-3 people might take one topic and either curate good materials already out there or write up a brief synopsis on that topic. For especially large topics, we made need to break it down further (so, say, one person writes a paragraph or two on fatigue, another on fatiguability, another --or more than one--on PEM). I could volunteer to do something like that. It just needs to be something really small.

Many of the topics @Peter Trewhitt mentions are also things I wish I would have known when I first got sick, first and foremost being that I wish someone would have just been honest and explained that our current evidence suggests this a debilitating condition for which we have no treatments, little to no understanding of how it works, and that after a certain point, the chance of full recovery is very unlikely.

This would not be a priority but I really wish I would have had a better understanding of how to evaluate peer-reviewed research, what peer-reviewed papers can and cannot tell us, and the difference between clinical experience and reading stuff online when I was first starting out. There are good places for this online and at one point a few years ago I started trying to bookmark them. LOL but I have to remember where I bookmarked them and if they are still live! But this is one of those areas where I see patients--especially newly diagnosed patients--fall into all the sorts of traps I did back in the day. And I think we know plenty of medics who do too.

 

Agree with @Sasha and others above that throwing out all ideas and wishes rather than narrowing and limiting it to actual capacity is the way to go. So, l’d like everything please!



I love the method suggestion by @Haveyoutriedyoga

I agree with @Kitty that something on PEM & not PEM is urgent.

Also with @JemPD that something for hospital stays is urgent, especially given the stakes for the most severely affected.

Personally I’d really appreciate something for GPs that covers the landscape and also includes what Kitty mentions.

Also a very brief but firm outline of the difference between ME & CF for hospital outpatient appointments would really help me out.

 

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.

 

Huge thanks to all who started this discussion and added suggestions. Encouraging.

Not able to collaborate myself currently but just a thought -- [edit] for starting with #1 from Jonathan's list in the post immediately above:

I think the EMEC info and fact sheets on their website are the best we currently have.

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


(Apologies, not able to find forum threads on EMEC ATM)

 

Thanks, @Jonathan Edwards, fantastically helpful - can I just ask, is #7 on the list actually an accidental new line and should instead complete the sentence in #6?

 

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]

 

Yes sorry, I was meaning for having a start with #1 from that list

1. What is ME/CFS? (Symptoms, diagnosis)

Edit: Maybe the first document could include just a brief mention of the first couple of following items, and at a later stage references could be added to the other info?