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

[Sasha]

Note:
The committee has made an announcement about the project discussed in this thread:
The Fact Sheet Project

Members can contribute by being part of the writing teams for two initial topics, and also by contributing information and opinions on the fact sheet development threads for each topic.
********







On the highly exciting thread, 'How can we improve the quality of ME/CFS research and clinical care?', one of the things that we've been discussing is the need for better information resources that are scientifically sound, and the possibility of S4ME building a team of expert patients, clinicians, researchers etc. to produce them here, inspired by @Nightsong and given a big thumbs-up by others:

We also have a situation where the resources that are available to patients are so very poor that using them will undermine their own position with their own doctors: if patients repeat the material put out by many ME organisations to their doctors they will just be assumed to be somatising. Better-quality materials that don't undermine the patients that try to use them would be a very good start.

Another case in point: the recent paper by those OTs. Very well meaning, all the right intentions - wrong, but not irremediably so. A few recommendations by a thoughtful group at the right stage could have made all the difference.

it would indeed be nice if the S4ME voice had some way of impacting the information stream - the educational side.

Just one project would be a good start. ME/CFS Skeptic has shown that it can be done and done very well. I would certainly support some webpages with educational material on them.

One of the things we could potentially do for fellow patients is publish info that equates to the information leaflets provided by the charities, possibly using the leaflets as a starting point. We take apart research papers, there's no reason we couldn't take apart current advice on living with ME/CFS, pacing, etc.

We've also talked about doing a proper hospital passport. I think there could be quite a few quick(ish) wins that would consist of short, but well-executed documents.

As a first step, I suggest that we think about what resources we would produce if the charities had never existed and there were no resources and we were starting from scratch, and make a list. Then we can look at what the charities have already done well, and what they have done badly, and what they haven't done at all, and set our priorities from there.

As we've discussed on the other thread, there are resource constraints and various practicalities to consider but I suggest that on this thread, we just try to build a priority list of resources.

 

[Sasha]

Just bagging this post in case it would be helpful later to collate a list of suggested resource from the thread and park it here at the top.

[Edit: Parking @Jonathan Edwards' priority list here, from downthread]



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)

 

[Peter T]

As I posted on another thread:

Am currently horizontal and also need to think about this, but I often think about the information I wish I had known about earlier in the course of ME, eg

• PEM
• Sensory hypersensitivities
• Orthostatic intolerances
• Potential food intolerances
• ?

essential to stress there are no evidenced based curative treatments and though the hopium pedlars will hate it, realistic information on prognosis, eg

• Full recovery the exception rather than the rule
• Improvement may be to a ceiling
• Improvement not guaranteed against future relapse
• Different courses of the condition

Obviously thought would be needed when this was considered relevant. Possibly only needs addressing at (six months? post onset), when a differential diagnosis between post viral fatigue and ME/CFS is more certain. Without this information pacing and activity management is an uphill struggle and many of us make bad decisions relating to life planning. However there is also no guarantee early on that new patients would be willing to accept this.

 

[EndME]

Most information resources for ME/CFS often seem to be partially sound before they start discussing things for which there is no evidence of efficacy, evidence of no efficacy or even plain pseudoscience.

It seems one regularly hears leading ME/CFS researchers making all sorts of claims that often even contradict the evidence (be it claims of efficacy of B-cell depleting medications for ME/CFS, the use of some supplement or the use of Lightening process etc). Should an information resource decicate some time to discuss these issues?

 

[Sasha]

Ideally, I think we'd have resources for:

• patients
• clinicians
• researchers
• funders and charities
• medical schools
• the NHS specialist centres

though some resources might serve several groups.

Here are some resources that I think we'd want patients to have:

• What is ME/CFS? (Symptoms, diagnosis, PEM is crucial?)
• Prognosis (including variation over time)
• Treatments (the fact that there are none, apart from for individual symptoms such as insomnia and headache)
• A warning about what to expect in NHS specialist ME/CFS clinics
• What PwME can do for themselves (pacing?)
• Treatments for which there is no good evidence (supplements, injections, etc.)
• How to think about anecdotes about cures/improvements
• A warning about the Lightning Process
• Orthostatic intolerance (including the controversy on mechanism/treatment)
• A warning about GET and CBT
• The current state of ME/CFS research (PwME need to know what a hole we're in)
• The current state of ME/CFS research funding (ditto)
• How to judiciously donate to and support research, given the limitations of our charities
• A warning about info from our charities
• How to talk to your doctor (about the science, so as not to be citing rubbish)
• A hospital 'passport' to explain what adjustments will make your trip survivable

I'm sure there are others. Add your own ideas!

 

[Eleanor]

Advice on applying for disability benefits, blue badge, work accommodations etc. How to convey the extent of your limitations with a fluctuating condition in language that a benefits assessor or HR person will understand.

 

[Haveyoutriedyoga]

I like using the as a - I want - so that structure when thinking up something new for myself or others because it helps me think it through, so…

As a: patient

I want: an overview of MECFS and how it affects people, for healthcare professionals who don’t specialise in it

So that: they take my medical/care needs and accessibility needs seriously, and meet them

In order for it to achieve the above, I think it needs to be succinct, factual (only), credible, in plain language. Could include a passport page for the patient to complete, could include suggestions and guidance for the patient who may not be familiar with requesting adjustments.

 

[Kitty]

Haven't the energy to write much today, but I'd say one of the more urgent requirements, from all perspectives, is information discussing the difference between PEM, fatigue and fatiguability.

 

[Fizzlou]

Additional resource ideas

• Why Chronic Fatigue. (Full stop) can be problematic- a lot of mild ME patients do use this as a coping mechanism. A lot of people with CF label think that they have been diagnosed with ME. Also it is a symptom of many issues.
  
• Differential diagnoses eg low ferritin which is a minefield of its own and a lot of symptoms mimic ME. Some sort of explainer of common overlaps that a patient can rule out.
• A good explanation of PEM for patients and medical professionals.
• A database of previous and ongoing research
• A database of conference talks
• A database of researchers and clinicians
• Easy to read summary from the NIH roadmap on the key areas with the above databases linked.

 

[Yann04]

Something for very severe ME is really important. Most resources produced by charities just don’t apply for us. They assume you have some mobility, have a doctor, can communicate your needs etc.

 

[Creekside]

What is ME/CFS? (Symptoms, diagnosis, PEM is crucial?)

While PEM is a good criterion for cohort selection, I think it's important to point out that it is possible to have ME without having PEM, and that the constellation of symptoms of PEM vary a lot, and can be triggered by physical or cognitive exertion or other stimuli. An ME diagnosis is a likelihood of having the disease, rather than a definite yes/no decision.

 

[Eleanor]

I like using the as a - I want - so that structure when thinking up something new for myself or others because it helps me think it through, so…

As a: patient

I want: an overview of MECFS and how it affects people, for healthcare professionals who don’t specialise in it

So that: they take my medical/care needs and accessibility needs seriously, and meet them

In order for it to achieve the above, I think it needs to be succinct, factual (only), credible, in plain language. Could include a passport page for the patient to complete, could include suggestions and guidance for the patient who may not be familiar with requesting adjustments.

This, and perhaps to address the elephant in the consulting room by including some information for HCPs who still take the psychological view of ME (because that's what they were taught years ago and they've never had occasion to update their knowledge). In as few bullet points as possible: how the psychological approach and GET have been shown to be ineffective and inappropriate; what the current recommendations are for management; where to find out more (eg the latest NICE Guidelines).

 

[EndME]

Additional resource ideas

• A database of previous and ongoing research
• A database of conference talks

Would one have to carefully consider the resources one provides? Would one run into problems when for example providing the above resources? Ultimately there are an abundance of conference talks as well as research that make all sorts of claims not based on any evidence. It might be confusing for many if one provides information that directly contradicts itself.

Regarding databases I think some of those already exist, for example CrunchME seems to have a database for most of those things https://crunchme.notion.site/homepage.

 

[Trish]

While PEM is a good criterion for cohort selection, I think it's important to point out that it is possible to have ME without having PEM, and that the constellation of symptoms of PEM vary a lot, and can be triggered by physical or cognitive exertion or other stimuli. An ME diagnosis is a likelihood of having the disease, rather than a definite yes/no decision.

I disagree. We're trying to get away from diagnostic criteria such as Fukuda and Oxford that don't require PEM.

 

[Sasha]

This, and perhaps to address the elephant in the consulting room by including some information for HCPs who still take the psychological view of ME (because that's what they were taught years ago and they've never had occasion to update their knowledge). In as few bullet points as possible: how the psychological approach and GET have been shown to be ineffective and inappropriate; what the current recommendations are for management; where to find out more (eg the latest NICE Guidelines).

I'd love to see this.

 

[Jonathan Edwards]

Here are some resources that I think we'd want patients to have:

That looks like a good list, but to me it would be a good list for all the audiences. I don't much need to have different resources for different groups. The basic educational messages are relevant for all of them.

 

[Sasha]

Additional resource ideas

• [...]
• A database of previous and ongoing research
• A database of conference talks
• A database of researchers and clinicians
• Easy to read summary from the NIH roadmap on the key areas with the above databases linked.

We have extremely limited resources in terms of time, people, and energy, and I'd rather see us use our expertise where we see expertise lacking, such as in producing science-based materials of our own. I don't see much benefit coming out of databases and they would take a huge amount of work to set up and maintain.

 

[Jonathan Edwards]

I agree. I don't think there is any point wasting energy on databases. Those resources exist for those that want them. The priority is to provide simple honest transparent information about major topics related to diagnosis, prognosis, lack of treatment and so on. Which currently does not exist.

 

[Sasha]

That looks like a good list, but to me it would be a good list for all the audiences. I don't much need to have different resources for different groups. The basic educational messages are relevant for all of them.

Maybe. I was wondering whether the NHS specialist clinics and/or medical schools (if we could ever reach them) would need different language, different formats (e.g. a talking-head video with a big medical expert such as your good self), and maybe deeper backgrounds to counteract the BPS teaching that they've been given. And also perhaps to address their roles: for example, BACME members may need to have it pointed out that they'll never know whether their patients have been hiding harms from them because of the massive imbalance of power inherent in the relationship and patients needing to please them in order to get benefits, sickness pensions, a good report to their GP, etc.

Or maybe not! I suppose we'll find out when we start writing.

 

[bobbler]

Something for very severe ME is really important. Most resources produced by charities just don’t apply for us. They assume you have some mobility, have a doctor, can communicate your needs etc.

are you aware of the 25% group - worth having a look at some of their sheets as a starting point?