UK: Priority Setting Partnership for ME/CFS

[Trish]

Thanks @Andy, that's helpful. Are the numbers on the survey itself the same as on the long list? If so, I think I would find it more helpful to stick to the long list numbering in our discussion.

 

[Andy]

Are the numbers on the survey itself the same as on the long list? If so, I think I would find it more helpful to stick to the long list numbering in our discussion.

Please note that the original numbering of the questions is different to that in the original long list.

Admittedly I added that in as an edit after posting.

The re-numbering took place as part of the copy and paste process for some technical 'auto-magical' reason, and I'm afraid I hoped that people could work around it rather than me go through and re-re-number them all.

 

[Trish]

OK, thanks for clarifying, Andy.

 

[Andy]

OK, thanks for clarifying, Andy.

Just went through and re-re-numbered them, they should match now.

 

[Trish]

Thanks, Andy.

 

[Trish]

A reminder that those of us who are in the UK have until 13th December to choose our top 10 priorities for research. The details are further back in this thread here:
https://www.s4me.info/threads/uk-priority-setting-partnership-for-me-cfs.13973/page-6#post-384662

I hope we can get some discussion going here about our preferred priorities and why. It's a bit overwhelming at the moment just reading through the list, but definitely worth putting the effort in, I think.

 

[Trish]

I have just done a quick read through of the long list and picked out these as the ones that immediately struck me as worth doing, but lots of others are equally worthwhile. Or could be equally a waste of money in the wrong hands.

I would be interested to see other people's lists of possibles, and final ten selected.
Thanks @Andy for the list in posts starting here that I copied from.


8. What causes ME/CFS to become severe?

10. How can an accurate and reliable diagnostic test be developed for ME/CFS?

19. What causes people with ME/CFS to relapse and their symptoms to get worse? Are there ways to prevent or minimise relapses?

22. Are there long-term effects of repeated post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed)?

24. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?

28. Is there a way for people with ME/CFS to monitor and manage their activities (such as using a heart rate monitor) to avoid triggering post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed)?

29. Are there ways to objectively measure how severely someone is affected by ME/CFS and whether their symptom levels are changing over time?

30. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?

32. How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?

34. What happens to muscle function in people with ME/CFS?

40. What would be the make-up of a high-quality specialist service for people with ME/CFS? Would this improve the treatment and care of people with ME/CFS?

43. Based on people’s experiences, what does ongoing monitoring and care for people with ME/CFS need to include?

44. What causes sensory problems in people with ME/CFS (such as sensitivity to light, noise, smell and touch)? How are these best managed and treated?

45. What causes orthostatic intolerance (e.g. feeling dizzy or unwell on standing or sitting up) or problems controlling body temperature? How are these best managed and treated?

48. What causes sleep problems and sleep pattern changes in people with ME/CFS? How are these best managed and treated?

53. What causes pain in people with ME/CFS? How is this best treated and managed?

54. What causes brain fog in people with ME/CFS? How is this best treated and managed?

55.What are the impacts of ME/CFS on people’s quality of life, including work, finances and family and social life? What practical support would be most effective, particularly in terms of social care and welfare benefits?

57. What harms do people with ME/CFS experience as a result of the lack of professional recognition and stigma from the condition? How can these best be addressed?

 

[MEMarge]

41. Why don’t some health professionals accept ME/CFS is a serious illness? What would help them to recognise and respond appropriately to people’s symptoms?

This one also seems key to me.

 

[Andy]

While I do think this project is a worthwhile one, I'm finding the list of questions a slog to get through, and I think some definitely need trimming or splitting into multiple questions. A quick selection of a couple of questions to highlight what I mean,

Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?

Multiple questions. The critical one, to my mind, is the first. Why pad it out with the other two questions, which would naturally follow on from answering the first?

Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?

As above. Only the first question is needed. And the second question is confusing. Is it "Is there a link between why do some people develop ME/CFS following an infection and long-COVID?", or "Is there a link between ME/CFS and long-COVID?".

How can the current approach to diagnosing ME/CFS be improved, to reduce delays and include other conditions commonly linked to ME/CFS, such as Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos syndromes (EDS) and Mast Cell Activation Syndrome (MCAS)?

Way too wordy. Why isn't it just "How can the current approach to diagnosing ME/CFS be improve?".

Which conditions are commonly linked with ME/CFS, such as Ehlers-Danlos syndromes (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), gut disorders and Mast Cell Activation Syndrome (MCAS)? Do they have the same root cause or does one cause the other?

Again, why is this not simply "Which conditions are commonly linked with ME/CFS?"

What are the impacts of ME/CFS on people’s quality of life, including work, finances and family and social life? What practical support would be most effective, particularly in terms of social care and welfare benefits?

And the second part of this question is included as part of the question below.

What practical and emotional support do carers/ parents of people with ME/CFS need and how can these needs be met?

I don't know why practical support needed to be in the same question as emotional support.

I also feel that the design of the website wasn't the best, with the survey, which is scrollable up and down, being contained within a window on page of the site, which itself can be scrolled up and down. Until I figured this out, it confused me as to why I didn't seem to be seeing all the information that I expected.

 

[Trish]

I agree some of the questions contain rather a lot of parts. I think this was probably done in an effort to be inclusive of as many issues as possible raised in the first phase survey. It must have been an impossible marathon task to whittle down thousands of suggestions into sensible categories and to try to include recurring topics in some way without making the list for this round too long.

I am tending just to look at the key phrase in some of the longer topics, and ignore the other bits.

 

[Milo]

Again, why is this not simply "Which conditions are commonly linked with ME/CFS?"

The issue here would be that it could be interpreted as FND, depression, anxiety, somatization as the commonly linked conditions- which would definitely be unintended.

 

[Andy]

The issue here would be that it could be interpreted as FND, depression, anxiety, somatization as the commonly linked conditions- which would definitely be unintended.

But surely the intent isn't to limit the question to solely EDS, POTS, gut disorders and MCAS? So there is nothing to stop your suggested possible interpretation anyway.

Thinking further on the question, I wonder what is meant by "commonly linked". I suspect what is meant is something like "what conditions are often present alongside ME", which could potentially prove a useful question to ask patients, however it could be interpreted as "what conditions are linked to ME by medical professionals", which would simply get us a list of all the ways that ME can be psychologised by 'experts'.

 

[Andy]

I thought it might be useful to highlight how the survey works, as it might well be daunting to think of working through all 59 questions.

The main part of the survey is two part. You start with the long list and can select whichever questions you consider to be important. The next stage then presents a list of all those questions you selected so that you can then select the ten that you consider most important - this obviously means that you will have a shorter list to deal with the second time around.

 

[Jonathan Edwards]

The issue here would be that it could be interpreted as FND, depression, anxiety, somatization as the commonly linked conditions- which would definitely be unintended.

Why would these be any less valid than 'EDS', 'MCAS' etc.?

From my perspective the important thing for all these conditions is to get robust evidence for no association - which I suspect is the reality. It may be easier to do that for EDS. Both things like depression and 'MCAS' are so poorly defined that it is less easy to prove.

 

[Milo]

Why would these be any less valid than 'EDS', 'MCAS' etc.?

i think that in general, due to our history as a disease to be gaslit by the BPS lobby, anxiety, depression, and somatization are labels that have been used liberally by the doctors. I would suspect that these diagnosis and worse one live in patient’s records because of the doctor’s erroneous opinion.

i have heard so many times of newly diagnosed patients being told they are depressed or anxious and need to pop the anti-depressants or anxiolytics when in fact these patients need to be heard and acknowledged for what they are going through. I witness the same thing happening with the Long Covid patients, when the doctors have no clue what POTS is and why their patient’s standing heart rate is 145.

Now I totally agree with you that EDS and MCAS are from the best of my knowledge tricky to diagnose properly and those who have receive these diagnosis are also in the grey zone. Maybe i am wrong on that.

Now, if these questions get asked at the research level, i would suggest that 3 different doctors (from different programs) examine throughly these patients and should write/investigate the diagnosis effectively to a solid confirmation.

it reminds me of the NIH study, where several ME experts certified the patients accepted in their study were ME patients. That didn’t goo well. 37% of the patients were not eligible because they had other diagnosis such as cancer, myositis, and MS amongst others that rendered them ineligible for the study.

What i would actually want to know is whether patients are screened for history of concussion, traumatic brain injury, and use of fluoroquinones any time before disease onset.

 

[Amw66]

Update on reponsses for week 3

total respondents to date = 1182
of these

83% are pwME

12% are carers/ family/ supporters of pwME

3% health professionals

1% other


of those with ME who responded

12% classed themselves as mildly affected

48% classed themselves as moderately affected

35% classed themsleves as severely affected

3% classed themselves as very severely affected

1% classed themsleves as being in remission


Length of illness from respondents

<1year = 2%
1-5 years = 21%
5-20 years = 47%
20+ years = 30%

There is a big issue with representation from BAME as 95% of respondents are classed as white- if anyone has ideas as to how this group can be reached please post suggestions ( i have contacted a friend from uni and she is putting a poster in her mosque - I have local GP surgeries supplied with posters/ info)

 

[Milo]

There is a big issue with representation from BAME as 95% of respondents are classed as white

I believe poor ethnic representation is a problem that occurs in several countries including North America and Europe. It is always good to bring it up because we do know that ME does not discriminate according to the color of your skin or socio-economic class for that matter.

It is interesting to me that there is very low representation of the under 5 years sick compared to the 5 years and over which accounts the more experienced patient at a 3:1 ratio, perhaps validating that it takes an enormous time to simply get diagnosed.

 

[Keela Too]

Just filled in my responses this morning.

In some ways knowing that LOTS of people are filling this in makes it easier, because if I have had an over-sight and ignored a valuable question, it is likely that others have picked it up and included it.

 

[Amw66]

@Wilhelmina Jenkins - do you have any suggestions on ow to reach ethnic communities to enable engagement?

I have managed to get a friend to translate into Urdhu and Arabic so that general posters can be displayed within commnities and places of worship, and they will use their family networks to promote throughout UK, but this is a structural issue and any heads up on what has proved effective eslewhere would be useful.

I don't have Mandarin/ Korean/ African languages knowledge nor contacts so a bit limited.

 

[Trish]

What does the James Lind Alliance do about translating its patient surveys to cover major ethnic groups in the UK? Surely that should be part of their remit, as well as seeing that the surveys are circulated to clinics for the relevant condition being researched.