UK: Priority Setting Partnership for ME/CFS

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.

 

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

 

This one also seems key to me.

 

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,

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?

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?".

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

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

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

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.

 

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'.

 

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.

 

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.

 

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.

 

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)

 

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.

 

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.

 

@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.