UK: Priority Setting Partnership for ME/CFS

The survey has been open for two weeks now- I have checked with JLA and have been advised that it's OK to let you know re progress - this can help to make sure that it's as broadly represented as possible.
I'm also a member of the steering committee in a carer role.

There have been a total of 419 surveys completed and submitted.
Of these 363 have been submitted by those with ME, and of these 363, 145 were by those who are severe and 18 very severe. 25% group is playing a vital role in offering those who are severe and very severe an abillity to respond via text or phone

Social media seems to be playing a large role in providing awareness and links to the survey, so for all who have contributed and shared , thank you.
 
I have just watched the video. A very impressive and knowledgable group of members of the PSP steering group. Thanks to all of them for taking part and for their work on this.

It reminded me to get on and have a first go at filling in the questionnaire. Apologies to them for my rather lengthy questions. I focused on 4 main areas:
- putting a stop to funding BPS research
- the medical and care needs of pwME, especially severe and very severe
- medical education
- getting more funding for biomedical research, both lab studies and clinical trials of drugs for ME itself and for symptomatic treatment.

Edit: I'll add a copy to this post of what I said as an aid to me if I decide to submit more later.

How can we stop funders wasting limited ME research funds on psychosocial treatments such as CBT, GET and ACT?
These treatments have been proven not to work, and the researchers involved have proved themselves unwilling and unable to accept this, or to carry out high quality research. Now that NICE has acknowledged that none of this research is of acceptable quality, and that despite the best efforts of the researchers to substantiate their model, it has proved false, how can funders be told to stop funding any more research into CBT/GET and any other psychological or behavioural therapy for ME/CFS. Existing studies should be defunded and the researchers involved precluded from any further ME/CFS studies. (eg Crawley, Loades, Chalder and Moss-Morris)
As an adjunct to this, how can these same researchers be stopped from doing scientifically illiterate studies of alleged psychological factors that are purported to attribute the cause or perpetuation of ME/CFS to psychological factors such as perfectionism or catastrophising. None have shown any valid links, and they should be stopped.
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What are the medical and care needs of people with ME/CFS, particularly those severely and very severely affected? Are they being currently met? How can the NHS make better provision for the medical and care needs of people with ME/CFS. Is the new NICE guideline being implemented adequately to meet these medical care needs? Are clinical commissioning groups implementing the medical and care needs of people with ME/CFS in their area? Are they monitoring this adequately, including ensuring appropriate training of clinicians and carers, and provision of appropriate housing and access to medical and hospital facilities and personal care.
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How can appropriate medical education about ME/CFS for all doctors and allied health professionals be produced and implemented? How is re-education, or if necessary redeployment to other areas, of current providers being provided and assessed?
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How can the MRC be persuaded to take ME/CFS seriously with a level of funding for ME/CFS relative to other diseases commensurate with the disease burden? How can fundamental biomedical research on ME/CFS build on the good start with DecodeME, be accelerated quickly? How can clinical trials of existing drugs that are showing some effects for some people with ME/CFS be funded and implemented? For example low dose Naltrexone, antivirals and antiretrovirals, and low dose Abilify. And how can [edit: I should have said 'trials of'] existing drugs used for symptomatic treatment in other diseases, such as for sleep, pain and orthostatic intolerance, be funded for ME/CFS?
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Excellent questions @Trish as I'd expect.

The steering group will be getting our first feedback re the questions being asked in early June.

Please do promote this to any ME groups you belong to, and on Facebook, Twitter etc so that we can get some good ideas and a clear sense of what is urgently needed

There is some useful info and graphics on the website.
https://www.psp-me.co.uk/

Any questions, do ask
 
Hope it's okay to give some 'too late' criticism of your submitted comments Trish, but I still don't know how to address problems with the way funding has been directed to poor quality researchers, and any discussion could be a good thing for thinking things through:

How can we stop funders wasting limited ME research funds on psychosocial treatments such as CBT, GET and ACT?
These treatments have been proven not to work, and the researchers involved have proved themselves unwilling and unable to accept this, or to carry out high quality research. Now that NICE has acknowledged that none of this research is of acceptable quality, and that despite the best efforts of the researchers to substantiate their model, it has proved false, how can funders be told to stop funding any more research into CBT/GET and any other psychological or behavioural therapy for ME/CFS. Existing studies should be defunded and the researchers involved precluded from any further ME/CFS studies. (eg Crawley, Loades, Chalder and Moss-Morris)
As an adjunct to this, how can these same researchers be stopped from doing scientifically illiterate studies of alleged psychological factors that are purported to attribute the cause or perpetuation of ME/CFS to psychological factors such as perfectionism or catastrophising. None have shown any valid links, and they should be stopped.
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I thought some of this was too forthright.

I don't think that we can say that the treatments have been "proven not to work" at the moment. Also, did NICE provide a quote like this?: "NICE has acknowledged that none of this research is of acceptable quality". I thought that the reviews assessed evidence for efficacy as low quality, but that's different to saying that the research is not of acceptable quality.

It's hard to make strong positive claims about anything much to do with ME/CFS, so I think it's best to avoid that approach. I reckon that the problem is more that things are a huge mess and that this is substantially the result of the failings of particular people and institutions, rather than that things have been proven not to work but some people won't accept that.
 
I understand your point @Esther12 and it's fine to criticise my comments.

I deliberately made the case as strongly as I could on this. Don't forget I am addressing these comments to the steering group and James Lind staff, not, at this stage to the funding agencies.

I wanted to emphasise strongly that there has been a gross misuse of government funds on ME research that, by design, was never going to provide useable information. There is something very wrong with the vetting system for deciding on funding that they are still giving millions for unblinded trials with subjective primary outcomes.

And the same departments are churning out PhD students who do unacceptably poor quality questionnaire based research where they cherry pick data with weak associations between ME and psychological characteristics, and wrongly interpret this as causation.

We won't really move forward until all that poor research stops.
 
From the PSP website,

On the PSP process,
"You tell us the questions you think research should answer
We ask you - people with ME/CFS, carers and healthcare professionals - to tell us the questions that you think research should answer. This will be through an online or paper based survey. You don’t have to know whether research has already answered your questions – that is something we'll work out.

Data processing
We collect all the questions and sort them into themes. We'll also look to see whether any of the questions have been answered by research already and if so, we'll remove them from our list.

First round of priority setting
We ask you - people with ME/CFS, carers and healthcare professionals - to look at the long list of questions and to prioritise them. The Steering Group will decide how best to do this beforehand, once they know how many questions there are.

Final round of priority setting
We hold at least one workshop where some people with ME/CFS, carers and healthcare professionals look at the top 25 or 30 questions and work together to agree on the final priority order. If needed, we might hold more than one workshop, but the Steering Group won’t know whether this is a good idea until they see the themes in the questions in the previous stage."

And on submissions,
"Do I have to write a research question?

No. The most important thing is to draw on your own personal or professional experience of ME/CFS. Write as much or as little as you like. It is enough to write a short sentence about something that is important to you."


So from that information, you do not need to worry about the accuracy of any statement that you make, so long as your submission is about something that is important to you as a pwME.
 
Update in survey progress up to the end of week 4.
Survey completions 680
Of which 227 class themselves as severe, and 29 as very severe - i find this heartening as these are groups who are so often left out.

  • 44% of responses relate to having had ME/CFS for between 5-20 years
  • Over 60% respondants are aged between 35-74
  • 44 responses from clinicians (with a wide range - dentist/ A&E/ OT/ holistic life coach/student/GP/nutrition nurse/social worker)- note that some of the clinicians also have ME.

If you have done the survey, (or not) there are ready made graphics and letter templates to widen awareness and participation which can be found here

Spread the word - ME/CFS Priority Setting Partnership (psp-me.co.uk)

examples attached below -it would be great to keep momentum going.

A lot of responses have come in via social media ( some via S4ME) - it would be good use the Wednesday ME Awareness format in social media to give it a boost after last week's ME Awareness week - I can appreciate that many may be resting up after last week though.
 

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Amw66 said:
Update in survey progress up to the end of week 4.
Survey completions 680
Of which 227 class themselves as severe, and 29 as very severe - i find this heartening as these are groups who are so often left out.

  • 44% of responses relate to having had ME/CFS for between 5-20 years
  • Over 60% respondants are aged between 35-74
  • 44 responses from clinicians (with a wide range - dentist/ A&E/ OT/ holistic life coach/student/GP/nutrition nurse/social worker)- note that some of the clinicians also have ME.

If you have done the survey, (or not) there are ready made graphics and letter templates to widen awareness and participation which can be found here

Spread the word - ME/CFS Priority Setting Partnership (psp-me.co.uk)

examples attached below -it would be great to keep momentum going.

A lot of responses have come in via social media ( some via S4ME) - it would be good use the Wednesday ME Awareness format in social media to give it a boost after last week's ME Awareness week - I can appreciate that many may be resting up after last week though.
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Hi @Amw66 , any chance of an update on progress?
 
Next step is that the Information Analyst groups similar questions together.

This will be done in conjunction with a sub-group of us, comprising a mix of the organisation reps, people with ME, carers and clinicians. This will probably take till the end of July, but we'll be starting next week.

All the original questions will be retained.

The phase after that will be checking which research questions have been answered to a high standard of evidence.

This will be starting around the time that the NICE GDL are published.
 
One research question that is worth considering is trials of drugs prescribed for POTS in ME/CFS cohorts. These drugs are widely prescribed for people with ME/CFS, but we don't know if they work. If they do, then some solid trials would help more people benefit from them. If they don't, then money can be saved and unnecessary side effects avoided. Small, well-conducted trials can be easily done, and, regardless of the finding, there's an immediate win.
 
Another research area that we need work on is the paired CPET studies.

  • More replication from independent researchers would be good - more paired CPETs in ME/CFS vs really well matched healthy controls - so even match the activity levels as measured with monitors over several months
  • Are they replicable at the individual level - as in, if a person performs worse on a second CPET one time, are they guaranteed to replicate that response another time? If a person performs worse on a second CPET, does their performance deteriorate further if another paired CPET test is done in a few days time?
  • And how useful are paired CPETs for separating out people with ME/CFS from people without ME/CFS? Again this would require monitoring people over months to be sure there was a pattern of PEM so the ME/CFS diagnosis is solid, and comparing with people with non-ME/CFS fatigue
 
Responses up to 6th June 2020 - summary
Total 831 responses
of which

711 are those diagnosed with ME at any time aged 16 or older
138 are carers/ family
53 are health care professionals who work with PwME
10 are other ( people without formal diagnosis, advocate, student, politically interested person...)

illness severity of respondants
Mild 106
Moderate 354
Severe 283
Very Severe 34
In remission 15

Length of illness
up to 1 year 9
between 1-5 years 179
between 5-20 years 354
over 20 years 247

Age
under 16 13
16-24 71
25-34 107
35-44 169
45-54 173
55-64 158
65-74 94
75-84 7
85+ 0
prefer not to say 2


country of residence
England 647
Northern Ireland 20
Scotland 85
Wales 17
Other 52
(other Scandinavia, Australia, New Zealand, Belgium, Netherlands, USA, Germany, France, Spain, Isle of Man and ex pats

Gender
male 118
Female 682
Prefer my own term 13
Prefer not to say 7

Ethnicity
White 774
Mixed/ multiple ethnic groups 14
Asian/ Asian British 8
Black/ African/ Caribbean/Black British 5
other ethnic group 7
prefer not to say 14

Main means of accessing survey remain - social media/ charity webpages/ charity newsletters

This is a good response level for JLA. It's quality not quantity that matters - this level of response will generate more than 2000 questions - it may be that a single one will be of more significance than a number that are the same, but all are retained and could be used for other purposes - eg campaigns ( ethnic response rate an obvious one from returns)

All data is retained and we have been advised will be made publically available.

eta I did space the original post better but in posting it has lost the formatting - apologies as it is difficult to read the numbers
 
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Amw66 said:
Responses up to 6th June 2020 - summary
Total 831 responses
of which

711 are those diagnosed with ME at any time aged 16 or older
138 are carers/ family
53 are health care professionals who work with PwME
10 are other ( people without formal diagnosis, advocate, student, politically interested person...)

illness severity of respondants
Mild 106
Moderate 354
Severe 283
Very Severe 34
In remission 15

Length of illness
up to 1 year 9
between 1-5 years 179
between 5-20 years 354
over 20 years 247

Age
under 16 13
16-24 71
25-34 107
35-44 169
45-54 173
55-64 158
65-74 94
75-84 7
85+ 0
prefer not to say 2


country of residence
England 647
Northern Ireland 20
Scotland 85
Wales 17
Other 52
(other Scandinavia, Australia, New Zealand, Belgium, Netherlands, USA, Germany, France, Spain, Isle of Man and ex pats

Gender
male 118
Female 682
Prefer my own term 13
Prefer not to say 7

Ethnicity
White 774
Mixed/ multiple ethnic groups 14
Asian/ Asian British 8
Black/ African/ Caribbean/Black British 5
other ethnic group 7
prefer not to say 14

Main means of accessing survey remain - social media/ charity webpages/ charity newsletters

This is a good response level for JLA. It's quality not quantity that matters - this level of response will generate more than 2000 questions - it may be that a single one will be of more significance than a number that are the same, but all are retained and could be used for other purposes - eg campaigns ( ethnic response rate an obvious one from returns)

All data is retained and we have been advised will be made publically available.

eta I did space the original post better but in posting it has lost the formatting - apologies as it is difficult to read the numbers
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Great, thank you @Amw66 :thumbup:
 
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