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UK: Priority Setting Partnership for ME/CFS

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Mar 10, 2020.

  1. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Officially yes, but your ideas for research, could be shared on the forum and might be submitted by others.
     
  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    Perhaps we should start a dedicated thread for ideas?
     
  3. Andy

    Andy Committee Member

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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    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.
     
  5. Andy

    Andy Committee Member

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  6. Andy

    Andy Committee Member

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  7. Trish

    Trish Moderator Staff Member

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    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.

     
    Last edited: May 17, 2021
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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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
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    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:

    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.
     
    Snow Leopard and petrichor like this.
  10. Trish

    Trish Moderator Staff Member

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    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.
     
    cfsandmore, geminiqry, Yvonne and 9 others like this.
  11. Andy

    Andy Committee Member

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    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.
     
  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    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.
     

    Attached Files:

    MSEsperanza, Colette, ukxmrv and 10 others like this.
  13. Andy

    Andy Committee Member

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    Hi @Amw66 , any chance of an update on progress?
     
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  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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    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.
     
  15. Trish

    Trish Moderator Staff Member

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    A reminder that this phase closes on 5th July and we can submit more than once if we think of more suggestions.
     
  16. Hutan

    Hutan Moderator Staff Member

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    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.
     
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    Will update from laptop in morning . Phone is too easy to mistype.
     
    Invisible Woman, Andy and Hutan like this.
  18. Hutan

    Hutan Moderator Staff Member

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    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
     
  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    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
     
    Last edited: Jun 8, 2021
  20. Andy

    Andy Committee Member

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    Great, thank you @Amw66 :thumbup:
     

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