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Open UK: Brighton and Sussex University Hospital and Medical School - Chronic Pain and Fatigue

Discussion in 'Recruitment into current ME/CFS research studies' started by RuthT, Sep 30, 2018.

  1. RuthT

    RuthT Senior Member (Voting Rights)

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    Here is new research by Brighton & Sussex University Hospital & Medical School. They are recruiting people
    for autonomic/inflammatory research arthritisresearchuk.org/research/grant… into mechanisms of chronic pain and fatigue.

    Looking for patients with #Fibromyalgia or #ME or both in south east England to take part.

    Have asked for details, interested & wary at the same time.

    Would be interested in any views eg @Jonathan Edwards

     
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  2. Andy

    Andy Committee Member & Outreach

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    Someone needs to have a word with Arthritis UK on how their researchers seem to feel OK with lumping ME patients into a study which is meant to be about Fibromyalgia.

    https://www.arthritisresearchuk.org...isms-of-pain-and-fatigue-in-fibromyalgia.aspx

    This is exactly the same pattern of behaviour (with no other evidence I'm assuming that the researchers believe that fibromyalgia=ME) that we've seen with other Arthritis UK research from Brighton & Sussex. Perhaps this is something that we should flag with Chris Ponting, becuase if they are likely to cloud any research in this way then it's something we can do well without.
     
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  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Agree it’s a concern if all lumped in together but if they keep as separate groups as a comparison isn’t that a good thing?.
     
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  4. Andy

    Andy Committee Member & Outreach

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    But there is no evidence that is what they are going to do. All the official "paperwork" that I've seen references fibromyalgia, then when it's being advertised to the patients it suddenly includes ME......
     
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  5. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Ah ok well yes they need to get that sorted.
     
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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The blurb gives pretty little idea of what the science is about. In general I am pretty sceptical about the idea of recruiting patients through adverts. The people who respond may be unrepresentative for all sorts of reasons, especially if the research centre has a reputation for being interested in certain connections to other conditions. There is then a real possibility that the patients will come out different from controls purely because of the biasing of the sample.

    We know that for ME there may be 10 times as many people who get that diagnosis as actually have ME according to strict criteria. For fibromyalgia I don;t think anybody really knows how many people are usefully given that diagnosis. I am not sure there are any criteria with anything like the credibility of those for ME.
     
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  7. RuthT

    RuthT Senior Member (Voting Rights)

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    Thank you all. Wise to be wary. Will keep you posted if I hear further.
     
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  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I asked them this before on Twitter. They said the ME patients are supposed to be controls, but I'm not sure. It's not a good idea, I'd imagine, to use patients you know very little about as a control to another set of patients you know very little about, but I could be missing something.
     
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  9. Andy

    Andy Committee Member & Outreach

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    You're right, that doesn't seem to make sense to me either.
     
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  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Good point which didn’t dawn on me :banghead:
     
  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    One other thing I'm remembering is that they were hoping to split patients by fatigue-primary and pain-primary symptoms, to see if that gave any differences (which is what the advert alludes to). That says to me that they see FM and ME patients as mostly interchangeable, but differing only in which symptoms are predominant.

    In general, I think there's too much messiness going on here. They need well defined patients in each cohort, and need to avoid mixing the two by using an arbitrary distinction.

    My gut tells me you'd first sift by clinical diagnosis, and then double check using a robust set of criteria to make sure patients weren't misdiagnosed. I would go further and use CPET to further confirm the two sets of patients.

    If any patients fulfil both FM and ME criteria, I'd exclude them from the study or be prepared to make a third trial cohort that looks at differences where both conditions are co-morbid (perhaps a needless complication which should really be a focus for a later trial).

    Then, only people who solely fit FM criteria would be in that arm, while those who solely fit ME criteria would be in the other, with as little chance as possible of contamination between the two arms.

    This mix 'n' match/pick 'n' mix approach doesn't bode well for me. It's like the PACE approach, where they advertised through FM groups to bulk out their numbers. We know it doesn't give reliable information.
     
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  12. Andy

    Andy Committee Member & Outreach

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    For what it's worth, I've reached out to someone who may be able to clarify these issues for us.
     
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  13. Trish

    Trish Moderator Staff Member

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    Concerns me that the ME group are being included to try to distinguish between patients with pain (FM) and fatigue (CFS). This suggests to me they don't understand what ME/CFS is. Unless they define it by PEM, and make that the distinguishing feature between the groups, I can't see what their point is.

    The blurb suggests the focus is on FM patients whose symptoms include fatigue as well as pain, and using CFS patients as 'just' suffering fatigue not pain. That is so wrong. Can anyone see anywhere what criteria they are using for ME?
     
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  14. Andy

    Andy Committee Member & Outreach

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    I can't access my records at home but I queried selection criteria for either this study, or another Arthritis UK study that seems very similar, and I was told something along the lines of "well defined, international standard definitions"....

    ETA Just to be clear, I took this answer to be an attempt to fob me off with as little information as possible.
     
    Last edited: Oct 1, 2018
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  15. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I can’t see them using anything stricter than Fukuda and their interest seems CFS or fatigue, rather than ME, although they probably don’t see any difference
     
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  16. Barry

    Barry Senior Member (Voting Rights)

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    How can you use a group of people as controls, when their own health condition is so poorly understood. Seems a contradiction.
     
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  17. RuthT

    RuthT Senior Member (Voting Rights)

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  18. Trish

    Trish Moderator Staff Member

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    Thanks for that link, @RuthT.

    The document is written for patients who are considering taking part and describes in some detail what will be done from the patient perspective - MRI scans, typhoid injection, tilt table test, blood tests etc.

    Provided they get well defined cohorts of FM, ME/CFS and control patients they might find something interesting that might be useful for future research. If the groups are ill defined and they don't use PEM as the ME/CFS criteria, I'm not sure what the point is.

    In a way I'm more concerned that they describe it as a study of pain and fatigue, rather than a study of FM and ME/CFS. Picking one symptom from each condition seems odd.
     
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  19. obeat

    obeat Senior Member (Voting Rights)

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    If your fatigue and pain levels are the same which cohort do you choose?! ME research is littered with studies with poorly defined cohorts, and advertising for participants is dubious. If this is the high quality research that the MRC wants to fund, I think they need to brush up on robust trial design. Just remembered that Stanford and Younger both advertise for participants,so I suppose it depends on the criteria used.
     
    Last edited: Oct 7, 2018
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  20. Trish

    Trish Moderator Staff Member

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    A discussion of another study of the neurophysiology of pain in ME and FM has been split off into a new thread here.
     
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