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Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a two-phase community pilot study in the North East of England

Discussion in 'General ME/CFS News' started by John Mac, Sep 20, 2018.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    https://bmjopen.bmj.com/content/8/9/e020775
     
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    authors:
    1. Victoria Jane Strassheim1,
    2. Madison Sunnquist2,
    3. Leonard A Jason3,
    4. Julia L Newton4
     
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Were these home visits ?
    If you can' t get out of your bed/ house then I' m assuming that they were.

    If otherwise, it seems simply set up to fail.

    Or was proving how difficult things are basically the point?

    Edit - added last sentence
     
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  4. Andy

    Andy Committee Member & Outreach

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    Approximately 500 surveys sent in post, with about 70 responses, and 5 home visits.
     
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    I think the conclusion is that they have shown it is possible to engage with people with severe ME so they shouldn’t be excluded from being researched.
     
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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    This looks like a terrible return rate.
    However, there were 2 different cohorts:

    38 of these 58 people returned questionnaires, which is actually not bad (66%).

    425 questionnaire packs were sent out by ME North East, but only 25 were returned.
     
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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I found this a little interesting. Most studies don't give such information:
     
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The group that didn't satisfy either the Fukuda or the Canadian criteria were an odd group:
    I'm not sure how they managed to get into the study. Anyway, I don't think one can say from this that there are loads of people saying they have with severe ME who don't have it upon examination.
     
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I was a little frustrated when I first read about the response rate in phase 2. However, it was only the 4th visits that participant 1 and participant 3 missed. It looks quite likely that if the study went on longer they might have been able to be accommodated.


    figure 2.png


     
    Last edited: Oct 14, 2018
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  10. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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    I just read this study (a bit late!).
    I filled in the (massive) questionnaires for phase one, so met one of the researchers. She seemed great.

    I am pretty confused generally about papers like this, and why they seem pretty ok all the way through then switch on the BPS speak at the end. She references two such papers at the end, and one about mortality rates by Wessley himself! It may be that there are no others to reference, but it feels like a betrayal of trust, and that these researchers are disregarding our reality. Can’t they get published in the BMJ without saying the magic word “biopsychosocial”? Or do they really not understand the harms?

    I actually read this paper to see if it contained anything like this as I remember reading another paper (a lit review I think) by Strassheim which uncritically referred to the PACE trial.

    I would really like to see a bit of solidarity and obvious rejection of the BPS brigade from U.K. researchers. Referencing the BPS school only continues to bolster their careers and these things are counted in academic circles.

    The Newcastle team seem to be doing some great work, but this just puts me off.

    One of the references about MUS I can’t really understand but speaks about the MUS problem pointing to a need to move away from evidence based medicine as it’s clearly not working! There may be a finer point being made, but I couldn’t understand some of the terminology.

    Am I over reacting?!
     
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  11. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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    Yes I found this very strange. I think 6 gave another explanation for their symptoms (maybe they had being diagnosed as having CFS and that’s why they were captured?) and six had barely any symptoms at all, which is quite strange. I was glad the researchers didn’t speculate about why these people were claiming not only to have CFS but to be severely affected and practically housebound.
     
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  12. Trish

    Trish Moderator Staff Member

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    Thanks for your comments, @ProudActivist. I don't think I read more than the abstract when it came out. I've had a closer look now. I agree the last paragraph of the conclusion is odd.

    Specifically this sentence:
    I think they are saying people with ME whose ME is severe seem also to have lots of other co-morbidities, and somehow deducing that it is biopsychosocial factors that make them particularly susceptible to getting severe ME.

    On the surface that is logically true. There must be some factor that makes them susceptible to getting severe ME, and that factor could be
    - biological (like genetic predisposition, or some biological process gone more badly wrong),
    - psychological (like believing you have to exercise your way to health and crashing repeatedly as a result, and misreading body signals to stop)
    - social (like getting bad medical advice or lack of support).

    In that sense, the last sentence:
    could be interpreted as a benign desire to find out properly what can be done to prevent patients' ME reaching the severe and very severe stages. (like abandoning CBT/GET and giving patients adequate support).

    If that's what they mean, then it's fine, but it seems more likely that they are using the term in the BPS way we know and hate that is really a focus away from biological to psychological factors both in perpetuating the illness and in treatment strategies.
     
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  13. Trish

    Trish Moderator Staff Member

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    Can anyone point me to a copy of the Barthel Functional Outcome Measure?
     
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  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    And 'holistic' to me seems to mean much the same as 'biopsychosocial'.
     
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  15. Evergreen

    Evergreen Established Member (Voting Rights)

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    Overall, I'm glad that researchers are starting to look at severe and very severe ME. There's something a bit bull-in-a-china-shop about these early attempts.

    I have severe, not very severe, ME, and this would be astronomically beyond what I can do. It would completely rule me out of participating in the study, due to the extent of the exacerbation that would follow even one of these visits, never mind 4 in 3 months. It's clear they sought and got input from mild/moderate patients and a charity, but I'm not sure they've really grasped the severity. I do understand that some with severe and even very severe ME might be able for this, but I suspect that others are like me and couldn't dream of it.

    I share others' wonderings about the 12/56 who didn't fulfill criteria. I would have liked to hear more.

    It reminded me of question 10 of the MEA's 2010 survey, where 18/3594 people reported that they had none of what were judged (debatably, in my opinion) as the key features of ME by Dr Charles Shepherd, who wrote the discussion sections:

    Muscle Fatigue
    Cognitive Dysfunction
    Pain (esp in muscles & joints)
    Sleep Problems
    Mobility Problems

    I found the many grammatical and editing errors really off-putting in a journal article. There are so many in the first few paragraphs alone.

    I've read Victoria Strassheim's other papers and she does seem to be coming at this from the angle of severe and very severe ME being an avoidable aberration, i.e. very much informed by the deconditioning theory. She's not alone in this. My experiences with doctors would suggest that this is the mainstream view, and hers is at least more nuanced, with recognition of autonomic factors.

    I think we need health professionals to accept that ME has severe and very severe forms, just like other diseases/illnesses. One of the most distressing parts of deteriorating from mild to severe ME has been the increasing blame. To put it simply, when I was mild I got a lot of positive feedback from doctors about how good my attitude was, how proactive I was being, and now that I am severe I get the opposite. My attitude and approach have not changed, only my level of illness, but I am now a "bad" patient in their eyes. Reconditioning didn't work, so I'm bad.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My gut reaction is that you cannot tell the feasibility of doing research on people with severe ME unless you specify what sort of research it is going to be. If I had severe ME I would be very picky about what sort of researchers with what sorts of reasons I was prepared to let in my house.
     
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  17. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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  18. Trish

    Trish Moderator Staff Member

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    Thank you. I'm a bit confused about this. If this is the scale they are using then I can't make sense of this paragraph:
    The say 12 is the pivotal score at which you move from independence to dependence, but on that scale, just being able to eat without help and being doubly continent and able to use the loo would score you 40. And that's without being able to wash or dress or anything else.

    Can anyone else make sense of this?
     
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  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Independence on this scale, it should be noted, includes the use of aids. It's not true independence.
     
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  20. Daisybell

    Daisybell Moderator Staff Member

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    @Trish I think they must be using the modernized Barthel - where the scoring is changed to 0-20. So unable to do something scores 0, needing assistance scores 1, and independence scores 2. I’m fairly certain this was designed for stroke, so I don’t personally think it’s a good tool for ME. It is a pretty crude measure even for stroke....
     

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