1. The latest 'News In Brief' post for w/c 5th Nov can be read here, Guest.
    Dismiss Notice

School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2018, Friedman et al

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Sep 29, 2018.

  1. Andy

    Andy Committee Member

    Messages:
    4,075
    Likes Received:
    30,267
    Location:
    Hampshire, UK
    Does this count as "good" psychosocial research, as in, in terms of where to put it on the forum?
    Paywalled at http://journals.sagepub.com/doi/abs/10.1177/1942602X18795299?journalCode=nasb
     
    MEMarge, WillowJ, Hutan and 7 others like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    1,293
    Likes Received:
    14,620
    Location:
    Norway
    Good question!

    I thought there was relevant and useful info here. Nice to see Unrest mentioned as source of information.
    I'm sceptical on how they present correct management of ME as a road to recovery. It might lead to improvement, but it's not given, so might create expectations the patients have no chance to fulfil.
     
    MEMarge, lafarfelue, Hutan and 4 others like this.
  3. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    3,182
    Likes Received:
    21,043
  4. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    3,182
    Likes Received:
    21,043
    Given the following slant of this paper, I would say 'good'. Not read it all, so may be some glitches, but nothing is perfect.
    [my bold]

    ETA: The PACE author's etc would correctly argue they never dispute there is a physiological problem (i.e. deconditioning), the but the above is still correct in that Sharpe et al falsely believe there is no physiological condition that cannot be fixed by their proposed behavioural changes.
     
    Last edited: Sep 29, 2018
    MEMarge, Andy and Trish like this.
  5. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    110
    Likes Received:
    649
    I feel the paper tries to do several things - talk about nurses helping direct one to an early diagnosis and longer term support.
    But to me it feels vague overall and the text seems sparse re onset of cognitive issues as an indicator of ME.

    (I have quibbles with language usage in the paper. For instance,

    upload_2018-10-1_9-45-19.png
    Which definition says ME can be dx'ed if it only lasted 4 months?
    upload_2018-10-1_9-45-32.png
    I might have used something like "asserting" rather than "demonstrating"....)
     
    MEMarge, adambeyoncelowe and Skycloud like this.
  6. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    110
    Likes Received:
    649
  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    1,173
    Likes Received:
    7,791
    NICE suggests four months, I believe. I think this is an attempt to see speedier diagnosis.
     
    Trish likes this.
  8. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    110
    Likes Received:
    649
    I am in favor of managing symptoms as soon as they are seen, but not sure about dx'ing at 4 months (or 3 as mentioned in the podcast). The dx criteria in the article don't seem to follow the ped. primer, the IOM report or the CCC which I find confusing.
    (Another grumble from me-Both the podcast and article get prevalence from Crawley's study which isn't about ME.... Inflating prevalence is just as bad as underestimating it.)
     
    Amw66, MEMarge, Skycloud and 2 others like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    580
    Likes Received:
    5,862
  10. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    558
    Likes Received:
    3,671
    For children/adolescents Dx can be 3-4 months, I think. However getting to see someone who is able to Dx you in that timescale is pretty difficult, unless you pay to go privately, in UK.
     
  11. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    334
    Likes Received:
    2,511
    [quote from the paper:
    This sentence is a bit misleading in my view. It seems to assume that if you manage it properly from the get go, that you may avoid a lifetime of chronic illness and disability. I disagree with this. i think we can all agree that pushing exercise and continuation of normal activities is harmful and may carry long term or permanent consequences. But if you practice pacing and work on sleep, healthy gut and the rest, it does not mean you are back to healthy. We know in fact that patients usually do not recover, though the odds are better in a pediatric population.

    In case people don’t know, Dr Ken Friedman is a long time advocate , father of a ME patient and retired physician and from teaching in a med school in New Jersey. Donna Pearson was a member of the now deceased CFSAC working in education I believe.
     
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    1,173
    Likes Received:
    7,791
    It's four months for an adult, and three for a child: https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis

    I believe they reduced this from the six months in the Oxford criteria because patient groups and clinicians advised we needed to speed up diagnosis.
     

Share This Page