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UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Discussion in 'ME/CFS research news' started by InitialConditions, May 8, 2023.

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Page 54 of 54
  1. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    2,791
    Seems like a very good idea - at the very least I'd be interested to know who supported funding this one!
     
    FMMM1, Jul 21, 2024 at 4:31 PM
    #1061
    alktipping, bobbler, Kitty and 3 others like this.
  2. Trish

    Trish Moderator Staff Member

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    I think the MEA normally have a good record on funding biomedical research, so I wouldn't dismiss them altogether. I wonder whether this project, since it's not biomedical, may have been funded from the general MEA funds rather than the research fund. I don't remember seeing documentation on this.
     
    Trish, Jul 21, 2024 at 4:34 PM
    #1062
    FMMM1, alktipping, bobbler and 3 others like this.
  3. Trish

    Trish Moderator Staff Member

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    53,649
    Location:
    UK
    Trish, Jul 21, 2024 at 4:36 PM
    #1063
    Lou B Lou, FMMM1, alktipping and 5 others like this.
  4. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,978
    And one so long that it batters even those not severe just to do half of one of them - and there are four of them !

    over-exertion by questionnaire, and coercion are such major issues those with ME have had used against them for so long I cannot believe a charity itself has allowed this to happen nevermind sponsoring those doing it

    there should be no way that they don’t know that those severe simply couldn’t do even a few of these questions without it having huge payback or feeling they weren’t really in control of their answers. Which is a massive safety and consent issue

    and I think the very same happens when you look at all four fir even milder - they won’t be functioning to catch out being coerced and led by the end of these.

    its not like equivalent illnesses would ever use these for measures so why is something so badly impacted by this exertion diving in to ask for this to be enforced onto patients?

    if decent biomedical research doesn’t touch this nonsense measure will it be ignored? Is it a way of continuing to block that ?

    because without a doubt using this PROM while not changing their offering one but was the plan of the BPS since 2013 to continue to manufacture / coerce ‘results’ to claim their harmful treatment that leaves people more debilitated somehow ‘helps’ and should continue to damage people and suck all the medical funding

    and I’ve not seen a jot of attitude or care to show there is intention to guard against this or do any different from its ‘designers’, or even be receptive to what aren’t just begging questions but matters of basic safety and human rights of consent etc

    what are they doing? And why don’t the MEA understand this and properly answer it?
     
    Last edited: Jul 21, 2024 at 10:36 PM
    bobbler, Jul 21, 2024 at 9:32 PM
    #1064
    Sean, JellyBabyKid, MrMagoo and 3 others like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    53,649
    Location:
    UK
    We have had many discussions of BACME on the forum. See this thread if you want to read or say more about it:
    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS
     
    Trish, Jul 21, 2024 at 9:42 PM
    #1065
    MrMagoo, Lou B Lou, Peter Trewhitt and 3 others like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    53,649
    Location:
    UK
    It is not clear to me whether this survey is intended as a research project to find out whether UK clinics have been implementing the NICE guideline, and/or for future use as part of the package of multiple PROMS to help clinicians care better for each pwME, and/or for service evaluation.

    Whichever it is, as with the other PROMS in this project, it's far too long, and some questions are ambiguous, inappropriate or just plan wrong.

    My suggestion is a simple one page tick box questionnaire, eg, off the top of my head:

    1. Basic demographic data if for service evaluation or just name if it's part of the clinical toolbox.

    2. Were you provided with the following, and were you satisfied with the provision: (provided yes/no, satisfactory yes/no, not applicable)
    a. diagnosis by a doctor
    b. information about common ME/CFS symptoms
    c. medication to help with symptoms such as sleep problems, nausea or pain
    d. information about how to recognise Post-exertional malaise
    e. Information about managing symptoms using aids to pacing such as activity and symptom diaries or apps, step and heart rate monitoring, and symptom-contingent pacing
    f. information and help with adjustments to education and work
    g. help accessing disability benefits - information and letters of support
    h. aids and adaptations such as wheelchairs
    i. help with organising care at home
    j. a care and support plan
    k. psychological support
    l. referral for specialist investigations
    m. Materials to take home or online resources
    n. Did the clinical staff treat you with respect
    o. Did the clinical staff listen to you and believe you
    p. Were consultations accessible (home visit, wheelchair access, online...)
    q. Contact details for follow up appointments/ further help and support/ annual review.
    ,,,

    The big advantage of a single one page with tick boxes is both pwME and clincian can see at a glance where there is satisfaction, dissatisfaction, and gaps in provision.

    My emphasis is on medical diagnosis, symptomatic treatments where possible, education about management, and support with accessing things that make life more manageable such as aids, work adjustments, disabilty benefits and social/personal care.
    ,,,,,,,,,,,,,,
     
    Trish, Jul 21, 2024 at 10:25 PM
    #1066
    Nellie, Lou B Lou, Sean and 7 others like this.
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