A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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"Support, empower and employ people with M.E. A toolkit for professionals"

Discussion in 'Finances, Work, and Disability' started by Dolphin, Oct 23, 2016.

  1. Dolphin

    Dolphin Senior Member

    (40-page free booklet)
    SEE M.E. toolkit for professionals
    (I haven't read it yet myself)
    AndyPR and CFS_for_19_years like this.
  2. Old Bones

    Old Bones Senior Member

    Not a bad document, but definitely more suited to those at the mild end of the ME spectrum.

    The good:

    "It is important to understand that the guidance given in this toolkit will not automatically result in your client with M.E. being able to sustain or return to employment. Despite practicing pacing (see opposite) and deploying self-management skills shared by specialist clinicians, some people with M.E. are simply too ill to return to employment."

    "M.E. is significantly more disabling than most other chronic health conditions, including lung disease, depression, heart disease and diabetes."

    "However, it’s important to note that pacing is not a cure – there is no pharmacological cure for M.E. It is also important to note that, for the most severely affected, it is often the case that no effective symptom-management strategies can be found."

    "In order to support a person with M.E. towards their employment goals it is important to understand that an individual’s experience of the condition is a very personal one. For example, one person who appears to be managing well may be delicately balancing a variety of coping mechanisms in order to successfully manage their situation. It does not necessarily follow that they have capacity to make changes or take on new actions."

    "Your client with M.E. is the best expert on their condition."

    The not so good, or at least impractical, for those moderate - severe, where a bad day means bedridden:

    "Patient surveys repeatedly report pacing to be the most popular symptom-management approach used by people with M.E., and its key principles are:
    • establish a baseline (the level at which you can maintain a particular activity on both a good and a bad day)
    increase activity from this established baseline by no more than 10%."
    (a good "crash" recipe)

    "Another person with M.E. who is reluctant to take on more activity may have previously experienced bad set-backs and relapses in the past. However, with the right clinical guidance and practical workplace adjustments, they may have capacity to sustain a little more . . "
    (implies false illness beliefs?)

    "Key principles for planning future employment: (sounds like GET applied to the workforce)
    Progress needs to be slow and steady, building up from a reliable and sustainable baseline.
    • It is important to build capacity at an individually appropriate rate and consolidate before increasing
    • Encourage the person with M.E. to think of any work-related activity as part of building up their baseline and encourage them to work with their clinician to do so appropriately.
    • Explore the possibility of starting with part-time hours to build their baseline and confidence."

    (sounds like lack of confidence is considered a major contributor to not working)
    Increase understanding and confidence about what they can do by helping them to access volunteering and/or courses. . . This provides evidence of their reliability to employers and themselves . . .
    It can help build capacity and confidence to start by agreeing small activities or splitting larger activities into stages."
    (Not once has undertaking small activities, or splitting larger activities into stages, resulted in increased capacity, or confidence, for me. My limitations are my limitations.)

    "Sustaining work:
    Ultimately it is not walking in the door on day one which causes most anxiety about returning to work, but sustaining that work."
    (Nope. I'm not anxious, I'm ill.)
    Last edited: Oct 23, 2016
    Izola, Cheshire, Valentijn and 7 others like this.
  3. Valentijn

    Valentijn Senior Member

    Oh look, AfME is going for "Worst Charity of the Year" again :trophy::meh:

    Graded activity (GET) does absolutely nothing for ability to work or physically function. It only results in a temporary self-reported reduction in fatigue, which follows the pattern of the placebo effect.

    It's bad enough seeing the psychobabblers lie through their teeth to advance their own careers. We shouldn't be seeing the same crap from a supposed patient charity. Are they completely corrupt or just completely unable to comprehend the research?
    Dolphin likes this.
  4. A.B.

    A.B. Senior Member

    or insecure and afraid to go against authority.
    Dolphin likes this.

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