1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Positive Care Programme

Discussion in 'Information and Resources' started by LitlFrog, Nov 27, 2010.

  1. LitlFrog

    LitlFrog

    Messages:
    5
    Likes:
    0
    Positive Care Programme

    The description details below are based on the patient respones to the programme, as detailed on the site: 38% visited their GP less often 32% were able to reduce their medication 94% found the Programme helped them to understand how their lifestyle affected their health 91% made positive changes to their lifestyle to improve their health 92% said their mental wellbeing had improved 90% said they now take more responsbility for their health.

    www.touchstone-leeds.co.uk/view.aspx?id=122
  2. IamME

    IamME Too sick for an identity

    Messages:
    110
    Likes:
    5
    Is this a satire on irrelevent joke services in lieu of medicalisation of M.E.? This is nothing to do with "care" as commonly defined, it's all about patronising reassurance and a kick up the backside to become "responsible" and not "avoidant", a la Peter White & co.

    "* 38% visited their GP less often"
    Most pwME hardly ever need to see a GP who rejects ME, cannot accept ME disability and promotes CBT/GET "evidence". Basically we need NHS GPs worth seeing.

    "* 32% were able to reduce their medication"
    WHAT medication? LOL The only way that is going to happen is with a big gun like an antiviral or immune modulator, but it may be we'll need a whole set of pills. As it stands people with progressive ME gather complications.

    "* 94% found the Programme helped them to understand how their lifestyle affected their health
    * 91% made positive changes to their lifestyle to improve their health"

    People with ME can't afford a "lifestyle" -- ME aready robs that and enforces volitional intractability. We're not talking about so-called chronic fatigue people. PWME are not morons so why would the tough lesson of an exertional disease need explaining? It's validation and clinical acceptance and practical support that is required.

    "* 92% said their mental wellbeing had improved"
    The relevence of which is...?

    All these figures demonstrate is that self-selection bias is broadly appropriate, not the therapy itself. We need to know how many people appropriately refused (or were too ill) to take up this stuff to get an unbiased picture, not to mention the case definition and severity level.

    "* 90% said they now take more responsbility for their health"
    PWME are already forced to take TOO MUCH blame and responsibility and basically be their own physicians. Don't you think it's about time the so-called [biomedical] caring professions took some and included us in their remit? The sick role is supposed to absolve patients of the responsibiliies of the well. We're still awaiting that basic right.

    Not that this is the only patronising nonsense the aim of which seems to make health officials look concerned while keeping patients distracted from holding the establishment/ institutions accountable.

    Like many public health bodies/charities, this thing looks heavily orientated toward mental health:

    http://www.touchstone-leeds.co.uk/view.aspx?id=23
    froufox and Googsta like this.
  3. Sleepyblondie

    Sleepyblondie

    Messages:
    3
    Likes:
    0
    I attended the Positive Care Programme, I enjoyed it, but it didnt make me any better. Getting free massage, reflexology, Indian head massage, etc, was great. Talking to other people with long term health provlems was great. Seeing similarities and differences between people suffering different conditions was interesting. Very few of us looked ill. But as a treatment for m.e.? No.
  4. Daffodil

    Daffodil Senior Member

    Messages:
    2,736
    Likes:
    731
    ooo sounds heavenly. i wish they had all that stuff free somewhere!!

See more popular forum discussions.

Share This Page