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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

"Shared decision-making: the case for letting patients decide which choice is best"

Discussion in 'Other Health News and Research' started by Dolphin, Jan 28, 2012.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,713
    Likes:
    5,541
    Free full text: http://findarticles.com/p/articles/mi_m0689/is_n3_v45/ai_19891674/

    I read this after seeing it referenced in:
    It's a relatively easy read: no biology really (except mention of a few tests a doctor can do) and no maths (except a few percentages).

    It's about physician paternalism (it uses this term twice I think - at least once anyway) - about physicians making decisions for patients rather than discussing the options with them.

    I think this is relevant in terms of managing the condition: where often patients are pushed onto a rehab approach rather than being given the option of a pacing approach.
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Nice to see Dolphin (re paternalism amongst too many). I well recall whilst tests/investigations carried out for severe GI problems and the few words I was allowed by the Consultant met with "you think too much"
  3. Marco

    Marco Old blackguard

    Messages:
    1,280
    Likes:
    962
    Near Cognac, France
    This occured to me thinking about Alex's blog - the blame game.

    In the UK context clinicians' (read GPs) judgements are very much subordinate to the NICE guidelines and we can see what happens when physicians overstep these.

    With regard to CBT and GET, as I understand the UK situation, ME/CFS patients are referred to 'specialist centres' by their GPs (who are probly glad to see the back of them in many cases). Regardless, the centres provide an outsourced service to GPs.

    I wonder would it make any impact if :

    (a) ME/CFS patients refused the referral on the basis that the benefits of CBT have been overstated and the physiological evidence that GET may be detrimental to their health; or

    (b) if willing to go along with it, report back to their GP with a full an accurate account of how useful/useless or detrimental they found it and what other therapies might now be considered?

    Would a high level of 'customer' dissatisfaction (if this were the case) begin to be noticed?
  4. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    I'm very certain those I saw very glad to the back of me (with one exception - Neurologist who had a vague idea about the viral involvement and privately apologised for what he couldn't yet understand).

    One bright hope for all who may have to follow - three young Docs in Accident and Emergency having foisted a psychiatrist on me eventually lined up to admit - "you know when you are ill". Mountains to move and we will get there. Who listens any more.

    Hey and I couldn't remember the day or cared in your stinking "profession" Simon Wessely. Try passings out yoursellf - oh what a joke.
  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,713
    Likes:
    5,541
    I have read some patients say they feel some pressure to go to keep their GP happy.

    or

    The number of individuals per GP might be small e.g. if 40,000 GPs in the UK or whatever.

    Not sure how the system works. It is an interesting idea.
    CFS POD have collected some information from the services - however I think they may be a bit selective in what they release.

See more popular forum discussions.

Share This Page