Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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help wanted finding quotes, please!

Discussion in 'General ME/CFS News' started by Graham, Mar 5, 2017.

  1. Graham

    Graham Senior Moment

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    I'm working on something at the moment, and can remember, way back, reading something here in the UK, possibly on an old NICE page, or possibly on an old advice sheet to GPs not to carry out too many tests on patients with ME because it enhances their false illness beliefs. Any ideas?
     
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  2. Mary

    Mary Senior Member

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    This might be helpful (ouch! it's hard to read!) http://www.ghpjournal.com/article/S0163-8343(97)80315-5/abstract
    I just realized this doesn't say anything about not doing too many tests, although the injunctin not to do "too many tests" would be a natural corollary from the above.
     
  3. wastwater

    wastwater Senior Member

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    Yes its very true,I think they think don't encourage the hypochondriacs is the way they see it
     
  4. daisybell

    daisybell Senior Member

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    Last edited: Mar 5, 2017
  5. *GG*

    *GG* Senior Member

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    Wow, seems like a broken system due for an overhaul!

    GG
     
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  6. BruceInOz

    BruceInOz Senior Member

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    The document from Margaret Williams "A TRAVESTY OF SCIENCE AND A TRAGEDY FOR PATIENTS: QUOTABLE QUOTES CONTINUED 2006 – 2016" linked to and discussed in this thread may be useful.

    If the quote is from SW et al., chances are it is in this document.
     
  7. sarah darwins

    sarah darwins I told you I was ill

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    Maybe it was just a bad dream I had, but wasn't there a video series telling doctors how to deal with these awful patients who insist on being ill without approval?
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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  10. A.B.

    A.B. Senior Member

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    There are some other outrageous quotes here

    http://forums.phoenixrising.me/index.php?threads/simon-wessely-quotes.21025/
     
  11. RogerBlack

    RogerBlack Senior Member

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    I note that inappropriate investigation _can_ cause harm.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322920/
    For example, post-mortem analysis of random dead Finnish people found that 36% of them had thyroid cancer - which was asymptomatic.
    https://www.nice.org.uk/guidance/cg53/chapter/1-guidance - could be a hell of a lot worse in its current form.

    It recommends CBT and GET as one possible treatment for 'mild and moderate' cases, which is probably the biggest downside.

    Other than this, it's mostly sensible - testing can be done to rule out other conditions, specialists with no experience of CFS should not treat CFS, no vigorous activity, ...

    Would it be nice to rewrite it to remove CBT and GET - yes.
    ('nice' in the sense that it absolutely should be done)
     
  12. user9876

    user9876 Senior Member

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    Valentijn likes this.
  13. Valentijn

    Valentijn Senior Member

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    Are you looking for an authoritative/official document endorsed by the NHS, etc to some extent, versus researchers spouting off in their publications?
     
  14. Joh

    Joh Inactivist

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    Thank you so much for your work, Graham! :)

    I know, it' not relevant here, but I'll add some gems from Germany. We don't have guidelines for ME/CFS, because this illness apparently doesn't exist (here), but CFS does get a chapter in the "guidelines for tiredness".

    It is explicitly stated that not even blood pressure or ferritin should be checked!!!

    The document wonders, why CFS is so often publicly discussed in the UK. Even the NICE guidelines are regarded as too much fuss about a mostly self-diagnosed, imaginary condition, but are mentioned as positive in comparison to the CCC (that convey the dangerous believe that CFS is somatic :jaw-drop:).

    By the way:
    It's also explained that patients fear to improve because it would mean to face tasks and responsibilities, that are perceived as a burden. Doctors are told to explain to patients, that these unwanted responsibilities could also be seen as a chance!

    In my region, the local guidelines even forbade to offer any tests for patients with the diagnosis CFS until december 2014. Doctors got into trouble, if they tried (the only CFS-specialist wasn't allowed to practice anymore and left). Additionally it was officially labeled as "inconsiderate towards colleagues" if an existing diagnosis of depression was changed into a CFS diagnosis. These local guidelines had to be removed in 2015 but seem to still exist in the minds (my GP refuses to treat even the most obvious symptoms or to refer me anywhere, apparently it's no reason to worry and fairly normal, if you're in your 30ies and bed-bound).

    Can't wait for a blood test from Stanford to end this farce! Sorry, for the irrelevant detour to Germany, couldn't resist. ;)
     
  15. Valentijn

    Valentijn Senior Member

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    www.beh-mht.nhs.uk/Downloads/GP%20and%20referrers/Primary%20Care%20Academy/A%20Psychiatric%20Summary%20Mind%20and%20Body.pdf is a fairly bad one from a local mental health NHS site.

    They're pretty careful with their language on anything directly associated with the NHS, versus the private endeavors of some of the quacks hired by the NHS. There probably won't be anything at all official using "false illness beliefs" or similar.
     
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  16. Valentijn

    Valentijn Senior Member

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    www.fndaction.org.uk/wp-content/uploads/2016/06/FNS-Needs-Assess-final-31.pdf This isn't from an NHS site, but has the Public Health England name and seal at the top.

     
    Last edited: Mar 6, 2017
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  17. sarah darwins

    sarah darwins I told you I was ill

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    Ah, it wasn't a dream ... there were these training videos for GPs. I don't know if there are specific bits about testing because I can't bring myself to watch past the first minute of them, but there's an old thread on them here:

    http://forums.phoenixrising.me/inde...sh-gps-on-how-to-deal-with-cfs-patients.3079/

    There are links to 4 videos in the first post by Dolphin.

    Be warned, these videos can cause nausea and other symptoms, including sore toes from kicking things.
     
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  18. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    I read that statement once about not asking many tests... it's so sickening
     
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  19. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    yuppie flu! disgusting! :mad::mad::mad::mad:
     
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  20. Hugo

    Hugo Senior Member

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    Thats circular reasoning lets not try to find something because we already know its up in the head. To paraphrase someome else who like cirkular reasoning.. SAD.
     

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