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NHS CFS Service leaflet from the UK's NHS Maudsley Hospital

Discussion in 'General ME/CFS News' started by Bob, May 23, 2011.

  1. Bob

    Bob

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  2. maryb

    maryb iherb code TAK122

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    Thanks for the description Bob, I really can't read it I'd be sick.....er
     
  3. justinreilly

    justinreilly Senior Member

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    The name of the Chronic Fatigue Service says it all. A dedicated cadre of civil servants fighting the battle against tiredness and the truth. The few, the proud, the Chronic Fatigue Service.
     
  4. Enid

    Enid Senior Member

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    They remind me of the "cure all" potioners with a bottle of suspect medicine from the Wild West.
     
  5. Bob

    Bob

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    I didn't even notice that...

    But at least they are being honest in the title (even if that's the only place they are being honest)...
    Because it is actually an idiopathic fatigue service, not a CFS service...
    Unfortunately, then they start talking about CFS and ME inside the brochure.
     
  6. currer

    currer Senior Member

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    I'm afraid they have wasted their money, well the taxpayers money, in producing such a plausible little document.
    They are going to get shot to pieces.....-"Trust me, I'm a doctor"
    (I'm not, by the way, but its a good saying if you want to raise horrible suspicions in your listener's mind.)
     
  7. Desdinova

    Desdinova Senior Member

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    That Brochure was both Sad and hilarious at the same time. SLAM what a fitting acronym. Because after you're done with a round of treatment you'll feel like it was Wham Bam Thank Yo....

    Love how they emphasize the mental aspect by listing psychiatrists and mental health teams first. No one could possibly ever read anything negative into that.

    Hum treatments as in other then CBT or GET what would those be? They don't mention them in the brochure unless they mean the routine test that "may be ran"

    I'd love to be able to keep up with those but simply don't have the energy after working a full time job. After this I have little energy left in my energy envelope.

    Shopping for food or going out has to be planned, all events have to be planned way ahead of time to make sure theirs even a chance of my having the energy available to do or attend them.

    And that's just dealing with my fatigue and low energy symptoms. If my other health symptoms flare up those plans get nixed quickly.

    The crazy thing is I'm one of the lucky ones I can manage to work full time but little if anything else. And she has what I have but I couldn't get a diagnosis to save my life beyond FM.

    I just love the mental aspects that they quote and stress from his personal story. No one reading this would ever even entertain a passing notion that this person was burned out or depressed. The Sad thing is this guy sounds like he may very well have ME/CFS.


    Evidence based treatment let me guess their evidence shows that everyone is depressed and deconditioned. GET, CBT and Antidepressants for everyone. Now that's Treatment that's Therapy. Do they get some Cool-Aid to go with that?

    And I wonder what blood test actually get run on the patients? As well as who does the so called initial evaluation?
     
  8. Bob

    Bob

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    The theory behind CBT and GET is that Chronic Fatigue is perpetuated (caused) by the patient's own maladaptive thoughts and behaviours...
    i.e. A fear of activity and an avoidance of activity.
    Once a patient's psychological issues are dealt with, using CBT and GET then they will return to normal health.

    (These words are not taken from the leaflet. The theory is explained in the PACE Trial paper.)

    The only problem with this theory, is that they don't return to normal health, as demonstrated in the PACE Trial.
    In actual fact, in the PACE Trial they barely improved at all.
    Oh, and also, psychological interventions were proven to not help severely ill house-bound or bed-bound patients.
    Oh, and CBT doesn't improve patients' objectively measured physical ability, as proved by the PACE Trial.
    Oh, and the PACE Trial results include idiopathic fatigue patients, thus skewing the results for ME/CFS patients.
    Oh, and in real-world clinical settings, CBT and GET are well known to make some CFS patients more ill.
    I could go on.
     
  9. eric_s

    eric_s Senior Member

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    Man, i wish i hadn't read that... but the curiosity was stronger. I'm glad i don't live in the UK, even though i really liked London when i was there. That was before ME/CFS, Simon, and guess what, i would have loved to come back. * you...
     
  10. eric_s

    eric_s Senior Member

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    Yes, clearly what they say in this brochure is in contradiction to the results of the PACE trial. So not even in that flawed study were they able to get similar results to the ones they claim here.

    If in the part where they mention their success rate they would say the numbers are for ME or CFS, it would probably be illegal. But they don't mention ME or CFS there. And in the beginning they say their service is also for "unexplained fatigue". That's where they probably get their 25% of recovered patients.
     
  11. justinreilly

    justinreilly Senior Member

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    Great points. They claim ad naseum in their other materials that CBT/GET is the only evidence-based effective treatment. They are just evil liars.
     
  12. Boule de feu

    Boule de feu Senior Member

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    My reaction?
    Where do I sign? where do I sign?... Not!
    Not in a million years! Lol
     
  13. Snow Leopard

    Snow Leopard Hibernating

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    Since activity levels (at followup) don't change as a result of CBT, they can no longer claim that a decrease avoidance behaviour is associated with CBT improvements on self reported questionnaires.

    http://www.ncbi.nlm.nih.gov/pubmed/21414449

    They now claim the improvement is entirely cognitive, which is what we knew all along - if you condition patients to complain less about their symptoms, they report less on symptoms. Yet the paitients haven't actually improved as their activity levels haven't improved from their low level.
     
  14. anniekim

    anniekim Senior Member

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    I've just written a post in the Lifestyle Management section about how do you respond to people who are ill informed about GET for M.E. In my post, amongst other things, I explain this person I spoke today (who i don't know very well, thankfully) shared how he had read some leaflets and watched a dvd about a rehab clinic in London, offering by the sounds of it GET. (He implied that I was housebound due to deconditioning) and there were some great testimonies of people making great recoveries. He couldn't remember the name of the clinic, but i wonder whether it was the Maudesley featured here.

    it makes so angry and sad that these psychiatrists are still disseminating to the general public and other health professionals false information on the causes and treatments for m.e. As we all know, it's a tragedy that they insist GET can help when it's a treatment that can make the person with M.E so much worse. I felt the person i was speaking to didn't believe my explanation that GET can make many worse and if someone who knew nothing about m.e and read such a glossy brochure, you can understand why they would think i was over reacting, perhaps even have abnormal beliefs about exercise. It's a travesty what those pscyhs have done and are still doing in 2011. The negative effectxs of this false information filters down to us the patients and means we don't get the correct support as we should, or have to put up with friends and family believing we are refusing treatments that could help us.
     
  15. Enid

    Enid Senior Member

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    It's difficult to believe these people are actually doctors. Seem to turn things round - rather than medicine to which psychi may be added they present only psychi (and it's false assumptions). Chalder was trained in psychiatric nursing - says it all.
     
  16. anniekim

    anniekim Senior Member

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    Just checking is this a recent leaflet? Thanks
     
  17. Bob

    Bob

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  18. Bob

    Bob

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  19. Esther12

    Esther12 Senior Member

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    I like how they feel the need to keep telling themselves, mantra like, that their treatments are 'evidence based'.

    Cancer specialists using chemotherapy don't seem to have this preoccupation.
     
  20. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Well, here we see a typical scene of an ME patient being treated in the UK, by psychiatrists and their latest, up-to-date methods...

    [​IMG]


    (sorry for large pic mods, but hey, it's a classic! :D)
     

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