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For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 18, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.wolfson.qmul.ac.uk/images/pdfs/3.cbt-therapist-manual.pdf

    http://www.wolfson.qmul.ac.uk/images/pdfs/5.get-therapist-manual.pdf

    Should you attend a UK fatigue clinic this is what your therapist is told about your disease and recommended treatment.








    Absolutely no one with ME is safe in the 'care' of people with such views of this illness. These clinics that perpetuate the above myths do need to be boycotted.
     
  2. hixxy

    hixxy Senior Member

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    Why do patients go to these clinics? Are they somehow forced in order to keep getting disability benefits?
     
  3. Countrygirl

    Countrygirl Senior Member

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    Yes, @hixxy . After 40 years, I am now being forced to attend against my will on account of a well-known PACE proponent and researcher phoning my surgery, speaking to my GP, and persuading them that ME is psychological. It is not always possible to refuse as there are threats to withdraw one's continued care if you fail to co-operate, even though in theory that should not happen.
     
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  4. Valentijn

    Valentijn Senior Member

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    They aren't honestly informed about the beliefs and aims of the clinics.
     
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  5. A.B.

    A.B. Senior Member

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    It's a nice trick they are using. They make up a model, and then skip the testing step, and just talk as if it was a useful model. Everyone will assume that it has been tested and found to be correct. It certainly is a useful model, if your goal is to promote these therapies. In reality they are constantly disproving their own model with their own studies.

    For example in PACE and other studies one could see that a change in beliefs didn't correlate with improved performance on the walking distance test, the step tests, employment, daily step counts. Patients appear to have adopted "helpful beliefs" and appear to believe their health has improved but there is no change in disability (assuming the responses reflect at least partially genuine change in cognition, and not entirely response bias).
     
    Last edited: Aug 18, 2017
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  6. Molly98

    Molly98 Senior Member

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    They say Assume rather a lot of times, oh, wait a minute is that because they have to assume and guess because it's just an idea they floated from the sky and there is no evidence for what so ever.

    Don't any of the therapist have the brains to ask why they are assuming everything about these patients.

    What a crock of shit.

    Utter Bollocks of the highest order
     
  7. Cheshire

    Cheshire Senior Member

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    Just came across this video.


    They keep repeating EBM like a mantra...


    They are so eager to say to patients that their condition is not psychological that their explanations are totally illogical:

    10:52 "patients should know that there are well acceptable psychological treatments although that this does not mean at all that there is a psychological cause for their complaints."
    12:00 "I would change the ? between physical and mental health. Let's forget about that."

    Fed up of this hypocritical nonsense. A psychological treatment is for psychological issues. Period. That's not dismissing psychiatric patients to say so, that's adapting treatment to causes.
    They act as if the cause of diseases didn't matter. Would such a speech be acceptable for cancer patients? This is insane.


    "The second thing we've got to do is to recognise that this is a very very big area, it's expensive, it causes a huge amount of suffering and destress and disability."
    Yeah, sure. Start advocating for equality of social rights between "psychiatric" and "organic" patients first.
     
  8. Sean

    Sean Senior Member

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    Stopped there. Know what is coming. Heard it all before, for thirty years.

    Life is too short to be re-reading this same old gutless fraudulent drivel yet again.

    To our UK friends: Keep copies of this stuff, with date-time stamps, so it cannot be conveniently disappeared from the record, and can be dragged up in evidence when the accountability phase arrives, which is getting closer and closer.
     
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  9. Invisible Woman

    Invisible Woman Senior Member

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    Well, as I have pointed out numerous times to medics over the years:

    When I was a kid I played sports. Most sports have a "season". So there would be a period when you started up the new season when you had to get fit for that sport all over again. Yes, sometimes that hurt, made you tired etc.

    BUT: as a person who has ME I can categorically tell you that ME PEM and pain/tiredness/discomfort caused be becoming fit are two entirely different things. They feel entirely different because they ARE entirely different.

    Treating PEM in the same way as treating the side effects of becoming match fit again doesn't work. I know. I tried it. I tried various variations of it.

    On my own in a room with a "therapist" only one of us has experience of both and therefore is the expert. That would be me not the "therapist".
     
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  10. Invisible Woman

    Invisible Woman Senior Member

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    Many of the newly diagnosed don't know any better and are desperate for answers.

    (In) Action for ME is the charity many newly diagnosed are pointed towards and they gave colluded in this type of cr@p over the years.

    Many newly diagnosed patients will be stunned with diagnosis and may be thinking but that can't be right as I'm really I'll. They'll bend over backwards to prove they are not either lacking in moral fibre nor are they malingerers. They'll do themselves a lot of harm in the process. Then they will be dubbed malingerers / weak anyway.

    :mad::bang-head:
     
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  11. maccas dad

    maccas dad

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    If I may put a different slant on this topic. Whilst I totally agree with all the members above comments, I think there is some positives to be taken from these clinics.

    After having a serious relapse around 7 years ago my doctor suggested I could attend a clinic that ran one afternoon a week for about 8 weeks. Bewildered by the catastrophic change in my health I pushed myself to attend. What it did give me was more of an insight into the illness and suggested ways of coping with it. Meeting other people on the course who were in the same boat so I did not feel so isolated. It got me out of the house with some effort.

    I guess the downside is that once the course had finished, that's it, back to square one and totally forgotten about again. Also I am sitting on my bed in the middle of the day, 6 years on, no recovery, hey ho. Apologies if have veered off topic. The advice the clinic gave was I am sure well intentioned and the lady had had ME to some degree as well and was not completely recovered.
     
  12. unicorn7

    unicorn7

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    I am pretty shocked to read this actually, I have heard it all:eek:

    Especially the positive reinforcement drove me mad. At the time I had a rehabilitation program, I was very convinced to be very honest about my problems. It's in my nature to make myself look better and healthier than I am and my boyfriend and parents urged me to really get the point across that something was not normal.

    When the physiotherapist asked me how I was and I said every week it was still the same, she would always try to turn my words around and say that I was better:confused:
    She would comment on that my muscles felt better to her (not to me...). When I told her I felt absolutely horrible ill, she would say that I did something extra (walked for an extra minute or whatever), so that was still progress!!:balloons:
    I felt like I was some sort of crazy toddler.

    Suddenly after a few sessions, she told me the rehabilitation was done. I thought we had hardly even started yet. I had a talk with the overseeing rehabilitation docter and she was very nice. As soon as I said I was very disappointed in the whole process, she turned completely around, said I was't positive enough and basically it was all my own fault for not trying hard enough.

    I didn't know at the time. I didn't go to a specific clinic, I went to a rehabilitation-centre at the hospital, because the neurologist couldn't find anything. I think they put a CFS label on me, but they didn't tell me. I thought I had a burn-out that wouldn't go away. It seemed like a good idea to try and build myself up again through exercises, physiotherapy at the time. I didn't know anything about CFS or ME at the time.
     
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  13. Starlight

    Starlight Senior Member

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  14. NelliePledge

    NelliePledge plodder

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    I went as I still work part time and if you're off sick getting paid your employer right expects you to take available treatment and not their fault this flawed approach is what you get from the NHS. The programme was 8 sessions on different topics. They did "educate" people about "CFS/ME" having bio psych and social elements all very high level. Activity management and relaxation were big elements there was encouragement to increase/vary activity within own limits and priorities but no way they could actually check people were increasing anything. I made it clear that as someone living on my own it simply wasn't feasible to spend my energy on exercise for the sake of it and to be fair I wasn't pressured. So it was BPS lite. That hospital clinic has closed now and the service is through generic pain or fatigue service in community under IAPT/MUS no idea what their approach is.
     
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  15. Sean

    Sean Senior Member

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    Gaslighting. Standard tactic for psychopaths.
     
  16. A.B.

    A.B. Senior Member

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    Maybe they're just misinformed. They have been told that science has proven patients can get better and even recover by following these steps.
     
  17. unicorn7

    unicorn7

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    :jaw-drop: I had to look up what gas lighting means:D

    Luckily I took my dad to that conversation, so I think she was still holding back and he was pretty shocked about the way she was talking to me.
     
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  18. Jenny

    Jenny Senior Member

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    This 2004 document is what was used in the PACE trial. Do we know which clinics are still using this or something similar?
     
  19. Sean

    Sean Senior Member

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    I'm not that generous to them anymore. It would take a pretty thick or dishonest human being not to see the problem with the way @unicorn7 was treated. Gaslighting, double-bind rhetoric, extortion, and intimidation have always been unacceptable.
     
    Last edited: Aug 18, 2017
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  20. TiredSam

    TiredSam The wise nematode hibernates

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    When I had my first symptoms of M.E., I waited a few weeks until I felt better again, then tried to build up again slowly. Quite a few times in the first year. Didn't we all? It didn't work. It made me worse every time.

    So why would doing it under the supervision of the psycho social club make any difference? And when hundreds of thousands of sufferers say "tried that, didn't work", what kind of arrogance does it take to ignore that feedback from the patients and plough on with the same shit regardless? And to have no interest whatever in investigating what else could be going on?

    Arseholes.
     
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