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UK NHS Online Clinic for August is CFS/ME & Fibromyalgia

Discussion in 'General ME/CFS News' started by Firestormm, Jul 10, 2013.

  1. Esther12

    Esther12 Senior Member

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    SMC was going to be 'standard medical care', but they called it 'specialist medical care' because it involved the patient seeing a specialist, and being able to get basic drug treatments etc. This means that PACE was very unlikely to be able to show that CFS specialists were a waste of money.

    re APT: I thought this was really restrictive pacing. They had a 70% rule, so patients were told to only do 70% of what they felt comfortable doing - sounded terrible to me. I'm surprised it didn't lead to more patients feeling depressed. I think people are best off relaxing and doing what they feel like, and that all these attempts to medicalise patient's behaviour just because they have CFS are dodgy.
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  2. Firestormm

    Firestormm Senior Member

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  3. Esther12

    Esther12 Senior Member

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    I think that apt description is a bit misleading compared to the manual. To me, carefully matching is quite different to trying to do only 70% of. It's difficult to know exactly how it was applied though.
  4. peggy-sue

    peggy-sue

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    There's not a lot of use for 70% of the laundry hung up, or 70% of the dishwasher emptied...

    But I seem to remember that APT looked quite strenuous when I did first read about it - and you did get pushed to do more and more all the time, I thought.
    I certainly remember thinking "I'm not doing that!" :p
  5. WillowJ

    WillowJ Senior Member

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    as to control group, it's a little confusing. I think PACE started as a "randomized controlled trial" but then they stopped referring to SMC as a control group and started treating it like a treatment group.

    Then PACE became a "randomized trial" with no more mention of control. Except in the odd press release, perhaps, where this might have been claimed, not sure whether it was said directly; it was certainly implied. "Gold standard", which has certainly been stated, also implies blinding which was not done except in some small part of the analysis (but other portions of the analysis were done unblinded).

    They did not try to use the SMC group to control for natural course or the effect of receiving a diagnosis and basic medical care (which many people with a CFS diagnosis or fatigue without a diagnosis do not get). Nor did they have any other sort of control.

    I have seen charts showing most of the improvement came in the first few weeks of the trial, which is what one would expect if it came from getting a diagnosis and sleep and pain medicine, depression medicine if needed, etc. Also someone who appears empathetic, to manage your case. More graphs are here.

    In fact if you play the animation at the first graph (or look at the other graphs), you do find that the SMC group had a bigger improvement for self-reported fatigue (and for self-reported physical function), if you subtract the results of the SMC group to try to determine how much of SMC+GET was due to GET (and also how much of SMC+CBT was due to CBT).

    Not everyone I've seen discuss this is sure this is the best approach to calculating the effect of a control group.

    What is certain is that A+B compared to B alone cannot answer whether CBT or GET is effective.

    Study Design and Presentation -
    to clarify or confuse
    Daniel E Furst, MD
    UCLA Dep‘t of Rheumatology
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  6. Valentijn

    Valentijn Activity Level: 3

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    I wanted to point out that the clinic closes today, and there's a "thank you" thread in the "adult medical" forum at http://www.talkhealthpartnership.com/forum/viewtopic.php?f=493&t=4819, which really does seem to be the best place for it :p

    Anyhow, quite a few people have added their "thanks" already, and I think it would be great if PR members who have been posting there take a moment to do so as well.
  7. Firestormm

    Firestormm Senior Member

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  8. Sasha

    Sasha Fine, thank you

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    Thanks for posting about that - I've given that call for thanks its own thread, to draw attention to it:

    http://forums.phoenixrising.me/inde...s-online-clinic-ends-today-weds-20-aug.24825/
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  9. Valentijn

    Valentijn Activity Level: 3

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  10. Firestormm

    Firestormm Senior Member

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    I wonder if they'll do another one? Certainly seems to be a demand. They might like to give more thought to the next one as - take it from me - they were more than overwhelmed. I didn't like the closing of threads once they felt the question had been answered. I thought that wasn't very helpful for follow-up. Obviously a big glitch was the closure Sunday (think it was Sunday), for 'administration' to take place. One thing is for sure: the CFS/ME (and Fibro) community showed the NHS how they are not being catered for! Nice job peeps :)
    Sasha likes this.
  11. Sasha

    Sasha Fine, thank you

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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think this line from the first one sums the PACE trial up really succinctly:

    I do hope Dr Shepherd gets a good rest now. (Can't find the appropriate 'concerned face' emoticon)
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  13. Firestormm

    Firestormm Senior Member

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    I wouldn't worry. He has a new friend to help with any stress. Goes by the name 'Hunter' :) :)

    Hunter and Shepherd.jpg
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  14. Sasha

    Sasha Fine, thank you

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    There's this one :aghhh: but it's perhaps a bit over-concerned...
  15. Esther12

    Esther12 Senior Member

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    Did either of the pro-PACE bods ever really engage with the criticisms being made? Not that I saw.
  16. Valentijn

    Valentijn Activity Level: 3

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  17. Sasha

    Sasha Fine, thank you

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  18. Esther12

    Esther12 Senior Member

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    Ta V. Looks like you got an answer by acting a bit deferential and uncritical. The replies stopped when you gave too much of a hint of knowing what you were talking about. It's funny to think that she was on the committee that developed the NICE guidelines - as expert as it gets with CFS!
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  19. maryb

    maryb iherb code TAK122

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    Valentijn likes this.
  20. maryb

    maryb iherb code TAK122

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    yeah thats quite frightening....

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