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A few Qs, mainly about PACE

Discussion in 'General ME/CFS Discussion' started by JohntheJack, Feb 21, 2015.

  1. JohntheJack

    JohntheJack Senior Member

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    I was wondering if someone could answer the following, please. I'm aware of most of the debate around PACE but interested in a few details.

    1. Are the results of the 6-minute step test available? Could someone let me know whatever is available (or provide a link), please?

    2. Am I right in thinking that there was no improvement in the CBT group and only a small improvement in the GET group in that test?

    3. It would be interesting to see anonymized individual results or at least a detailed breakdown of results. Is that part of the information they're refusing to release?

    4. The GET protocol says that 'planned physical activity' should determine what each participant does. Have they released anonymized details of these plans and how much activity increased for participants? Or are they again refusing to release that?

    And not about PACE.

    5. Does anyone have a comparison of money spent on physical studies as opposed to psychological and epidemiological studies by UK government over, say, the last 25 years?

    Thanks, anyone who can help.
     
  2. Sasha

    Sasha Fine, thank you

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    I think @Graham can help with this one.
     
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  3. Esther12

    Esther12 Senior Member

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    1: They (group means) are in the original Lancet PACE paper. I could pull them out if you don't have access.
    2: Yup [edit: Or at least, no improvement over the control group.].
    3: Anonymised data has been requested here, but only after they refused to release results for outcomes laid out in their protocol: https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-55844
    4: They dropped actometers as an outcome measure, so we have no measure in this. The recent mediation paper included data on 'fitness' which showed GET did not lead to an improvement there.

    5: Yeah - Graham's the one to ask about that.
     
    Last edited: Feb 21, 2015
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  4. Graham

    Graham Senior Moment

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    1. Or if you want the graphic version of the walking test, try



    which is the first video in the sequence. Video 7 covers the recovery claims

    ()

    2. All the groups improved between the first and second test, but not by much, and by the same amount, apart from the CBT group that did a bit more. So CBT added nothing on when compared with the group that didn't get any therapies.
    We did do a big analysis on the original PACE trial in 2011

    (http://evaluatingpace.phoenixrising.me/homepageanim.html)

    5. Video 5 shows the spending in the US in 2011

    ()

    and video 8 the corresponding spending in the UK

    ().

    As a rough summary, no spending at all from the MRC from 1990 onwards into biomedical studies, up to and including 2011, and probably not from 1980 onwards, although the data in the 80s is less reliable. I have offered my observations to the MRC and asked if I have missed anything and they were not able to come up with any studies. In 2012, 5 studies were funded, probably as a result of 123 MPs signing an Early Day Motion in 2010 calling for them to invest in such studies. That came to £1.6 million. There were also two other pushes by parliament for them to invest in biomedical studies - the Chief Medical Officer's Report of 2002 and the Gibson Inquiry of 2006, which rubbished their claims of not getting suitable applications. Nor has any money been spent directly by the NIHR (the research section of the NHS). I found 9 small departmental investigations (where a doctor decided to try one or two further tests). Only three of these registered that they needed additional funding (from memory around £2000 for each of 2 of them, and £20,000 for the third) but none of that money came directly from NIHR.

    I've got more details in my notes for people who have written to their MPs and got an anodyne response. If you would like to have them, please PM me with your email address, and I will send them to you. I'm trying to persuade everyone to write to their MPs. At the rate the charities raise money, it will take us 50 years to match the PACE funding. The Gibson Inquiry stressed that they should support and encourage big trials into finding a biomedical test, and some basic treatment, and think in terms of starting off with around £11 million.

    All of this information comes from a spreadsheet produced by the MRC and from a database from a website of the NIHR. Both are now difficult to obtain, but I have copies (they are big files). Bob kindly changed the format of the second one from Access to one that I could use.

    Too much information? It's always a risk asking me.
     
  5. JohntheJack

    JohntheJack Senior Member

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    Thanks, Esther.

    1. If you could pull out those details, that would be appreciated.

    2. Thanks. Hence the brilliant line in PACE: 'Objective measures of physical activity have been found previously to correlate poorly with self-reported outcomes.' It's the 'homeopathy defence': if the objective measures don't show any improvement, go with the subjective ones.

    3. That's what I thought.

    4. I was thinking more along the lines of eg of those patients on GET setting out to increase activity by 20% in month 1, how many achieved that? IE how many GET patients actually fulfilled the 'planned physical activity'. I presume they haven't released that either.

    5. And he has, thanks.
     
  6. JohntheJack

    JohntheJack Senior Member

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    Thanks, Graham.

    That's a lot of good information. The bit on the studies is excellent. It's concrete proof of the effect of public policy based on the false Wessely doctrine.

    I'll see what I can get out of the rest of your answers as well in due course, but I have problems with videos. I find my fried brain doesn't like the sensation overload.

    Thanks for replying.
     
  7. Esther12

    Esther12 Senior Member

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    1) Here you go - this is from table 6.

    PACE 6mwt.JPG

    The comparison with SMC and APT includes baseline adjustments.

    4) No real data on this. They said that adherence to therapy was good, but lack of improvement in fitness would seem to indicate that few patients managed to sustain any of the increases in exercise they attempted. Adherence could be good even if the therapy did not work.

    The GET therapist manual says:

    "Apart from improvements in CFS/ME and function, a major objective for GET is to
    undertake the amount of exercise recommended for full health and prevention of disease.
    The quantity of exercise recommended by the Chief Medical Officer (2004) is 30-45
    minute sessions of moderate intensity physical activity at least five times a week."

    If many patients were achieving anything like that, we should have seen improvements in fitness.
     
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  8. JohntheJack

    JohntheJack Senior Member

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    Thanks.

    1. That's what I was looking for.

    4. It would be interesting to see such data.
    Yes, as you say, there's no way patients were doing that if they then didn't improve more dramatically in the step test.

    Thanks again to you and Graham, much appreciated.
     
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  9. Esther12

    Esther12 Senior Member

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  10. JohntheJack

    JohntheJack Senior Member

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    Thanks. It is interesting.
     
  11. Graham

    Graham Senior Moment

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    No problem, Jack. It's nice to feel useful sometimes. You can ignore the videos, but if you want the MP fact sheets, they are two 2-sided A4 summaries, but not too heavy.
     
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  12. JohntheJack

    JohntheJack Senior Member

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    Thanks, Graham. I am making my way through the videos as well, so definitely not wasted. I've PM'd you my email address, but no hurry. Only as and when you can.

    Thanks again.
     

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