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Article: A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 19, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    The press also prints the sections of interview that they want to - which makes some people who have been bitten by out of context remarks - wary of participating with them. I imagine she said much more - and that was left on the cutting floor because it did fit in the journalists 'story'.
  2. Cort

    Cort Phoenix Rising Founder

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    Well done! :rolleyes::rolleyes::rolleyes::rolleyes:

    As you noted in your post CBT is moving into MS and post-cancer fatigue...and a study on heart disease recently came out (it was successful in reducing the # of cardiac events, I think.). Natelson, as I remember, thinks CBT should be taught to everyone in medical school - I guess because it is a stress reducer...It is still mostly used in mood disorders but there are some exceptions.

    I plugged 'cognitive behavioral therapy' into the NIH clincal trials database

    http://projectreporter.nih.gov/reporter_searchresults.cfm?&new=1&icde=7151550&loc=2&CFID=34433770&CFTOKEN=49016940

    and it came up with 238 ongoing studies. Most are on mood disorders but it is reaching into other areas. Here is one on chronic obstructive pulmonary disease and its not all about QOL - they want to see if their program effects mortality and medical costs.

    Check out this one on MS - the primary effect or outcome is the # of lesions at the end of the study (!).

    Here's one on Lupus - the secondary outcome is measuring inflammation and biomarkers associated with the disease

  3. Bob

    Bob

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  4. acer2000

    acer2000 Senior Member

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    100% agreed. Its always harder to do damage control rather than to be proactive. The CAA should have sent out a press release pointing out the problems with this study and how it, more than anything, indicates the need to move past studies on behavioral approaches and go whole hog into funding research to find the biological cause.
  5. acer2000

    acer2000 Senior Member

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    This is a great idea! Have them do an article on this study, which comes to the opposite conclusions as the PACE study, and uses better metric and longer follow up! Even better, before someone contacts them, lets line up links to all of the papers that re-inforce this point. It would be good to have that as a sticky post anyways.
  6. Mark

    Mark Acting CEO

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    Loads of illuminating stuff since I posted, thanks everyone.

    Cort, one thing that seemed missing from the numbers analysis in your article, was the part discussed here somewhere about how about some of those who weren't eligible for inclusion - you mentioned those who were told they were told they weren't eligible but the breakdown of that, I thought, revealed that a large proportion of them were rejected for having - effectively - ME symptoms, like neurological or immune symptoms. I may be a little foggy on all that, but that was one of the few details pulled out from the analysis here that I didn't notice in your article.

    Key point. Everyone should have been prepared with press releases ready to go based on what we did already know, and response teams ready to maximise that, and got them all sent out alongside the study's press release. Immediate reaction from opponents is really, really tough, when the thing is so deviously timed and embargoed, but at least a pre-emptive press release priming journalists on all the flaws, expected flaws, disputed methodology, etc, could have been ready to go.

    ME Action did a great job there, I thought, releasing its own patient survey results alongside the PACE results, and at least getting a little bit of counter-information out there right near the beginning of the race. That was a smart move. Patient surveys can't be seen to be comparable to peer-reviewed science, one can't expect that, but it's still information worth reporting, it's about as much as could be expected, and it did get out there, a bit. Good job!
  7. Bob

    Bob

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  8. Dolphin

    Dolphin Senior Member

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    The CBT in the PACE Trial wasn't a a stress management program. That's more like the Lopez et al. study from Florida published recently.
  9. Bob

    Bob

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    Light Speed

    After one year of 'treatment', the reported improvement for the GET group of patients, was to walk an extra 67 meters in a 6 minute period, as compared to what they could do at the beginning of the study.

    If we were to assume that the rate of improvement would be continuous, then I've worked out that it would only take approximately 1,661,538,500 years of GET training in order to be able to walk at the speed of light for a 6 minute period (If only we would put our minds to it and stop malingering!) (Light travels 108,000,000,000 metres in a six minute period.)

    The study indicates that we'd only be able to travel at Light Speed for 6 minutes though, and with the depth of the relapse afterwards, I don't think it would be worth it really, just for a six minute joy-ride!

    Stupid study!

    (Sorry, it's late at night, and I should be in bed!)
    :cool:
  10. richvank

    richvank Senior Member

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    The most recent NIH workshop on chronic fatigue syndrome was the one on neuroimmune mechanisms held in June, 2003. Dr. Peter White was one of the invited speakers, and he spoke on graded exercise therapy. During the audience question period, I asked him whether he was concerned that exercise produces oxidizing free radicals, and that they might further deplete glutathione. His response was "I'm not a biochemist."

    Rich
  11. Dolphin

    Dolphin Senior Member

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    Peter White writes letters to journals if people suggest there might be risks with GET (barely writes about anything else, except in reply to the Lombardi et al. study even though they (he and colleagues) didn't say too much of substance, they just wanted to throw general dirt in the direction - there are plenty of worse studies out there that are much more clearly flawed). His line is that their GET program is safe. Even if that is the case (which I'm not convinced), he never (to my knowledge) admits there could be problems with other exercise programs or that people or doctors hearing exercising could help might lead to people with ME/CFS using exercise in other ways. I don't trust him as an unbiased person on the issue of safety. It reminds me very much of somebody associated with a pharmaceutical product. I could give more evidence but have a lot on.

    The insurance company(s) he does work for I'm sure like his opinion when he is denying people their claims until the person does a GET program (somebody showed information they got on their case which was shocking :eek:).
  12. richvank

    richvank Senior Member

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    Hi, Dolphin.

    Note that on the "crowd-sourced" site http://www.curetogether.com/chronic-fatigue-syndrome/treatments/ GET is running in next to last place in the "average effectiveness" ranking, just above drinking alcohol. Rest breaks and resting are running first and second.

    Rich
  13. Dolphin

    Dolphin Senior Member

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  14. acer2000

    acer2000 Senior Member

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    Yeah while this is much better than the quote she gave to CNN and NPR, it still stops short pointing out how this study actually proves the opposite of what the authors claimed in their press release. Namely, that the data actually show that CBT/GET are pretty much useless as far as impact on the symptoms of ME/CFS and that future research should focus exclusively on biomedical causes and treatments.
  15. Cort

    Cort Phoenix Rising Founder

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    I did miss that (completely)... It sounds like a good point. Looking at the news article we really lost the spin battle. I did notice this the SF rag

    Its just a frigging shame that they newspapers don't have a clue what 'improve' means.....And here's Peter White saying what we need to do is 'enhance the current therapies' not find new ones.
  16. acacia

    acacia

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    Hi Cort,
    This is my first post on your site.
    Thanks for the great summary of the study and for the enlightening comments by others.
    Has anybody found answers to some questions I have:

    1. What was the definition of 'serious adverse reaction'? I note there were very few of these. I gather it does not mean PEM which is pretty serious for me.
    2. Does anybody know how the 30% 'recovery rate' quoted by Bleijenberg in the Lancet was arrived at? the statistical explanation does not mean much. From this though it would seem to mean an average of 30% improvement among all the participants. This would mean that quite a few would have got worse than a 30% improvement.
    BBC News has already interpreted this vague statement to mean that 30% of patients returned to normal.
    3. Is it apparent form the report what 'other' symptoms were taken into account? Besides fatigue I guess. I have numerous'other' symptoms in accordance with ME.

    Thanks,
    acacia
  17. anciendaze

    anciendaze Senior Member

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    Concise Statement

    Cort

    I'm going to quote myself from another thread to present my most compact statement of what I believe the study achieved:

    I can't fault either the resources that went into the study or the expressed intent of those running it for lack of belief in psychological etiology. This brings up a question of British sporting etiquette. Should you congratulate a group for cheering an own goal?
  18. Guido den Broeder

    Guido den Broeder *****

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    Not much attention has yet been given to the fact that all four groups received 'standard medical care'. What we see is e.g. not the effect of CBT, but the effect of the combination of 'standard medical care' and CBT.

    But this SMC was not the same for every individual patient, and since the researchers knew which patients followed which regime, they had much opportunity to influence the outcome.

    Also, the statistical method used to calculate the significancy of the results does not take any dependencies into account. There is no justification for that, since antidepressants, antihypnotics and painkillers will most certainly influence how the participants (half of them psychiatric patients) perceive the effects of CBT, GET and 'adaptive pacing'. As a consequence, the reported significancy is biased and likely overestimated.

    Regards,

    Guido den Broeder
    www.me-cvsvereniging.nl
  19. Enid

    Enid Senior Member

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    All music to our ears here in the UK. Thanks to you all for thorough analysis/reasoning. And putting PACE where it belongs.
  20. anciendaze

    anciendaze Senior Member

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    Distinguishing Nonresponders

    Following a previous line of argument further, the most striking result of the study is a complete failure to distinguish responders who might benefit from proposed treatments from nonresponders except by overall failure. This is a powerful argument against scaling up. It also resurrects the cohort question.

    My succinct summary now looks like this:

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