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NPR piece on Lancet article re: PACE study

Discussion in 'General ME/CFS News' started by valentinelynx, Feb 18, 2011.

  1. valentinelynx

    valentinelynx Senior Member

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    Wow. I was surprised to today to hear NPR "All Things Considered" do a story on CFS. Of course about the Lancet PACE "study." And the piece was horrible, truly horrible. Just earlier today I was thinking that I was on the fence about CAA: yeah they've done some good stuff, just not enough. BUT, in the NPR piece, they interview Kim McCleary, and she put her foot so far into her mouth I don't think it can be removed. I know the media often takes things out of context, but they state that she said something to the effect of (I'm paraphrasing what they paraphrased her as saying): "Yes, the Lancet study did show a benefit [from CBT & GET], but it's too bad they didn't study a biological cause."

    No, no, no! Why does she give credence to the study at all??!! The study is fully discredited by not studying patients that fit any acceptable criteria for having ME/CFS. That's what she should have said. She also is quoted as supporting Sharpe's comments in his interview, that the reason patients are disgruntled is because the study supports a psychological cause. If she said that this is in error, it was cut off. She should know better, being in the position of spokesperson, how to talk to the media. You have to control the interview. You don't answer the question asked; you deliberately put forward the message you want to convey and never stray from that, or you will be taken out of context. I don't see how she can put this behind her; it is too egregious.

    Then they interviewed some guy named Bruce Campbell, who "got over" CFS by gradual exercise. Poor guy tried to redeem himself by saying that it's more important not to overdo, and that he had hurt himself many times by doing so, but the bottom line that came through was: 13 years ago he could only walk a few minutes, and now he just celebrated his 65th birthday by hiking in the Sierras! Aaargh!

    Of course, the piece did not discuss any of the limitations of the study. The only "other side" was that patients won't like it because it underscores the belief in a psychological cause. Oh, those poor deluded crazy, lazy people. If only they accepted they were crazy, they could get better! That's sarcasm, by the way.
     
  2. SOC

    SOC Senior Member

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    Who is the PR person for this PACE study, getting them all this media placement? Can we hire him/her?
     
  3. Hope123

    Hope123 Senior Member

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  4. justinreilly

    justinreilly Senior Member

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    We already have her; she was interviewed in this NPR piece. :(
     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    SickofCFS.

    You made me laugh. They have a lot more money and clout for this stuff than we do. But the previous press release from the negative studies and the media campaign on this, makes you wonder, huh?

    I really feel bad for all you guys in UK.

    Tina
     
  6. me2

    me2

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    Saw this same sickening piece in Medscape today

    I subscribe to Medscape for news on cfs that is reported to MDs. They sent me a "topic alert" in my email about this study, and it is truly nauseating - especially since this thing was delivered to the email boxes of every interested MD. These researchers do seem to have some darn good P.R. in place....:headache:

    I am pasting the article below:

    From Medscape Medical News > Psychiatry
    CBT and Exercise Therapy Safe, Effective for Chronic Fatigue Syndrome
    Kate Johnson
    Authors and Disclosures
    Physician Rating: ( 1 Vote ) Rate This Article:

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    February 18, 2011 Cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are safe and moderately effective treatments for chronic fatigue syndrome when added to specialized medical care, according to the largest randomized trial of both treatments to date.

    In contrast, the addition of adaptive pacing therapy (APT) is no better than specialized medical care (SMC) alone, according to the pacing, graded activity, and cognitive behaviour therapy: a randomised evaluation (PACE) trial, a multicenter randomized controlled trial published online February 18 in The Lancet.

    Some patient organizations have favored APT and SMC therapy for chronic fatigue syndrome, recommending against CBT and GET because they could be harmful, write investigators led by professor Peter D. White, MD, Barts and The London School of Medicine in the United Kingdom.

    The PACE findings suggest otherwise in line with current recommendations from the UK National Institute for Health and Clinical Excellence.

    "Our results do not support pacing, in the form of APT, as first-line therapy," the study authors write. "Patients attending secondary care for chronic fatigue syndrome should be offered individual CBT or GET alongside SMC."

    In an accompanying editorial, Gijs Bleijenberg, PhD, and Hans Knoop, PhD, Radoud University Nijmegen Medical Centre, Expert Centre for Chronic Fatigue, in the Netherlands, say this "finding is important and should be communicated to patients to dispel unnecessary concerns about the possible detrimental effects of cognitive behavioural therapy and graded exercise therapy."

    Adverse Reactions Uncommon

    Serious adverse reactions were uncommon and occurred at similar rates in all treatment groups, the investigators report.

    The PACE trial randomized 641 chronic fatigue patients to 1 of 4 treatment groups: SMC alone or in combination with APT, CBT, or GET.

    All patients met the Oxford criteria for chronic fatigue syndrome, with some also meeting international criteria for the disorder or London criteria for myalgic encephalomyelitis.

    Treatment for all participants included at least 3 sessions of specialist medical care during 12 months, with more if clinically indicated. These sessions were offered by specialist physicians and involved information about the condition, advice, and pharmacotherapy, if needed, for insomnia, pain, or mood.

    For participants receiving adjunct APT, CBT, or GET, up to 14 sessions were offered during the first 23 weeks once weekly for the first month and subsequently every 2 weeks, with a booster session at week 36.

    The difference between APT and CBT and GET "is that APT encourages adaptation to the illness, whereas CBT and GET encourage gradual increases in activity with the aim of ameliorating the illness," the investigators write.

    Thus, APT aimed to achieve "optimum adaptation to the illness, helping the participant to plan and pace activity to reduce or avoid fatigue, achieve prioritised activities, and provide the best conditions for natural recovery."

    Better Outcomes with CBT, GET

    CBT was based on the theory of fear avoidance, the study authors explain.

    "The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participants symptoms and disability."

    GET was based on the theory that deconditioning and exercise intolerance contribute to fatigue.

    "The aim of the treatment was to help participants gradually return to appropriate physical activities, reverse the deconditioning, and thereby reduce fatigue and disability."

    Assessments at baseline, 12 weeks (midtherapy), 24 weeks (posttherapy), and 52 weeks after randomization aimed to determine the primary outcomes of fatigue, physical function, and safety.

    The study showed that all participants improved from baseline, with less fatigue and more physical function. However, those who received CBT or GET had significantly better outcomes than those who received APT or SMC alone.

    Outcomes were measured with the Chalder fatigue questionnaire and the 36-Item Short-Form physical function subscale.

    Although 43% of the APT group improved by at least 2 points for fatigue and at least 8 points for physical function, 59% of the CBT group and 61% of the GET group showed this level of improvement.

    Participants who received SMC alone had a comparable outcome to the APT group, with 45% reaching this level.

    Still Only Moderately Effective

    Similarly, although 16% of the APT group and 15% of the SMC group were within normal ranges for both primary outcomes at the end of the study, 30% of the CBT group and 28% of the GET group reached this goal.

    Secondary outcomes showed a similar pattern. Participants in the CBT and GET groups had better outcomes than the other participants for work and social adjustment scores, sleep disturbance, and depression (with the exception that GET was no different from APT for depression), and anxiety was lower.

    "The comparatively greater reduction in postexertional malaise with both CBT and GET compared with the other two treatments is notable, since the risk of exacerbation of this symptom is commonly given as a reason to avoid treatments such as GET," the study authors write.

    Although the findings show better efficacy of CBT and GET compared with APT, these treatments were still "only moderately effective," emphasizing that research into more effective treatments is needed.

    Subanalyses of groups with different diagnostic criteria for chronic fatigue syndrome and myalgic encephalomyelitis showed similar results, suggesting "the PACE findings can be generalised to patients who also meet alternative diagnostic criteria for chronic fatigue syndrome, but only if fatigue is their main symptom."

    Finally, they emphasize, "the effectiveness of behavioural treatment does not imply that the condition is psychological in nature."

    The fear avoidance theory of chronic fatigue syndrome regards the syndrome "as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue."

    Significant Contribution


    Dr. Magdalena R. Naylor
    "This is a very significant contribution to the field," said Magdalena R. Naylor, MD, PhD, when rreached for comment on the study.

    Dr. Naylor, who was not involved in the research, is professor of psychiatry at the University of Vermont and director of the MindBody Medicine Clinic, both in Burlington.

    The study stands out in that it found both superiority and safety of CBT and GET over APT, she said.

    "These 2 positive effects, documented on the largest randomized trial of cognitive behavioral therapy to date, might finally convince the providers and the patients' advocacy groups of the potential positive effects of CBT and GET as interventions," she noted.

    "What is interesting here is the documented power of the mind. What is fascinating is that the cognitive assumptions conveyed throughout the therapy process might impose the most significant treatment effect by decreasing not only the fatigue but also by improving the physical function."

    Dr. Naylor, who has used neuroimaging to document brain changes after CBT for pain, said future neuromaging studies into the mechanism of change using CBT and GET would help to improve outcomes.

    The trial was funded by the UK Medical Research Council and various government departments. Dr White has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company). The financial disclosures of the other study authors appear in the original article. Dr Naylor has disclosed no relevant financial relationships.

    Lancet. Published online February 18, 2011.


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    Medscape Medical News 2011 WebMD, LLC
     
  7. Enid

    Enid Senior Member

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    Yes, a very bad time for UK ME "usedtobeperkytina" - the Psychs seem on a mission to psychologise any medical condition. The flawed PACE trials (heterogeneity, neurological symptoms excluded, loose and outdated criteria selection - the list goes on) Mass hysteria next perhaps. And the "result" of whatever was studied just obvious plain common sense for ME sufferers - one tries to improve if/when able all functioning if possible. But that is quite individual. Lancet (unlike wild Press here) as reported today by Doctorslounge say GET & CBT may moderately improve outcome when added to specialist medical care for CFS. Gee - hope for us yet !
     
  8. illsince1977

    illsince1977 A shadow of my former self

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    I wrote the following to both ATC and the NPR Ombudsman:


    I encourage anyone who has the wherewithal to write what they are able to here http://help.npr.org/npr/includes/customer/npr/custforms/contactus.aspx .
     
  9. Hope123

    Hope123 Senior Member

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    I don't get up early enough for Weekend Edition but Scott Simon is a friend of Laura Hillenbrand's from what I know and he might be willing to do a follow-up interview.
     
  10. justinreilly

    justinreilly Senior Member

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  11. Rooney

    Rooney Senior Member

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    I just listened to the NPR clip. McCleary did really did fumble this terribly important interview. She did not control the interview and did not clarify the reason for outrage against the study. I wonder if she can hear herself and correct her message as she must do.

    Bruce Campbell states that he was walking twenty minutes at baseline before he incorporated rest. That far exceeds a typical patients abilities in my opinion.

    I'm totally outraged at having to confront all this as I thought I was a bit more immune living in the U.S. Americans seem to be piling on the poop as well as the Brits.
     
  12. August59

    August59 Daughters High School Graduation

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    I don't know what to think. We seem to be getting squashed by a bulldozer and we keep kicking ourselves in the ass trying to get out of the way! Studies like these never look at the really sick PWC's as they just skim the cream off the top. We can't get a positive XMRV study published, but hell fire we can get 20 damn contamination studies published. The US is not one freaking bit better than the UK shitheads.

    We are getting pushed down! Any study that has a chance of being positive has the funding cut. I don't want to hear a damn word about studies that are coming as I have heard this crap for a year and haven't seen them yet. When the life and death of patients lies in the hands of journals that publish what they feel like, when they feel like is damn sad state of affairs. They will not get published, so they might as well throw them in the trash. I'll make a prediction, the BWG will smack our ass silly when they are done and the NIH will not give us the time of day.

    If anybody has any sense they should never come to this country. There is no democracy here as the sharade would have someone think. Our own high standing advocate McCleary pisses on us. Yeah. I'm having a bad day, but it has lasted for the last few weeks!!!

    Thanks for listening to me rant!! Carry on!!
     
  13. LaurelW

    LaurelW Senior Member

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    :Retro mad::Retro mad::Retro mad:I hear ya.
     

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