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CAA: GET and CBT effective

Blog entry posted by justinreilly, Feb 18, 2011.

Kim McCleary's response on cnn.com to the PACE Trial results bums me out.

http://www.cnn.com/2011/HEALTH/02/17/chronic.fatigue/

EDIT: This text of the CNN article added:

[EDIT; reference to NPR piece and facebook added:]
and it bums me out here too on NPR (audio- CAA position from 2:00 to 2:30- and accompanying article, which differ a bit, here):

http://www.wbur.org/npr/133865482/p...e-look-best-to-treat-chronic-fatigue-syndrome

From the NPR audio at 2:15:

and here on CAA's facebook:

www.facebook.com/notes/the-cfids-association-of-america/falling-off-the-pace/10150148445700539

[Edit: first sentence edited]
McCleary's only reported problems with this study is that these therapies- GET and the evil version of CBT- which she calls beneficial on CAA's facebook page and in the NPR interview- aren't available in the US and that studies of psychological factors may make "CFS" patients feel that people are saying "CFS" is psychological. It seems apparent to me now that giving Peter White his own little section in the Spark materials to promote GET as the "only treatment proven effective" was no oversight or accident!

I did actually really hope that CAA would shift it's approach when all the criticism settled in and it's board had more time to reflect on the fact that every aware ME patient knows what CAA is doing and that consequently its revenues are going to continue to slide until there are not enough to support it at some point in the not too distant future.

Something is really weird here, imo. The fact that she is continuing in this destructive path i can comprehend. The worst that can happen to McCleary and Vernon is they milk CAA for all the cash they can before it implodes and they get an early retirement with a nice nest egg. But why is the board, who are unpaid patients and patients' relatives behind them?? They see McCleary piloting CAA into the ground while packing her parachute with cash to soften her landing. Why are all 15 or how ever many of them there are just sitting there and supporting her?? Is she hypnotoad? Using jedi mind tricks on them? Noone can be that charming. Am I missing something??

I understand she is a hard worker. She seems from Jennie Spotila's reports and what i have seen that she gets a good amount of work done. It seems from my outside view that she would be a truly excellent executive vice president or chief operations officer, but I am hardly alone in my view that she has shown (over 20 years) that she is a very bad choice for CEO of CAA.

Her comments on the PACE trial results are a case in point. The PACE paper isn't some random thing out of left field. We have known about the PACE trial and methodology for a long time and it has been criticized heavily and in detail by others. She should have been prepared and ready to say only four things when media called:

1. This is a scam
2. The cardinal feature of ME is PEM
3. They do this scam by using a fake definition to lie and say tired and depressed people have ME and
4. These 'therapies' are human rights abuses: lying to patients to tell them they have no disease and to exercise, the exact thing that will make their severe illness even worse.

George W. Bush was a moron and he could stay 'on message'. She can do this. Once she has mastered this, she can move on to 'freestyling', not before. And until she can deliver messages which benefit patients, she should not speak.

I would prefer it if CAA would truly represent patients views such as those i've seen expressed on this forum and mecfsforums.org. I think this would benefit both patients and CAA enormously. And I and, I believe, the patient community would really rally behind CAA and we would have true unity!

But if CAA's mission is simply to stimulate ME research, but not to represent or advocate for patients, then it should make this explicit to everyone to whom it is communicating and not speak on any issue other than stimulating ME research. If a reporter asks for commentary on other subjects, refer them to an org that explicitly represents patients such as PANDORA, MCWPA or WPI or other, hopefully more out-spoken orgs which may emerge.
  1. raven
    Just got the CFIDSlink email. McCleary says the exact same thing again about GET and CBT being modestly beneficial. I don't remember requesting another slap in the face. emphasis added

    McCleary, and others within the CAA, believe GET and CBT are beneficial. Part of the CDC's CFS section has educational courses for health professionals http://www.cdc.gov/cfs/education/wb3151/index.html

    A Primer for Allied Health Professionals, Course WB3151

    Faculty and Credentials

    This educational module is based upon curriculum content from the CDC primary care provider education project and experts in CFS and allied health also contributed to the development of the programs content.

    Origin Date: July 11, 2006
    Renewal Date: July 1, 2009
    Expiration Date: June 30, 2012

    The following individuals are considered content experts for this activity:

    James Jones, MD, Research Medical Officer, Centers for Disease Control and Prevention
    Teresa Lupton, RN, BSS, Coordinator for Medical Opportunities, CFIDS Association of America
    Kimbery McCleary, BA, CEO, CFIDS Association of America
    William Reeves, MD, Branch Chief, Centers for Disease Control and Prevention
    Vicki Walker, BA, Manager, Research and Public Policy, CFIDS Association of America (formerly)

    One of the Course Objectives is Define CFS according to the often criticized 1994 Case Definition (Fukada and Straus among others)

    The course content Chapter 3.1: Management of CFS includes in part:


    Cognitive Behavioral Therapy (CBT)
    Activity Pacing
    Graded Activity and Graded Exercise
    Strength and Conditioning
    Pacing/Envelope Theory
    Other Health Issues


    Stress, anxiety and depression
    Cognitive dysfunction
    Coping skills


    There are 3 "experts" associated with the CAA along with Bill Reeves and his right hand man, Jim Jones. This is how many health care professionals are being "educated" about CFS. It's at times inaccurate and often harmful information. McCleary will continue to deliver slaps as long as she's compensated to do so.
  2. cigana
    Thanks for that Justin. I would say that we should demand that any donors who may have conflict of interests be announced - surely this is a basic right and not unreasonable.
  3. justinreilly
    Who Are the Big Donors Keeping CAA Afloat?

    As I said about a year ago, I think the board is derelicting it's fiduciary duty of absolute loyalty to caa by allowing McCleary to drive the org into the ground to the point that it will have to dissolve at some point in the not too distant future.

    Jennie said in comments to the interview article that the board does not want to get rid of McCleary or reduce her $178K compensation (including benefits). In fact Jennie, at least, feels that's a bargain for her. I wonder if all this has been a wake up call for them. nothing else has, but now the cries of dissatisfaction are operatic. If the end results of the poll are as now- 94% want her to go and caa change direction- i think they will lose what little fig leaf of credibility they had.

    In light of this, I am beginning to wonder who their donors are if they are so recalcitrant to change. Someone speculated to me they might be insurers. The board seems to think it can operate with total impunity. They are smart people. Smart people would realize they needed to change if they depended on the support of patients at large since in this unscientific rough poll 94% are extremely unsatisfied. Is the fact they are not changing because a major donor or donors is somehow connected to the insurance industry or CDC? Obviously we don't know because CAA will not reveal the identity of it's donors. If they do not get rid of McCleary, this question needs to be squarely addressed.

    Jennie said:

    ...given the breadth and amount of the work our CEO does, we could not hire one person to replace her (if we wanted to, and we don't). Two or three people would be required to replace her experience, skill set, and work product. If you multiply the figures from these surveys times two or three people, then clearly, the Association is getting a bargain.
  4. justinreilly
    Just got the CFIDSlink email. McCleary says the exact same thing again about GET and CBT being modestly beneficial. I don't remember requesting another slap in the face.

    emphasis added


    Too Big to Fail
    Commentary on the PACE Trial

    By K. Kimberly McCleary

    A paper published Feb. 18, 2011 in the Lancet, "Comparison of adaptive pacing therapy, cognitive behavior therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial" compares four treatment approaches in a population of 641 patients in the United Kingdom (U.K.). The study reported modest benefits following a six-month course of cognitive behavioral therapy (CBT) or graded exercise therapy (GET) compared to specialized medical care alone or adaptive pacing therapy, based on improvement in self-reported symptom scores. There were no biological measures taken during the study to correlate with the results. Read our detailed analysis of the study, "Falling Off the PACE."

    News stories have touted more conclusive results than the data support. The authors conclude in the paper, "Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed." However, the public will likely only read headlines like this one, "Talking and exercise could cure M.E. - study." Such tidy conclusions are dangerous. They contribute to dismissive attitudes about CFS and undermine understanding of its severe and life-altering impact. They vastly oversimplify the individual patient's ability to recover his or her health. As a result of reading quips like this, patients may attempt more aggressive regimens than their bodies can withstand and professionals may recommend and/or deliver services that are not tailored to the restrictions imposed by CFS, especially post-exertional relapse. It is understandable that this study, the publication and the resulting media coverage have provoked deep concerns and strong negative reactions from the patient community worldwide and many professionals.

    Structured programs that seek to expand function and reduce symptoms may provide modest benefits when added to standard medical care, but they do not offer complete resolution of symptoms or cure, and the benefits are equivalent to those seen in other studies of chronic illness. Younger, less severely ill and more recently ill individuals may benefit more, according to the effects seen in this select study population and other trials of CBT and GET. But there are risks to these therapies, especially when employed outside the standardized setting of research studies.

    The PACE Trial was guided by hundreds of pages of manuals with heavy scripting for provider-patient interactions and close supervision of all services. Validating the past and present experiences of participants was a core feature of the training provided to those who conducted the services. To compare the outcomes of this trial to what one might find in the real marketplace is a little bit like comparing a visit to Disney's EPCOT Center to a bona fide trip around the world. Even if the services in the trial weren't delivered perfectly, participants were somewhat buffeted against the types of negative encounters in health care settings that are routinely experienced by CFS patients due to persisting myths and misinformation about CFS. That fact alone may have contributed to the modestly positive outcomes, but there was no direct "untreated" comparison group included in the study.

    While the authors state that the funding agencies had no role in the study design or conduct, it is difficult to ignore the U.K. government's strong stake in a good outcome. The study was funded by the country's Medical Research Council, Department of Health and Department for Work and Pensions. It was conducted for the benefit of making or revising health policy for the treatment of CFS by the National Health Service. It came at a cost of some 5 million pounds (British) or $8 million (U.S.). In essence, it was too big to fail to reinforce existing U.K. policy that favors provision of psychological approaches over medical ones.

    The size and scope of this study make it the biggest clinical trial of any kind for CFS, even if you weed out the participants who didn't meet the standard research criteria for CFS and evaluate it on the basis of the 400 subjects who did. It is bound to be cited as the gold standard for years to come, even with its many weaknesses. Subgroup and cost-effectiveness analyses are yet to come. Even so, it's hard to imagine that it was worth $8 million to obtain the data on slim gains achieved in such an artificially constructed setting.

    The CFIDS Association of America is committed to advancing research that leads to the early detection, objective diagnosis and effective treatment of CFS. The scientific and medical communities are obligated to understand the biological roots of CFS so that targeted and effective treatments can be made available to the millions of people around the world whose lives have been derailed by CFS.
  5. justinreilly
    Hi CarolineTAnderson,

    Thanks for your insight into the journalist's world. Can you give us a hint as to how to write letters to journalists who have written poor pieces? I try to be courteous and politely point out the errors and suggest that I would be pleased to help get to the truth etc. But I'm never sure what works. I'm guessing we need to grab their attention in the first line or two, because they don't pay much attention to each email/letter? Or perhaps you think there's no real way of getting through to them?

    Thanks,

    Mark

    Yes. We could really use some advice from Caroline on how to deal with press, congress etc. how do we get the attention we need to get the change we need.
  6. justinreilly
    Guess I have Chronic "No One Gives a Rat's A** Disease", or is it the rest of the world who has that? I'm confused!!! I'm just wondering if that's a murine virus. Does anyone know? ;)

    I'm fed up with the Catch 22 nature of "Sorry, there is no cure or known cause, so we won't bother even looking for one" excuse. Bless WPI for not using that tired old saw and trying to DO something, instead.

    Thanks for letting me blow off some steam, guys. Didn't mean to hijack your blog, Justin. Sorry.

    Please hijack it again. great comment.
  7. cigana
    Hi CarolineTAnderson,

    Thanks for your insight into the journalist's world. Can you give us a hint as to how to write letters to journalists who have written poor pieces? I try to be courteous and politely point out the errors and suggest that I would be pleased to help get to the truth etc. But I'm never sure what works. I'm guessing we need to grab their attention in the first line or two, because they don't pay much attention to each email/letter? Or perhaps you think there's no real way of getting through to them?

    Thanks,

    Mark
  8. carolinetanderson
    Two things 1) I love the name "no one gives a rats a** disease. If CFIDS or some other organization that spoke for the community put out a press release saying they were renaming the disease "no one gives a rats a**" you would get a lot of press :) 2) telling a journalist that their coverage is bias is a big yawn for the journalist. If I could only describe to you how much email a reporter gets saying that you would be blown away. The best example I can use is when I covered the big Tea Party event in Washington last year. For days I received messages saying -- you are so bias you should work for Fox News. -- Next email says -- you are so bias you are nothing but a White House mouthpiece--next email -- the liberal media is so bias, blah, blah, blah -- next email -- You should work for the Tea Party because your writing is so bias in their favor. That would go on for days.
  9. illsince1977
    In light of comments on the press in this thread, I'm reproducing here what I wrote on the PR thread about the NPR piece referenced by Justin above:

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

    Re: Your Piece on 2/18/2011 Psychotherapy And Exercise Look Best To Treat Chronic Fatigue Syndrome

    As a faithful contributor and devoted, daily listener for decades, I am appalled at the bias in your coverage of ME/CFS. I never hear any coverage of this illness and now the first thing I do hear portrays this methodologically flawed study as definitive ("Psychotherapy And Exercise Look Best To Treat Chronic Fatigue Syndrome"? how is this title not an editorial comment by ATC/NPR?). This is beyond outrageous! It is only furthering the perpetration of the massive discrimination against millions of very sick people by our society and government. ATC has stepped way over the line with this one. Are we now to take medical advice from you? Bruce Campbell does not speak for us patients. He is a charlatan who preys on the emotional vulnerability of desperate people if he counsels them. Did Kim McCleary address the fact that the diagnostic criteria used to select the population in this study was so flawed as to not be representative of the illness at all, or did you edit out any critical parts of her statement? If she didn't say so, she should have done. If it was edited out, then what ATC/NPR did is tantamount to giving medical advice. I expected more from ATC. You have just destroyed in one fell swoop any trust I may have had in you as an unbiased news source. Congratulations on a journalistic coup d'etat one listener at a time. CBT and GET are not cures for any illness. Only an idiot would think that people who must rest every minute or two while walking or they may suffer a relapse aren't sick with a physical, biological disease. Tell it like it is. The people doing these studies have an agenda, which is to make sure no research or healthcare agency funds ever get expended finding or treating the real cause of this illness. The longer they can perpetrate the myth that patients just arent doing it right, the longer they can delay any real, useful research. The media has been duped into complicity with this agenda and I am shockingly disappointed that NPR is no exception.




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


    Believe me, I was hopping mad when I wrote that.

    I agree that McCleary in no way, shape or form controlled this interview. She did not further the CAA's stated mission of stimulating research with her statement, in the least. If we patients must deconstruct her statements, as Cort did above, you can be sure the public will not comprehend the issue at all. There are no biomedical research funds because this ilness is a public relations disaster!

    CFS, HOOEY. What other disease has even the word "chronic" in it's name, much less "fatigue"! And I think we all know what the only other commonly known "syndrome" is - AIDS! If you have diabetes, it's not called "chronic diabetes", even though it is a chronic condition; cancer is not "chronic cancer" - people are thought of as "living with" cancer or have "survived" cancer; congestive heart failure/disease is not labelled "chronic congestive heart failure/disease", or autism, or ALS, or ALD, or MS, or Lupus ... I could go on. Let's face it, the only thing "chronic" about this is the chronic lack of concern displayed by our friends and families, the public, the press, the doctors, the scientists and the governments of the world. Sure it's a "syndrome!" , but only because we've been repeatedly told that we have no disease and no symptoms unlike other diseases, all evidence to the contrary.

    Guess I have Chronic "No One Gives a Rat's A** Disease", or is it the rest of the world who has that? I'm confused!!! I'm just wondering if that's a murine virus. Does anyone know? ;)

    I'm fed up with the Catch 22 nature of "Sorry, there is no cure or known cause, so we won't bother even looking for one" excuse. Bless WPI for not using that tired old saw and trying to DO something, instead.

    Thanks for letting me blow off some steam, guys. Didn't mean to hijack your blog, Justin. Sorry.
  10. carolinetanderson