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. justinreilly
    You're going way to far in my opinion Justin when you say Kim's biggest objection to the study was that its not available in the US. Think about it.She's not free to choose what the reporter will print. I'm sure that was just one of Kim's many objections to the study and the reporter chose to print that way. At this point you have no idea at what the CAA's biggest objection to the study is...

    I agree that it would have better if she had stayed on message. She does have a point, though, - she's saying that even if it was effective there's no way it could be used as a treatment in the US.

    I would wait to see what the CAA's complete response to the study is.


    We have CAA's complete response to the study. I posted the link (to CAA's facebook page) and you cite CAA's response yourself below.

    Her point that as you say "even were it effective there's no way it could be used as a treatment in the US" is totally beside the point and just noise distracting from what should have been her point: this study is invalid and a scam.


    And what is the matter with this?

    [text from facebook page]

    I agree its not very exciting....it's not very compelling reading but it is accurate and in my opinion its stating exactly what the CAA needs to say; ie CBT works the same in CFS as it does in other chronic diseases and that it may provide modest benefits...in my opinion -that's completely accurate and is enough to put CBT in its place. You're never going to be able to say that CBT doesn't work to some degree. There are too many studies that show it does - in CFS and in so many disorders. Saying that it just doesn't 'work' to some degree would make the organization look idiotic

    The proper thing to say in my opinion is that it doesn't work particularly well (has modest benefits) and that the effects are no different in CFS than they are in other disorders...That's all you need to do to 'kill' the CBT giant and shove it back into the background where it belongs and that's what that sentence did (in a very dry manner).

    Cort, I think the benign/good version of CBT (helping the patient to adapt to the illness and pace) is good. Obviously, in the PACE trial they were studying evil CBT which tells people they have no physical disease and that they have a neurotic 'fear of movement' which they have to overcome because GET is the only 'therapy' proven to work. Do I even need to explain why GET is not 'modestly beneficial'?

    Mithriel pointed out in a comment to your article, reproduced below, that they defined 'adaptive pacing' as adhering to a schedule which does not allow for sleep and only resting at specific times for a set number of minutes not defining it as the "pacing" we all (including the patient orgs that they cite as supporting it) know and love. They then use the results from 'adaptive pacing' to directly discredit 'pacing' without mentioning there's a difference. They conclude that all "CFS/ME" patients in Britain should be given evil CBT and GET and not pacing. This is evil and extraordinarily destructive.

    From Mithriel:


    There are just a few points for US readers.

    Adaptive pacing is not at all like pacing. It involves keeping a diary and adhering strictly to a tight schedule. No sleep during the day, rests for a specific number of minutes at a certain time for instance. It is very difficult to do and completely ignores how a person is feeling. It is the complete opposite of the pacing that helps patients where you listen to your body. In some ways it is worse for ME than GET as you can do your daily walk when you feel up to it and pace yourself the rest of the time.

    PDW hates pacing and has called this travesty pacing so as to discredit the patient experience. Doctors will now tell us not to listen to our bodies when that was never trialled at all.

    They did not find that CFS and ME responded the same way. They selected first using the Oxford Definition but ME patients are actively excluded at that point as they often have neurological signs so they cannot be selected afterwards. Also, PDW has his own meaning of PEM, it is the soreness you experience when you are deconditioned then exercise. This trial said nothing about neuroimmune disease.

    They had great difficulty recruiting for the trial. Anyone who knew anything about it would not enter. There were complaints about the set up from all the patient organizations except AfME so all members knew of the flaws. They were forced to change the criteria for entry and started asking GPs to send along fibromyalgia patients.

    It was a mess and the results dreadful despite their best efforts to get a positive result, yet they have been reported as wonderful in the UK and will be used against us. The rest of the world may see them as laughable, rightly, but our plight is enormously increased. Our present government has declared war on the disabled, every single person on benefits is to be reassessed and this paper spells disaster for those of us with ME.

    Mithriel
  2. Cort
    I have to say I'm stunned by her comments. If she is indicating by her statement that she thinks these tools (if you can call them that in reference to ME) are one she would like to see used in the USA, all I can say, is God help us.
    .

    She doesn't say that at all - nowhere does she say these are the tools the CAA would like to see used in the US! her statement suggested that they couldn't be used in the US. I agree that's it not a particularly strong statement! but she's not advocating for their use.

    Justin, while I agree that the CAA's response was underwhelming in some areas it does not say use CBT and GET as your title implies.
  3. justinreilly
    Cort-

    you're talking about the written NPR article. The actual audio is problematic.

    I have changed the title of the post and the wording in the text to reflect both of her objections to the PACE study and the fact that i don't know which is her biggest objection.
  4. Cort
    pamb- McCleary said the same thing in the NPR interview. The audio and a written piece, which differs a little, are here:

    http://www.wbur.org/npr/133865482/psychotherapy-and-exercise-look-best-to-treat-chronic-fatigue-syndrome

    PR thread on NPR interview:

    http://forums.aboutmecfs.org/showthread.php?10115-NPR-piece-on-Lancet-article-re-PACE-study


    I don't have a problem with this - she simply lays out the reason why CBT is offensive.
  5. Cort
    I don't see any problem with this

    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.

    I agree its not very exciting....it's not very compelling reading but it is accurate and in my opinion its stating exactly what the CAA needs to say; ie CBT works the same in CFS as it does in other chronic diseases and that it may provide modest benefits...in my opinion -that's completely accurate and is enough to put CBT in its place. You're never going to be able to say that CBT doesn't work to some degree. There are too many studies that show it does - in CFS and in so many disorders. Saying that it just doesn't 'work' to some degree would make the organization look idiotic

    The proper thing to say in my opinion is that it doesn't work particularly well (has modest benefits) and that the effects are no different in CFS than they are in other disorders...That's all you need to do to 'kill' the CBT giant and shove it back into the background where it belongs and that's what that sentence did (in a very dry manner).

    However I agree with you about the rest of the CAA's response; it was decidedly underwhelming and I would have hoped for more. I would have emphasized the very modest benefits of the study....that is the way to put CBT in its proper place and they missed that by a wide margin. The article was too long and the key points were buried to some extent.

    They should also, in my opinion, contextualized it better - noted that contrary to other diseases CBT/GET are regarded as the only suitable therapies for CFS in many places - which suggests that CFS is a behavioral disorder and hammered on the point that this study proves it is not.
  6. justinreilly
    Yes, McClearys quotes in the CNN article are pathetic. Is it possible she was experiencing brain fog at the time? Or if these are actually her quotes, then perhaps she could use some CBT herself to eliminate some inappropriate beliefs about this illness and its treatment. Justin, I may have misunderstood--are you suggesting that she be replaced with George W?

    The decider? well i didn't mean that, but as an interim measure.. no, no never mind.

    unforch, she can't chalk it up to brain fog on account of her non-pwME status. That is one advantage of having ME; I just blame everything on it. (btw- i heard it's pretty awesome to have tourette's too: you can just curse out your boss and then be like "sorry, tourette's. please refer to ADA if you are thinking of not promoting me") ;)
  7. justinreilly
    pamb- McCleary said the same thing in the NPR interview. The audio and a written piece, which differs a little, are here:

    http://www.wbur.org/npr/133865482/psychotherapy-and-exercise-look-best-to-treat-chronic-fatigue-syndrome

    PR thread on NPR interview:

    http://forums.aboutmecfs.org/showthread.php?10115-NPR-piece-on-Lancet-article-re-PACE-study


    NPR piece on Lancet article re: PACE study

    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.
  8. dominique
    I have to say I'm stunned by her comments. If she is indicating by her statement that she thinks these tools (if you can call them that in reference to ME) are one she would like to see used in the USA, all I can say, is God help us.

    I have read horrible stories about the abuses and the damage being done to those in the UK as a result of these and other treatments.

    I remember a time when the CFIDS Assoc of America didn't just look at research but at what was best for the patients who supported the organization. What a sad essay on what used to be a great organization.
  9. silicon
    Yes, McCleary’s quotes in the CNN article are pathetic. Is it possible she was experiencing brain fog at the time? Or if these are actually her quotes, then perhaps she could use some CBT herself to eliminate some inappropriate beliefs about this illness and its treatment. Justin, I may have misunderstood--are you suggesting that she be replaced with George W?
  10. pamb
    As I am not American and not really privy to the whole history of Kim McCleary, I have never commented on her role before.

    However, this is just too much and I must say 'hear, hear' regarding justinreilly's comments. Unless Ms. McCleary was badly misquoted, her comments in this story should be enough to get her fired. Even I could have come up with the four points Justin mentions, and for her not to take the opportunity to clearly and strongly set the record straight on the PACE trials is a complete failure to perform her duties adequately.

    If she is unable to speak for the community she should step down.