Dr. Breus irresponsibly hyping PACE trial as new and hopeful path to recovery

Dr. Breus was hyping the PACE trial as new hope for us in the March issue of Psychology Today. I just saw it and really couldn’t and didn’t want to put much energy into this pretty much un-reserached and irresponsible article. But I did muster the following comment, for what it’s worth:

I am concerned that Psychology Today has given Dr. Breus a platform to disseminate so much misinformation. First of all, the PACE trial was published more than two years ago. Hardly new research. But not only is Dr. Breus behind in the timeline, he also does not seem to know what pretty much all experts on this disease know and will opine, i.e., that the PACE trial is an embarrassing piece of “research” with so many flaws as to render it not only useless, but also dangerous. I won’t go into details here. Everybody in the field who knows just a little bit about the illness is very familiar with those (although Dr. Breus does not seem to be). And the PACE trial is about to be debunked by US scientist who really know what they are doing and who do not have an agenda, unlike the “researchers” in the PACE trial. But Psychology Today should really put better quality-control measures into place. Articles like this one do some real harm to a large and very sick patient population. They call every journal’s credibility into question that enables the perpetuation of false information.

And Dr. Breus, why not write about something you know a little bit about? You have a responsibility here, you know. Recovery is extremely rare in this illness. Most patients who claim to have recovered never had this disease in the first place. And exercise makes most patients sicker, often dramatically and irreversibly so. CBT can be helpful in all chronic illnesses. Nothing special here. Why is a sleep expert–a PhD, not an MD–writing about a very complex neuro-immune disease?

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11 Responses to Dr. Breus irresponsibly hyping PACE trial as new and hopeful path to recovery

  1. Justinreilly@hotmail.com says:

    Thanks for highlighting this article. I have left a comment and emailed the author, which I urge everyone to do. You can email him from the following webpage:

    http://www.psychologytoday.com/experts/michael-j-breus-phd

    Below is my email to him:

    Re: your article of March 7 2013,
    “Exercise and CBT Can Help Chronic Fatigue”,

    http://www.psychologytoday.com/blog/sleep-newzzz/201303/exercise-and-cbt-can-help-chronic-fatigue

    Sorry doc, but you have been hoodwinked by a small group of insurance lobbyists, who were trained as psychiatrists and pose as scientists, namely the authors of this study. I have to agree with all the other posters that this study has been roundly discredited. every patient survey done, some with patient numbers in the thousands, as well as several studies with much better methodology have proven that GET is the most dangerous and least helpful of any “therapy” for MEcfs.

    I implore you to look into this situation and write a new article with the facts. Many many ME patients have been severely harmed by GET. I am at your service to discuss the situation and direct you to the relevant studies and critiques if you chose to look into this matter. Thank you very much for your consideration.

    • good comment, justin. you are, of course, correct, that PACE has already been proven to be wrong. many times. can’t really say more about why i said what i said the way i did, but i am glad you made the point.

      also glad that you found a more conciliatory tone. i get so tired of people who have a lot of responsibility–b/c of their platform–not coming close to living up to that. it’s like, “oh, here is another opportunity to get my name out there. i don’t really understand the disease i am supposed to write about, but what the heck. it’s easy PR. it’s gonna hurt patients? well, that can’t be helped.” and i am really tired of Psychology Today putting out so much bad information. i realize psychology is a soft “science.” but again, some integrity every once in a while would be nice. just a thought.

  2. Gretchen Thompson says:

    This type of “therapy” almost killed me. I have never recovered from this.
    Thanks for posting about this article.
    Gretchen thompson

  3. Anonymous says:

    Dr Chia “You do not exercise with enteroviruses when you do that the virus multiplies in the muscles and travels backward through the nerves into the spinal cord and kill the spinal cord” So GET is disastrous.

  4. K says:

    Hi, have you got a link to any info about the US scientists “debunking” the PACE trial, i’d love to read into that! Sounds hopeful. Thanks, Kx

  5. Kathy D. says:

    I can’t even read much about this as I get so aggravated that my ME/CFS gets worse. I sit here, having written something over the last few days that wiped me out and caused total exhaustion and muscle pain. And I forgot a friend was out of town when I had helped with his travel arrangements and just read something about his trip 20 minutes before I asked a friend if she’d seen him today!!! I told her I was completely exhausted.
    I think friends are going to think I have dementia when it’s just “run-of-the-mill” ME/CFS memory loss that happens when we’re exhausted (not fatigued — gosh, no!) and can barely walk from room to room in our residences. I can’t go outside or do anything in this shape, barely reading.
    So, when I see this hokum it’s just ridiculous. Let him PACE himself and regulate his behavior.
    I’m so done with this.

  6. Pingback: Dr. Breus playing into the hands of insurers wrongfully denying disability claims | Thoughts About M.E.

  7. I am hesitant to assume “The Sleep Doctor’s” motives in providing this information to be anything but selfless, but when reading the info about the PACE study, I noticed that it suggested CFS “is a common disorder with as many as 1 in 40 and 1 in 250″? I’ve never come across those numbers in my research. The main point that is disconcerting to me is that the study referenced (20%, was it?) no longer living with CFS without following up with them at a later date. Quoting PACE study as follows:
    “It is important to note that researchers consider recovery to be confined to what they refer to as the “current episode of the illness.” Researchers considered patients recovered when their symptoms disappeared. But their results do not predict whether the symptoms will re-appear over time. Researchers acknowledge the need for further study to determine if long-term recovery is possible for patients with chronic fatigue using these therapies.”
    Reading this brought back memories of a program I participated in and the pressure to agree to certain outcomes that were not demonstrated.
    I am disappointed Psychology Today would find this article news worthy.
    Thank you.

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