Dr Bill Reeves (CDC CFS program) and CBT

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Oct 2, 2009.

  1. QuayMan

    QuayMan Member

    (From Co-Cure)

    I thought I would draw attention to the following quote by Dr. Bill Reeves
    from the minutes of the CFSAC meeting, May 2009 (pp.60)

    "The other problem is that in studies that we've recently published, a large
    proportion of
    people who have CFS have serious psychiatric overlays. Those need to be
    as well. But that isn't saying that that is the cause of your illness; that
    is saying that that
    is something that needs to be taken care of because it's there with your
    illness. You
    cannot ignore it. There is unhappiness with CBT because CBT is "all in your
    Many of you knew me when I was walking on a crutch with a ruptured
    tendon and a year's worth of surgery. A huge part of the rehabilitation
    therapy was CBT
    to help me understand what was happening, understand how I could cope, and
    understand what was expected."

    The first point is that the empirical definition has increased the
    percentage of people with psychiatric issues (many of them may not have CFS
    as normally defined at all).

    But the main issue I want to point is that I do not believe Dr Bill Reeves
    had CBT for his ruptured quadriceps tendon.

    CBT is not something that is normally offered for a problem like that.

    And I'm not sure Dr Reeves would have gone to regular sessions with a
    psychologist (on top of time spent with a physical

    If it is the case that he has not gone for CBT, he is either being
    misleading or, and I think this is more likely, he does not understand what
    CBT is.

    CBT is designed for maladaptive beliefs and behaviours. It if involves a
    lot of homework where you have to keep diaries. Other psychologists can
    probably describe it better than me but one can give coping skills training
    and education on the condition without giving CBT.

    Dr Reeves' understanding of CBT is important given the CBT want to draw up
    management and treatment guidelines including guidelines which have an
    international consensus (getting a consensus on management guideliens would
    seem very hard to do unless you don't pay attention to the people who
    propose a pacing model or an envelope theory model for how to manage CFS -
    these are very different from the graded exercise model (which is the basis
    of the CBT model for the illness).

    As I pointed out before, at this meeting, Dr Reeves said:

    "CBT GET. We are in the process of planning a cognitive behavioral therapy
    (CBT) and graded exercise (GET) trial as part of the provider registry
    in Macon. We're going to do that in collaboration with the providers in
    with Mercer Medical School, with the U.K. group, and with Mayo Clinic.
    Obviously, CBT GET is not the cure for everybody. Nobody knows for how many
    it is. It probably applies to a subset."

    What he is saying is that CBT GET is a cure for some people with CFS. Most
    people in the field don't talk as if CBT is a cure for some percentage of
    people with CFS. Two of the few that do are Peter White and Gijs

    I'm appending a selection of other quotes from the meeting by Dr Bill Reeves
    on the issue of CBT, GET, Peter White and the situation in the UK.


    CFS Program Five-Year Goals


    "International Workshop - Research, Clinical, and Pediatric Definitions of
    CFS - I
    would like to try to get together by the winter of 2009. I know the IACFS/ME
    interested in this. We want to include countries such as UK that have CFS
    completely integrated into their healthcare system."
    (TK: that's CBT/GET and very little else (the NICE guidelines recommend
    against other treatments and against most testing (except basic testing to
    rule out other conditions))


    Dr. Oleske (Chair of the CFSAC): I'm going to open it up to questions from
    the group. The only thing I want to say, Bill, is I was interested in your
    comments about the international community and how much
    effort will be put into that. While I have no problem with international
    collaborations, I
    have to say that I think there are times when the domestic agenda suffers at
    the behest
    of an international agenda. I just hope that we don't dilute the
    concentration on the US.
    I want to ask you to comment about that.

    Dr. Reeves: An excellent comment. Our focus is obviously on the United
    There are three important reasons for international collaboration. One of
    them I alluded
    to. There are countries that have put CFS evaluation, diagnosis, and
    management into
    their national health systems. The UK is one of those. An international
    provides the chance to learn from another government that has embraced this
    perhaps not to the extent that everybody would like-but is trying to work
    with it as a
    national health service.


    Ms. Artman (member of CFSAC committee): I want to stay on the international
    theme. Before this meeting, I sent out
    a query to those who participated in the CDC stakeholder meeting to find out
    what they
    had to say, because I was ill and couldn't attend. Just about everyone came
    back with
    comments about either Simon Wesley or Peter White treating this as a purely
    psychiatric disorder and not as a multi-system complex disorder. There's a
    that in working with the UK, we are adopting that this is a purely
    psychiatric disorder.

    This is a big patient perception issue with the CDC. It's not what you're
    actually doing;
    it's what we perceive that you're doing. You need to really place an
    emphasis on how
    you want the patient community to view what the CDC is doing.

    Japan is doing such remarkable research, I would hope that whatever you do,
    you pull
    the Japanese in. I love what they call it: burnout syndrome. Their whole
    concept is that
    you do too much and get sick, not as the US tends to think, that we're
    malingerers. I
    just want to ask you so it's on the record out there for everyone-what is
    the CDC's take
    on this? Do you see it as a purely psychiatric illness?

    Dr. Reeves: Of course it is not. One of the very first things that I
    highlighted out of the
    stakeholder meeting is that communication has not been optimal. Peter White,
    psychiatrist that we work with at Emory, does not look upon CFS as a
    illness. What they are extremely interested in at Emory are the neurologic
    and brain
    pathways that mediate this. That is one of the things that Peter White
    really added to
    the peer review-he is an expert on autonomic nervous system function. The
    fact that
    certain investigators have a reputation in a certain component of the
    community for
    thinking that CFS is all in the patient's head is a result of the CDC's
    problems with

    (TK: I believe most people would question why a major body like the CDC, if
    it needed a person who was an expert in the autonomic nervous system for a
    peer review, would bring in Peter White to do it! And regarding the last
    sentence, people like Peter White have a "reputation" for what they say and
    do - it's not simply because people picked them up incorrectly)


    Dr Bill Reeves: "The collaboration with Peter White is largely because Peter
    White came to us when the
    national health service in the UK was trying to design its program and
    recommendations about what the health service in the UK should do. We've
    with them as far as our ideas and our expertise, and we collaborate with Dr.
    White on
    the PACE trial. He's an unusually intelligent individual-you've read some of
    comments on some of our articles-whom we enjoy sparring with. He is an
    expert on
    autonomic nervous system function and he's highly instrumental in all of the
    both with patients with the government and with physicians, in trying to put
    given the current state of knowledge, a national program."

    --Another quote--

    "Dr. Miller (from the CDC): I think that my goal in terms of intervention is
    that we get to a point
    sometime during the five-year plan where we're ready with the defined study
    we implement some intervention that shows promise, and we're to measure the
    of that intervention.

    Dr. Reeves: We talked about a collaboration with Mayo on a CBT/GEBM
    That's two years out, maybe more."
  2. Spinetti

    Spinetti New Member

    In regards to CBT, again, Reeves is mixing up apples and oranges – and he probably well knows it. You ask him about a rotten apple, and he shows you a shiny fresh orange.

    Traditional cognitive behavioral therapy has been shown to be of value in helping people cope with physical illness and injury. It never claims to be a substitute for medical treatment.

    In the case of ME/CFS (Canadian definition - CFS is now meaningless thanks to the CDC), appropriate CBT would involve learning how to cope with a serious chronic physical disease, which is widely disbelieved and dismissed as psychological. Techniques, such as pacing, that have been shown to be effective and can cause no harm, would be stressed.

    The therapist or counsellor would emphasize the physical nature of the disease and confirm it is not the patient, or his/her "illness beliefs," that is at fault.

    UK-style CBT/GET is a different kettle of fish entirely. It is offered in lieu of appropriate medical treatment and places the burden on the patient to correct his/her thinking that ME/CFS is primarily a physical problem.

    It encourages patients to embark on an exercise program which is likely to make them sicker.

    I doubt very much if Dr. Reeves would have accepted UK-style CBT is place of surgery for his torn tendon.

    [This Message was Edited on 10/03/2009]
  3. sascha

    sascha Member

    thank you very much. is Reeves softening his rhetoric, trying to portray himself as a kinder, gentler controller of CDC research on cfids?? so he is listening to criticism from PWCs, it seems to some extent. at least in terms of defending himself

    he, and Wesseley (sp?) in England, do need to incorporate actual physiological findings from people like Cheney and Montoya,and i know there are others. we need an inclusive approach to uncovering all the dynamics at work here, is my opinion.

    again, thank you so much for what you contribute to the dialogue- Sascha

  4. QuayMan

    QuayMan Member

    RE: "UK-style CBT/GET is a different kettle of fish entirely."

    When people talk about evidence-based CBT, this is what they are talking about.

    And it's not just in the UK where studies have been produced using CBT based on GET.

    If you look at the last International CFS Study group that the CDC put together, all or virtually all of the authors would have recommend "UK-style CBT/GET"

    Without action, these will be appearing at the treatment on the CDC website soon.

    And they will use them for their education programmes to doctors and other professionals.

    And when they are advising the TV/Movie industry on CFS (they say they are starting to do this), this will be what they'll be recommending.
  5. quilp

    quilp New Member

    Wessely will never change his stance. His whole career has been predicated on 'treating' M.E with his belief that, although an organic basis is responsible for initiating the illness, we as patients, are responsible for perpetuating it.

    There can be few in the medical profession that have done so much harm, to so many, over such a long period of time, with a well rewarded career, and would you believe, a gold medal for his 'success in treating this illness'.

    Don't bother passing me the vomit bag, my gut related issues have already beaten you to it.....

    Kind regards, Mark
  6. jasminetee

    jasminetee Member

    says, "The other problem is that in studies that we've recently published, a large
    proportion of
    people who have CFS have serious psychiatric overlays. Those need to be
    as well. But that isn't saying that that is the cause of your illness; that
    is saying that that
    is something that needs to be taken care of because it's there with your
    illness. You
    cannot ignore it."

    Oh really Dr. Reeves? Is that the same kind of recommendation you also give to people who have AIDS or cancer? I highly doubt it~

    If anyone knows of any quotes from Dr. Reeves or any other Dr. that states that there are "serious psychiatric overlays" in other illnesses that interfere with healing, please post them here - I wanna see 'em.

    So do these "serious psychiatric overlays" get in the way of people getting better? Is that what he's saying?? Puhleeze.

    [This Message was Edited on 10/03/2009]
  7. AuntTammie

    AuntTammie New Member

    nice explanation of the differences between real CBT and the UK version....I absolutely agree with you

    I have read case notes that were written by a UK therapist about several sessions done with a CFS patient, and the notes included some transcripts of what was said by the therapist and patient...... the therapist just kept pushing the patient to change his "abnormal illness beliefs" and accept that his CFS was completely psychological....it was a horrible, horrible exp of counseling

    even if the person really did have a mental illness (which obviously CFS is NOT), the counseling he was given would have absolutely appalled me - it was so completely in violation of what I was trained to do as a counselor- he was not working with the client, was not gaining his trust, was not doing anything at all helpful and was in fact quite harmful in a lot of ways
  8. AuntTammie

    AuntTammie New Member

    thanks for posting this....nice job of really picking out some of the stuff that clearly shows how bad the CDC's plan and Reeves are.....I listened to much of the mtg, but was getting so upset I had to shut it off or leave the room for awhile, so although I got the gist of it, I am glad to read this, too (well, glad might be the wrong word, considering how disturbing it is.....appreciative of your efforts to keep us informed would be a better way to say it, I guess)

    the efforts to inc the UK and to say that they have done such a great job of integrating CFS into their health care system is so scary.....the only way that things could be worse for ME/CFS patients in the US is if we adapt the UK's ideas into our system even more so than they already are....I swear I am about ready to move to japan : )
  9. beanier

    beanier Member

    "I have read case notes that were written by a UK therapist about several sessions done with a CFS patient, and the notes included some transcripts of what was said by the therapist and patient...... the therapist just kept pushing the patient to change his "abnormal illness beliefs" and accept that his CFS was completely psychological....it was a horrible, horrible exp of counseling"

    This is interesting, could I ask if you happen to remember where you read it?

  10. AuntTammie

    AuntTammie New Member

    I will try to find it again for you....unfortunately I have so many things saved and am so bad at organization (another thing that I was great at pre-ME and am no longer) that I am not entirely sure if I will be able to find it.....if I do, I'll start another thread with it for you
  11. QuayMan

    QuayMan Member

  12. jasminetee

    jasminetee Member

    I'm not disputing that illness can cause psychiatric problems. I'm against psychologizing CFS as Dr. Reeves is constantly doing. Are you aware of who Dr. Reeves is?

    Also, thanks for your reply posts but what I'm asking for is quotes from doctors stating that patients with AIDS or Cancer or Epilepsy etc... need CBT or else their psychiatric illnesses will interfere with their healing.


    [This Message was Edited on 10/06/2009]
  13. jasminetee

    jasminetee Member

    I agree with your point as well.

  14. skeptik2

    skeptik2 Member

    Let's start rewriting out remarks to the CFSAC...

    Reeves OUT, NIH's retrovirus department IN...

  15. QuayMan

    QuayMan Member

    (From Co-Cure)

    From: http://www.nature.com/news/2009/091008/full/news.2009.983.html

    William Reeves, principal investigator for the Centers for Disease Control
    and Prevention (CDC)'s CFS public health research programme, says the
    findings are "unexpected and surprising" and that it is "almost unheard of
    to find an association of this magnitude between an infectious agent and a
    well-defined chronic disease, much less an illness like CFS"

    What does he mean "much less an illness like CFS". CFS is much more like a
    chronic viral disease than most chronic diseases - it is often clearly
    triggered by an infection and 'flu-like symptoms are part of the complex.

    Why is he heading a program based in the viral section of the CDC if he has
    this attitude?

    Quote:"But Reeves is cautious. "Until the work is independently verified,
    the report represents a single pilot study," he says. According to Reeves,
    the CDC is already trying to replicate these findings. He also notes that
    CFS is a heterogeneous disease and likely arises from a combination of many

    Normally, I would be pleased to hear that the CDC was doing viral research
    on the illness.

    However, if they use the "empirical" definition, I believe the percentage of
    patients with CFS will be much lower than the percentage of patients who
    satisfy a "proper" defintion for CFS.

    Tom Kindlon

    Don't support the Reeves/empirical definition/criteria for CFS?
    Sign the petition at: http://CFSdefinitionpetition.notlong.com
  16. jasminetee

    jasminetee Member

    Thanks for posting that. I was wondering the same thing and no, I do not support the Reeves empirical definition criteria for CFS.
  17. QuayMan

    QuayMan Member

    Response to Reeves and Jones - Gurli Bagnall - October 9th, 2009

    Gurli Bagnall

  18. jasminetee

    jasminetee Member

    Oh that is rich! Oh I love it! That was so funny and so true and dang if I didn't have to look up "allostatic" for myself just now in Webster's and it is not a real word. All this time I thought it was as I've either read that very paragraph before or they've used it elsewhere. OMG! lol

    Thanks so much for the link Quayman.
    [This Message was Edited on 10/09/2009]
  19. QuayMan

    QuayMan Member

    (From Co-Cure)

    Another Bill Reeves quote:



    "It is almost unheard of to find an association of this magnitude in any
    study of an infectious agent and a well-defined disease, much less an
    [ill-defined] illness like chronic fatigue syndrome," he said in an e-mail.
    It is extremely difficult to prove causation with a ubiquitous virus like
    XMRV, and it "is even more difficult in the case of CFS, which represents a
    clinically and epidemiologically complex illness," he said.


    This quote is similar to the last quote so the same points apply except that
    he is now saying that XMRV is a "ubiquitous virus".

    Some viruses could be said to be "ubiquitous" e.g. most of the adult
    population will have some sort of antibodies to EBV.

    However, the XMRV virus was only identified in 8 of 218 (3.7%) healthy
    controls (compared to 68 of 101 patients (67%) of the patients).

    The researchers also did some extra experiments, summarised in plain English

    "Testing the white blood cells from thirty CFS patients showed that 63% (19
    people) of the samples tested showed viral proteins. Tests on samples from
    five healthy controls did not show any viral proteins.

    "Overall, samples from people with CFS were 54 times as likely to contain
    viral sequences as samples from healthy controls.

    "The researchers found that XMRV found in the white blood cells of CFS
    patients could be transmitted to prostate cancer cells when grown together
    in the laboratory. In 10 out of 12 people with CFS (83%), fluid taken from
    their blood samples could also infect the prostate cancer cells in the
    laboratory. Similar results were found when uninfected white blood cells
    were exposed to this fluid. Fluid from the blood samples of twelve healthy
    controls did not infect the prostate cancer cells.

    "The researchers found that half (nine out of 18) of CFS patients carrying
    XMRV DNA had antibodies against a similar virus, while none of the seven
    healthy controls tested showed an antibody response. This suggested that
    half of the CFS patients had had an immune response to the XMRV."


    To summarise, these experiments (admittedly using smaller sample sizes)
    again don't show XMRV to be ubiquitous like Bill Reeves claims.

    Tom Kindlon
  20. skeptik2

    skeptik2 Member

    I claim that Reeves had better keep his mouth shut, or he's going
    to find himself out of that job at Emory!