CDC & CAA Push NICE Guidelines; We Need to Fight Back!

Discussion in 'Fibromyalgia Main Forum' started by mezombie, May 31, 2008.

  1. mezombie

    mezombie Member

    The CDC recently added the UK's NICE Guidelines as treatment advice on its CFS webpage. I caught this and passed the information on to Mary Schweitzer. Mary used it for her testimony to the CFSAC on May 6th (I'm not well enough to attend these meetings).

    I've posted her testimony below. Please consider challenging these "treatment guidelines". I've posted some suggestions on this thread.



    Responses to the NICE Guidelines for M.E. and CFS By Patient Organizations In the U.K.

    Presented to the
    Chronic Fatigue Syndrome Advisory Committee
    Department of Health and Human Services
    U.S. Federal Government
    Washington, D.C.
    May 6, 2008

    Mary M. Schweitzer, Ph.D.

    Recently, the U.S. Centers for Disease Control and
    Prevention (CDC) have added a new item to their
    website for medical professionals. The addition was
    made on the page marked “Treatment Options and
    Management Plans,” at the following website:

    The paragraph praises the “NICE” guidelines and
    offers links to the British public health website where
    they can be found.

    [Text posted on CDC's CFS website]

    NICE Treatment Guidelines -- NEW!

    The National Institute for Health and Clinical
    Excellence in the UK developed a new guideline to
    improve the diagnosis and management of chronic
    fatigue syndrome (CFS) and myalgic encephalo-
    myelitis (or encephalopathy) (ME) in adults and
    children. The guideline provides recommendations to
    help diagnose and manage the condition, aimed at
    maintaining, and if possible, gradually extending an
    individual’s physical capacity.

    It also highlights the importance of shared
    decision-making between health professionals and
    people with CFS/ME, providing therapies suitable to
    the individual, and the individual’s right to refuse or
    withdraw from any part of their treatment plan
    without it affecting future care. Read more about the
    guidelines :

    or download the entire document.


    The statement from NHS in Britain suggests that the
    guidelines were created and are being implemented
    with the cooperation of patients. Nothing could be
    further from the truth. In this packet you will find
    formal responses from a number of British patient
    organizations asking for changes that have yet to
    take place.

    The greatest concern in Britain – and on the
    Continent, where other countries with socialized
    medicine are trying to adopt the NICE guidelines – is
    that despite the fact that European nations are using
    ICD-10, where both M.E. and CFS are coded in the
    chapter on neurology, not psychology, the guidelines
    have not directed anyone towards a neurological
    workup. Rather, they have been used to emphasize
    the favorite programs of British psychiatrists,
    Cognitive Behaviour Therapy (CBT) and Graded
    Exercise Therapy (GET). You will read about the
    problems with these programs in the patient

    If the U.S. is going to tacitly adopt, or praise, or
    encourage insurance companies to work with,
    guidelines created for socialized medicine, the public
    should at least be made aware of it. Very few
    patients with a “CFS” diagnosis ever get approved for
    disability in the United States; consequently, very
    few are on Medicare, our own public health. The
    consequences of guidelines suggested by the CDC
    are felt in the private sector, where patients may be
    denied private disability, or reimbursement for
    testing that the CDC has insisted is irrelevant for the
    disease. Please read these statements.

    Thank you.

    The packet contained the following:

    1. The summary presentation to the Health Select
    Committee on NICE, signed by THE M.E.
    CONSORTIUM (NICE stakeholder-ME/CFS
    Guideline, November 2006), SOUTH WEST
    SUPPORT GROUP for young people with long term
    illnesses and their parents, M.E.POSITIVE –EAST

    2. The Doris Jones "Executive Summary" of March

    3. Response from the 25% group, from their website

    4. Simon Lawrence's response, from the 25% website

    5. Charles Shepherd's response

    6. A statement by Jane Colby about how the NICE
    guidelines are being used against students with

    6. The British Psychological Society critique

    7. The letter from Malcolm Hooper, Eileen Marshall,
    and Margaret Williams to the BJM

    8. NICE guidelines: Garbage In, Gabage Out, by
    Margaret Wiliams

    9. Deliberate Deceit or Inexcusable Ignorance, by
    Margaret Williams

    Mary Schweitzer

    [This Message was Edited on 06/05/2008]
  2. Spinetti

    Spinetti New Member

    This link on the CDC's website looks benign enough, but opens the door in the US to all sorts of harm being done to ME/CFS patients in the name of "treatment."

    Mary Schweitzer has ably stated the potential negative consequences above. One hopes that the CFSAC will heed her testimony, and this pernicious stealth endorsement of the NICE guidelines will be removed from the CDC site.

    Thanks to Mary Schweitzer for bringing this important issue before the Committee and to mezombie for posting her testimony here!


    [This Message was Edited on 06/01/2008]
    [This Message was Edited on 06/01/2008]
  3. Khalyal

    Khalyal New Member

    Thank you for posting this, Z. It really is a huge foot in the door toward CBT and GET for all.
  4. simpsons

    simpsons Member

    This just goes to show how the treatment of UK patients under the nice guidelines is important for all to fight as this is now creeping into the USA.

    Not only is this dreadful guideline damaging uk patients chances of proper treatment, but the usa and europe are now starting to try to introduce the not so nice guidelines.

    Dr's read that the treatment is cbt and get and form the opinion that ME/cfs is mental health, and a fitness issue.

    My local health authority refuses to treat anyone medically and only sticks to the nice guidelines. so no treatment is offered except cbt and get.

    We must unite otherwise the dreadful treatment that uk patients get will become the norm elsewhere.

    In the uk the oneclick group have started to appeal against the nice guidelines in the form of a judicial review. Bruce carruthers is to be the expert witness.

    Now that these dreaded nice guidelines are being endorsed by american government it is time for the americans to do the same or else america will end up with the same problems that the uk have with what we all know to be dreadful treatment.

    [This Message was Edited on 06/03/2008]
  5. mezombie

    mezombie Member

    We just continue to backslide here.

    To make matters worse, the CFIDS Association of America (CAA) is actively recruiting patients who are using GET or pacing as part of their treatment for media interviews.

    If you've tried GET and it has hurt you, consider contacting the CAA at and volunteering for an interview. Likewise, if you feel pacing is helping you, consider volunteering. This may at least counter any media coverage of GET as a positive treatment.

    The CAA is still under contract with the CDC for its "Awareness Campaign", which means a lot of the CDC's psychobabble is still being distributed by a so-called patient advocacy organization.

    If you're up to it, contact your local media (contact information is often available on the web) and offer to do an interview on your own, without CAA/CDC "help".

    [This Message was Edited on 06/04/2008]
  6. Spinetti

    Spinetti New Member

    What's a patient to think? Why is the CAA even talking about GET except to advise patients and doctors that any benefits are far outweighed by the great potential for harm?

    GET was thoroughly discussed and discredited in the 2003 Canadian Consensus guidelines and Dr. Charles Sheperd's 2001 study.

    And why has the CFIDS Association of America partnered up with the CDC while the CDC in its CFS Glossary defines CFIDS as

    "A synonym for chronic fatigue syndrome used by some patients and physicians. It should be stressed, however, that no immune dysfunction or aberration has been persuasively linked to chronic fatigue syndrome"

    I would think these guys could, at least, get their names straight.

    Thank you, Mezombie, for your information and advice!

    Thank you, Simpsons, for your comments!

    spinetti (a bit miffed and confused at the moment)
  7. Khalyal

    Khalyal New Member

    The CAA has inextricable links to the CDC. The CAA Scientific Director, Suzanne Vernon, was recruited straight out of the CDC. The CAA has been in partnership with the CDC since the year 2000 in a joint "education" (or misinformation) program. The CAA receives funds from the CDC for continuing this project.

    Right, with friends like these...

  8. Spinetti

    Spinetti New Member

    For untangling another bit of the web for me.

    It never ceases to amaze, vex, and perplex me that with all the other things we have to contend with, we have faux amis, as well!

    Best wishes,

  9. jasminetee

    jasminetee Member

    I am very concerned about this backsliding. I think we're in trouble. They know the truth, they're doing this to harm patients and they know it. They can use these guidelines to force patients to either exercise and go to CBT classes or take away their disability. They seem to have all the power and we have none and the doctors will comply because they'll think CBT and GET really work from reading all the propaganda that's being put out by these so-called reputable sources.

    I feel like we're in for very bad times ahead. It would be one thing if they were just ignorant, but we know by now they're not. It doesn't seem like there's anything we can do now but we have to keep trying to fight it. What else can we do?

    [This Message was Edited on 06/04/2008]
  10. mezombie

    mezombie Member

    Thanks for the replies, Spinetti, Khalyal, Simpsons, and Teejkay.

    I think the CAA needs to hear from us! Remind them of the doctors who told you to exercise, and what happened when you did. There are some excellent articles on the NICE Guidelines posted at and Perhaps we can email some links with brief cover letters to to let them know what we, as Americans, think of these "treatment guidelines".

    [This Message was Edited on 06/04/2008]
  11. Lichu3

    Lichu3 New Member

    From what I understand, the CAA will be cutting some ties from the CDC at the end of this year, especially in regards to physician/ health professional education. This is based on Kim McCleary (CAA director) comments in 11/2007 in D.C. and from people closer to the action than I. Reasons being that the CDC agenda is different from the CAA. I take this to be a good move.

    However, recent comments by Susan Vernon on the CAA website and this post still make me concern what the CAA's agenda is. I agree with Mezombie we should write and comment on this connection between the CDC and CAA.
  12. Didoe

    Didoe New Member

    what my nasty employer always tells me, "It's not personal"
    Nothing for those on top, in control and in charge, is 'personal' it is, always, about MONEY.
  13. spacee

    spacee Member

    Dr. Steve Straus was over Infectious Disease at the NIH and did us harm by promoting the psycho stuff. We did a write in to get him removed and evidently it worked. The NIH put him in charge of CAM (Complementary and Alternative Medicine) and he set up several centers across the US. Several were in the Psychology/psychiatric department of Medical Schools.

    The Alternative and Holistic Medical people were up in arms because Dr. Straus got the appointment without a background whatsoever in complementary/alternative medicine. But that didn't change things.

    So...we have a woman who is married with two children and a husband. And she has FM. She has it so badly she wants her husband to divorce her and take the kids and "have a life".

    She goes to Duke and gets GBT. And as Duke says, "She came here a patient and she left here a person".

    Oh Brother. Did that ever hurt our cause. But we must fight on and let our voices be heard. Some will always believe the psychological part because that is their mindset. But others will hear us and believe.

  14. Marta608

    Marta608 Member

    Will they ever get it right???????????

  15. mezombie

    mezombie Member

    Lichu3 -- While the CAA will stop working with the CDC's provider education project, it still is under contract for the CDC's CFS Public Awareness Project.

    Kim McCleary stated that the CAA will be promoting articles rather than public service announcements at this point. But reporters interviewing patients referred to them by the CAA will be given the CDC's information as background material, including the CDC's recommendation of graded exercise as a *treatment*.

    That's why I think it would be best for patients to contact their local papers, news channels, etc. and offer an interview without going through the CAA.

    Didoe--There is definitely money involved. According to financial information filed with the IRS, 3/4 of the CAA's 2006 income came from government grants. The CDC was the main source of this grant money. This information was listed in the CAA's Form 990 for 2006, which can be viewed at:

    Spacee--Well, we did finally get Straus out of the NIH CFS program, didn't we? But it's still a very sad state of affairs if mainstream medical centers like Duke listen to this &*%#.

    Marta608--Thanks for your support :)
  16. findmind

    findmind New Member

    But I told you so!

    I am furious.

    I stopped all contributions to the CAA back in 1997 as I was very disturbed at the trend towards collusion with the CDC.

    Many of our "charitable foundations" are in bed with the devil, and I'm sick of it.

    I am sick, period!

  17. tansy

    tansy New Member

    is a great campaigner and advocate.

    Any reference to the UK's NICE guidelines should be cause for concern by everyone who fulfills the diagnostic criteria for ME as defined by Ramsay, Dowsett, Richardson, Hyde, et al.

    In the UK it is Action for ME, AYME, and the Suseex and Kent group working with St Barts Fatigue clinic (Peter White set this up and is a leading member of the Wessely School) who have helped to make our situation here in the UK even worse.

    The CDC would like to see what's happening here being brought over to the US. Please do not allow them to do this. The Insurance Industry helped the Wessely School to gain their stranglehold here. Dr David Bell has also highlighted the vested interests, including the insurance industry, that have hindered progress in the US too.

    Attempting to erradicate ME and using the meaningless CDC contruct of CF and CFS underlies current CDC preferences. They are no better than the Wessely School and our govt depts whose only interest is to rehabilatate the sick back into work regardless of whether they are able to do so or not.

    What's been happening to us is now being applied to other more medically accepted disabling chronic illnesses; so in the UK we may find ourselves with unexpected allies. Fear and panic among the chronically sick in the UK is becoming rapidly more widespread.

    tc, Tansy

    ps Please pass on my thanks to Mary for all her work past and present. It is much appreciated as of course is your own so Thank You Mezombie.
    [This Message was Edited on 06/06/2008]
  18. Spinetti

    Spinetti New Member

    I recently received a mailing from the CAA asking for donations to their CFS research campaign. Their slogan is "If not us who? If not now, when?"

    The full quote which they are paraphrasing is

    If I am not for myself, who will be for me?
    If I am not for others, what am I?
    And if not now, when?

    Rabbi Hillel
    Jewish scholar & theologian (30 BC - 9 AD)

    All are good questions to ask ourselves I think.

    Best wishes to all above,

  19. Bluebottle

    Bluebottle New Member

    For goodness sake start fighting this with all you've got - if you don't campaign your situation will be the same as ours.

    My family doctor actuallyjeered at me when I went to see him about breathlessness & heart palpitations last week - he said 'it's just the M.E., you're out of condition because you refuse to exercise' & he didn't check my heart at all.
  20. Lichu3

    Lichu3 New Member

    This is going to be tricky.

    Maybe why the CAA is linked to the CDC is probably beause they don't have enough funding to exist without the CDC. Aside from the CDC having the ability to influence others.

    CFS sufferers either are put off by the CAA stances (like here, don't know about the CAA, or too poor to donate. So the trick will be to not throw out the baby with the bathwater.

    If the CAA disappears, who else will represent us credibly?
    (Sorry, the NCF just doesn't do it for me.) The HHV-6 Foundation is good but confined to HHV-6 primarily whereas the Whittemore-Peterson is still very new.