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CAA is Listening

Discussion in 'Action Alerts and Advocacy' started by jspotila, Feb 11, 2010.

  1. jspotila

    jspotila Senior Member

    Ms. McCleary has two members of her family with CFS, one of whom is extremely ill. Some of her very close friends are severely ill patients. She has watched too many of us decline over the years, and she is intimately acquainted with what CFS does to those afflicted and to their caregivers. To suggest that she is unaware of this reality, or does not care, is hyperbole.

    Many of the bullet points you made have been discussed in other threads, so I won't repeat the material here. One point I would like to address:
    The Association does not have "relations" with White, et al. Neither White nor Wessely write CAA policy, and there are no facts to back up the assertion that they do.

    It doesn't take guts to be on this forum. I choose to be here. Other Board members have chosen other things to work on. There is more than enough work to go around!
  2. starryeyes

    starryeyes Senior Member

    Bay Area, California
    What's amazing to me is that the CAA has no problem leaving their SPARK! materials online which teaches our doctors and other medical personnel that CBT and GET are effective "treatments" for CFS.
  3. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    jspotila- Thanks for your response.

    Rebecca- Nicely said. Are you a carer for a severely disabled PwME?
  4. Cort

    Cort Phoenix Rising Founder

    I hope the Spark section will be taken off. The CAA does have to represent the scientific studies, however, and CBT studies have shown it to be helpful. The sticking point is 'effectiveness'. CBT appears to be an effective means of reducing some symptoms for some people - and that is enough for the scientific community to call it an 'effective' treatment for CFS (very low bar).

    Check out this from the latest CBT study: "Although CBT effectively reduced fatigue, it did not change the level of physical activity.": this is in fact my sense of Amygdala Retraining, meditaiton types exercises, etc. - they improve quality of life but they don't alter activity levels.

    The CAA should plainly state, if they haven't, that the role of CBT is to better manage its symptoms (as in any chronic disease) but not to cure the disease. The fact is, though, Teej that CBT properly done is helpful for many diseases. It improves immune functioning in AIDS! The key, for me, is carefully elucidating exactly where it can help (some symptoms) and where it can't (cure).

    If Spark doesn't make that clear then it should be removed.
  5. Cort

    Cort Phoenix Rising Founder


    This is the plain truth. For years Tom Sheridan went around using the CAA as an example of what a small organization can accomplish. The CFSAC committee, the Special Emphasis Panel for Reviewing CFS grants, the special ruling on Social Security, the first media campaign ever for a disease put on by the CDC, the physician education program plus the research program and now - the best of all - a visionary research network....

    For some reason none of that stuff gets much press. The negative stuff, on the other hand, gets a ton of press.

    this is ALOT for an organization that is very poorly supported by patients. What could we do if we really supported a national organization? If it really had the resources it needs? Honestly it makes me sick to think of the opportunities we're missing! (Actually it makes my stomach hurt thinking about it!)

    The CAA has done alot. I blame them for not tooting their horn more. I blame patients for picking on some things and ignoring the good stuff and basically not looking at the big picture.

    Even if the CAA was a mediocre organization I would support them (I just wouldn't talk about them much) We absolutely need to have a strong national organization.
  6. Dr. Yes

    Dr. Yes Shame on You

    That is one heck of a claim for CBT. Is there a reliable study that demonstrates this?

    Perhaps they can't see the forest for the trees because they're down on the ground and no one will give them a hand. Or stop people from stepping on them.
  7. Cort

    Cort Phoenix Rising Founder

    Why would you focus advocacy on 25% of any group?

    CBT - You're asking the CAA to bury its head in the sand on all studies that show that CBT can help some patients - thats just unreasonable. I'm sorry but its in the scientific literature. You're also ignoring the fact that probably 95% of the literature the CAA publishes and all the studies it funds focus entirely on physiological problems in CFS.

    White - If Peter White 'wrote CAA policy' they wouldn't be doing a single one of the research studies - that's a completely unfair characterization. You're also ignoring the fact that the CAA publicly slammed the CDC for its new focus on CBT.

    You're acting as if the CAA believes CBT is the answer to CFS. Thats hardly fair.

    You can choose the tar the CAA with the CBT brush because they do report on the scientific literature - and ignore the huge effort they've put into and are putting into getting at the physiological root of CFS - that's your choice, but I think its very shortsighted to do that.

    Yes, argue with the CAA about their choices - but portray them evenly -citing their accomplishments as well.
  8. Cort

    Cort Phoenix Rising Founder

    There's lots of evidence....

    Don't forget that Dr. Klimas found CFS patients have increased levels of a factor, whose name escapes me, associated with increased irritability, anxiety and stress. The HRV readings in CFS were very close to those of anxiety patients - the only group that was similar. The fact is that many patients experience 'system arousal' and doing techniques to slow the nervous system down is helpful.

    In this light CBT hardly appears to the bug-a-boo we think of it. Again this is from an AIDS paper:

    Here Stress Management did appear to reduce the rate of cervical neoplasia in HIV positive women. (Cervical neoplasia is a cause of cancer presumably through enhancing the immune response (by reducing stress levels - which contribute to a Th2 oriented immune response)

  9. MEKoan

    MEKoan Senior Member

    Hey Cort, I believe this is a reason to focus on the 25% who are most seriously affected.

    We often compare the reaction we get from the public to the reaction that people with MS get. In large measure, that compassionate reaction is a result of people connecting the diagnosis of MS with the small percentage of people who have PPMS or SPMS and are devasted by the illness. People understand the potential MS has to disable because they connect the diagnosis with its most dire consequences.

    People do not know what happens to the 25% who are most disabled by ME, nor do they have any idea what the most dire consequences are and the CAA website really does little (or nothing) to address that.

    It's a big problem.
  10. Cort

    Cort Phoenix Rising Founder

    Behavior/Mind Training and MS

    Rehabilitating cognitive functioning in MS Neurol Sci. 2010 Jan 15;288(1-2):101-5. Epub 2009 Oct 13.
    Efficacy and specificity of intensive cognitive rehabilitation of attention and executive functions in multiple sclerosis.
    Flavia M, Stampatori C, Zanotti D, Parrinello G, Capra R.

    Clinical Neuropsychology, Spedali Civili of Brescia, V. Nikolajewka, 13, 25123 Brescia, Italy.

    OBJECTIVE: To evaluate the efficacy of a computer-based intensive training program of attention, information processing and executive functions in patients with clinically-stable relapsing-remitting (RR) multiple sclerosis (MS) and low levels of disability.

    CONCLUSIONS: Intensive neuropsychological rehabilitation of attention, information processing and executive functions is effective in patients with RR MS and low levels of disability, and also leads to improvement in depression.

    Regarding memory, comparison of the groups showed no changes; within the treated group; however, the verbal (VLT) and nonverbal learning and memory (NVLT) improved significantly. The results for sustained attention improved in both groups over time. It must be assumed that a learning effect had occurred here. The depression values (BDI) also improved in both study groups. The follow-up questionnaire showed that 60% (6) attributed an average to above-average benefit to the training. CONCLUSION: To summarise, it is apparent that MS patients with mild to moderate cognitive impairment are able to profit from even a fairly brief neuropsychological training programme and to integrate much of it into their everyday lives. In view of this, it would seem appropriate to offer such a programme as standard, associated with medication.
  11. Cort

    Cort Phoenix Rising Founder

    Breast Cancer CBT and Immune Functioning

    Most of the literature on CBT is on depression and anxiety but when researchers do try to assess the effect of behavioral and relaxation therapies (call it coping) on HPA axis and immune functioning they generally find that it has positive effects.

    A study a year or so ago found that this kind of stuff reversed brain grey matter atrophy in CFS. There's no way the CAA can refuse to report on that.

    I find myself in the uncomfortable position of defending CBT in CFS. I don't think its the answer. I have not found amygdala retraining to increase my activity levels but it and other therapies have been helpful in my quality of life.

    Whoops, another HIV study -using relaxation therapies - modest effects of psychosocial functioning but significantly improved immune functioning.

  12. Cort

    Cort Phoenix Rising Founder

    I agree that its important for people to understand the true cost of CFS, for sure, and focusing on the 25% would help with that.
  13. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    Thanks for the support, everyone. Let me know if you have ideas for other changes the CAA should make and I’ll add them to the list. (I’ve thought of a couple things.)

    No, I have been and am a severely disabled PwME myself.


    In January I downloaded a brochure from the CAA website entitled “Clinical Care for CFS” (clinical.pdf). On page six of this document there is a sidebar with a blue background. It’s four paragraphs long and has several subheadings: “Cognitive Behavioral Therapy”, “Graded Exercise Therapy”, “Do These Treatments Work?”

    This section is, indeed, authored by Peter White. Next to a photograph of him is this byline:
    After we expressed concerns about this and other aspects of the pamphlet, the CAA finally removed it from the website. We thank you for doing so and hope that White and his colleagues will not make contributions to future CAA materials.

    Cort: We don’t want to stop you from getting CBT--but we do want the CAA to stop recommending it as a blanket treatment for all subsets of ME/CFS. The CAA should acknowledge that the effect of CBT on PwMEs with a large number of abnormal medical tests has never been studied because studies to date--especially out of England--have mainly used the Oxford Criteria to select patients. We do know that dozens of posters have said CBT and GET harmed them.
  14. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    This debate is maybe analogous to arguing over how best to depict a person with a broken leg, with a cane, a crutch, in a wheelchair, or in a hospital bed in traction? And of course there are people with varying severities of the 'broken leg' pathology, and all of those depictions are true for some people. So should a 'broken leg association' focus just on the hospital bed in traction image to elicit the most sympathy? Or maybe just a person on crutches since that is how most people would relate to 'broken leg syndrome'?

    In my personal opinion it is unethical to focus on any one subgroup when you have a whole spectrum of severity, all disabling and all distressing to some degree. Is a person who is bedridden and on total disability less stressed than a working mom who can barely make it to and from a part-time job where she is viewed with suspicion due to her continual fatigue and forgetfulness? Does one person matter more than another? OF course not, if one is benefited by CBT (the 'cane' analogy) then good for them. If another would be harmed by GET (the bedridden in traction analogy) then don't let anyone try that therapy on that patient.

    What we need is for CAA, the public, and CFS/ME patients to stay firmly grounded in reality. We have a complex, multi factorial illness with a variety of expressions and severity levels, but common end points. So THAT must be the message promoted by CAA, and all of us. I think most people know that MS has varying degrees of severity, as do Cancer, AIDS and other degenerative conditions. So we just need to make certain people understand that CFS is functionally as complicated and potentially severe as any of those other illnesses. We really do need a unified message about CFS and I doubt that will come from anyone with vested interests in specific research directions or treatment plans. What I would like to see CAA and other advocacy groups support would be studies that search for an integrative perspective of ME/CFS, and a consensus model that accurately reflects the science and is consistent with the experience of CFS patients. Something we all can agree with.
  15. MEKoan

    MEKoan Senior Member


    I think people have a better idea of the range of illness that is encompassed under the diagnosis MS. But, I think that is, in large measure, due to people like the talk show host (can't think of his name) who are not visibly disabled. A decade or two ago I think most people knew little about MS and assumed it led inevitably and swiftly to terrible disability. Maybe I am thicker than most but I was unaware of the range of illness caused by whatever MS is until I was mistakenly diagnosed with it myself and began to research it. That was less than a decade ago.

    If you want people to understand the seriousness of this situation they must know the potential devastation it can cause. I cannot see how describing primarily the more benign manifestations serves anyone except those who wish to dismiss us.

    There are people on this board who cannot speak, cannot walk, cannot think, cannot bathe, cannot eat...

    I think addressing the needs of those people first is staying firmly grounded in reality. The rest of us, the walking wounded, can wait a little longer. The 25% cannot.

    Peace out,

    ETA I just had to come back to make clear that I think most people don't know about the 25% and I don't think the current CAA materials or strategy will change that.

    Thinking is very difficult at the moment so I'm not sure if I ever really said that in the body of the post. Ok, I'm done.
  16. jspotila

    jspotila Senior Member

    I think Koan raises a very good point about MS. Montel Williams is the talk show host with MS, and he (like Michael J Fox for Parkinsons) has used his celebrity to put a different face on the illness. Over the past 25 years, MS has become much more widely recognized and understood. It is much more a part of the general lexicon, and the average person on the street has heard of it (even if they automatically think wheelchair). So how did this happen? In no particular order:

    • Celebrity involvement (Montel Williams, Tommy Hilfiger on behalf of a family member, Teri Garr, Richard Pryor)
    • Locally based fundraising movement like the MS walk
    • Objective diagnostics and understanding of pathophysiology
    • Medications to prevent exacerbations

    MS has respectability because the mechanism - auto-immune destruction of myelin - is understood and, to some extent, measurable. The cause is not known, and there is no cure, but the science is well ahead of where CFS science is at the moment. And 50+ years ago? MS was not a "real" illness. It was seen as a manifestation of hysteria in white women. More than 50 years ago, the National MS Society's founder was successful in getting the US Senate to recognize MS. How? A senator had a daughter with the disease.

    The trajectory of MS is an interesting and relevant model to keep in mind, and what resonates for me is the impact of hard data on the entire discussion. The image and prominence of MS changed completely with the invention of the MRI, etc.
  17. Gerwyn

    Gerwyn Guest

    The HPA axis dysfunction in anxiety and depression is not the same as found in ME.Stress management techniques used in aids patients have no effect onCD4+ counts or viral load and dont improve immune function or hormonal response in any way.

    psychological therapies always look better than a control when the therapy groups are on drug treatment and the controls not

    Disregulation of CD4 in AIDS is the cause of immune dysfunction but the study iinvites you to think otherwise
  18. Dr. Yes

    Dr. Yes Shame on You

    Thanks for the link, Cort. But that evidence is not what it is dressed up to be. First of all, that "lots of evidence" is as interpreted in a single review article by two psychologists (no immunologist, for example) of 14 RCT trials. Unfortunately, the real story behind the surface sheen is far less interesting than it might at first have appeared. There are several problems:

    Inability to demonstrate improvements specific to CBT

    From Carrico and Antoni: "The Effects of Psychological Interventions on Neuroendocrine Hormone Regulation and Immune Status in HIV-Positive Persons; A Review of Randomized Controlled Trials"

    That was my major concern when you mentioned this; that there would be no clear way to differentiate between CBT and more 'conventional' therapies or counseling. This has been the same issue brought up again and again in critiques of CBT for CFS, including in the Canadian Consensus document.

    They cherry-pick, and are quick to dismiss negative studies:

    Of the 14 trials they reviewed, only 6 showed the improvements that they highlighted. They attempted to dismiss the other 8 for various reasons, some very shaky. In order to get more positve studies they suggest that:

    (so their reaction to some of the negative studies is "well, we just need to find disease markers that will respond to psychological intervention to prove that psychological intervention can affect disease markers"???)

    Bad methodology of reviewed trials

    In other words, they used interventions with a combination of Cog. Therapy, relaxation techniques, positive thought techniques, etc., and can't tell which techniques made the differences they reported!

    In other words, only six of all the trials they reviewed found what they deemed to be significant changes in disease markers, and even among these it was not possible to assess these improvements quantitatively with any accuracy due to the number (and type, I assume) of variables they were looking at.

    Their CONCLUSION...
    i.e. we think we have evidence (though some others in our field disagree with us), but it is insufficient right now; things are still in the research stage, and definitely not ready for implementation by doctors in the real world.

    Also, here's the abstract from a paper they themselves cite as 'cautionary' to this area of research; it's worth quoting in full:

    Miller GE, Cohen S. Psychological interventions and the immune system: a meta-analytic review and critique.

    Finally, the study you quoted on CBT for preventing neoplasias:
    That is a single paper with a total of 21 test subjects.. and they do not make the presumption you did (at least, not in the abstract); they made no claim of absolutely enhanced immune function, but rather relative enhancement via stress reduction for a chronically stressed, low-income population. Plus you'd have to see the data behind their "odds" calculation before buying their conclusion, as nothing of that is explained in the abstract.

    So we're back to the same old place.. there are a lot of negatives and a few promising maybes and maybe one good lead in CBT research on a given disease, but (1) the evidence remains unclear, (2) the samples are small, the trials very few in number, and (3) studies are preliminary and research is at best in its early stages, definitely not ready for clinical endorsement. And I happen to find these trials more convincing than the ones on ME/CFS! So why is CBT a prominent (or THE prominent in many places) treatment suggestion for CFS?? And sure, reducing stress and depression can help improve the quality of life (and probably the immune status) of people with a number of diseases... but you don't need specifically CBT for that, as even the authors of the review you quoted clearly pointed out; interpersonal therapy, relaxation techniques by themselves, etc., when they improved an individual's mood, all seemed just as helpful as CBT.

    So why push this particular therapy, that among other things challenges your 'beliefs' about illness? Answer: it's faster, and therefore more cost-effective, and it also promises a model of rehabilitation as opposed to chronic treatment, so disability insurers (private or government) love the idea.

    And yet again, why do so many of us have a big problem with it?
    Because: (1) the graded exercise/activity component of most popular regimes ignores physiological reality and (2) the false illness belief ideology central to most models of CBT has so deeply embedded the belief in the clinical (and econo-medical) consciousness that most of us are less sick than we 'think' we are, that no amount of Klimases and the like will be able to rehabilitate the concept... leading to continued abuse and neglect of a majority of PWC by their government and private institutions as well as by their doctors and families. For CBT, justly or unjustly, is the major entry point for the psychosomatic school of 'thought' into the redefinition of our illness, and that is a reality and a danger you (and we all) must face.
  19. Gerwyn

    Gerwyn Guest

    you are quite right there are three presentations of MS each with its own prognosis--but with the same underlying cause.

    A disparate array of symptoms can create the impression of mutifactorial aetiology when it is not true.

    The most complex of disease presentations can have very simple causes
  20. Dr. Yes

    Dr. Yes Shame on You

    I feel the need to point out again that this perspective is very disturbing, and distorted. It is totally out of touch with the reality for so many of us, and that is what many of us think of the CAA. The 'facts on the ground' are far too ugly and desperate to overlook in favor of a vision of the 'big picture'. In fact, they are the picture. If the needs of that bottom 25% are addressed, the needs of the other 75% will surely be addressed in the process. But if the needs of only the top 25% are really represented, 75% will not be helped enough, many not at all.

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