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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. Dr. Yes

    Dr. Yes Shame on You

    Hi Oerganix.. great posts as usual; I know by 'truth' above you meant 'opinion'...

    The problem of course is when one person's opinion becomes policy for everybody ( i.e. prevailing medical attitudes toward exercise and behavioral modification in ME/CFS) or an instrument that reinforces that policy (i.e. the CAA and some of its supporters' positions on same). And of course, if one person's therapy is another's poison, yet the former is the one setting or reinforcing the policy. Then we have a problem, and the illusion of a democracy or community of opinion breaks down. This is unfortunately the situation with the CAA and the ME/CFS community especially over the issues of exercise/activity and CBT.

    If the CAA will not listen to the many voices that have been raised to it over the years on these issues, then it fails at least in large part as an advocacy group. If its positions - no matter how nuanced - are ultimately potentially harmful to many of its constituency (like those of us who have posted here over the months) then how can it call itself 'our' advocacy group with a straight face? And how can those who support it say they are really on 'our' side? We should strive to ACTUALLY be on the same side, to agree that no members of our community are mistreated or left out by our common positions, instead of blindly supporting the positions of a handful of individuals who happen to hold the reins of an organization.

    The current positions of the CAA on exercise/activity and behavioral modification are ignorant of political and physiological reality and dangerously neglectful of many PWC, including the most vulnerable (and therefore most in need of advocacy). The fact that these positions are promoted, for example, in the CME, which is intended to educate physicians about how to treat us, further makes this not a matter of opinion vs. opinion, but of some quality of life vs. terrible suffering, of livelihood vs. poverty for so many of us.

    The CAA is used to heavy criticism, apparently.. do its members REALLY think that all those who criticize it are just naive or unrealistic? (Or even 'kinesiophobes'?)

    The CAA will grow in strength when it includes all of our needs in its positions. Divisions only grow because it ignores these needs. If it continues to do so, it is time for the top of the organization to go - that is the only way it can save itself.

    As for supporters of the CAA who would argue even the points raised in the last several posts, and ignore the personal stories told, I can only say that you are apparently more interested in the abstract concepts of an organization and of 'advocacy' than in the human beings that are ALL supposed to be advocated for.

    I am sick of seeing us being "handled" by the CAA in familiar politico-bureaucratic fashion, or of being challenged incessantly by the repetitive and self-contradicting arguments of at least one of its supporters, without ever having real policy changed to meet my needs and those of many others who desperately, desperately need it.

    Please stop ignoring us -- and don't try to tell us you are 'not ignoring' us until you have changed your official and unoffical positions such that they meet our needs.
  2. Koan

    Koan Be the change.

    caa = fail
  3. Dolphin

    Dolphin Senior Member

    Treatment guidelines

    Lots of interesting posts since my last post - again apologies for not acknowledging them individually. Thanks for the support, catch.

    I have seen quite a lot of talk about new treatment guidelines in the US in the last year. There was talk of CDC writing international consensus management guidelines and then some by the CFSAC, CAA and/or the IACFS/ME.

    I'm afraid I can't remember many of the details (i.e. which are definitely going to happen) but I just thought I'd remind people that the current treatment guidelines aren't the only one's that need to be watched. And to be honest, I'm nervous about US guidelines - too many of the physicians over there are into exercise programs. Leonard Jason (a psychologist) is one of the few people I trust but on his own, he'd like just give in a bit. Some UK physicians and other "experts" are more into pacing.

    Anyway, I've lot of responsibilities so won't be staying as involved in US activism as I was in 2009. But I think people have to be wary. Most guidelines so far tend to be written up by groups/panels which involve little patient input.

    I've heard calls that what was on the CDC's website wasn't detailed enough with regard to treatment. But more detailed advice could be more into pushing exercise programs.
  4. Gerwyn

    Gerwyn Guest

    It is dangerous balony and gives the strong impression that a lack of excercise is at the root of the problem in the first place.It is easy to latch on to a theory on a n=1 basis.There are exceptions to every rule.The scientific method eliminates concious and unconcious biases and provides objective generalisable information.Science tells us that CBT has no objective effect on any of the core symptoms of ME and that GET is positively harmful.This is contrary to the conclusions of antipositivist studies
    where in the biased opinion of the investigators GET and CBT are effective.They do not however define what effective actually means
  5. citybug

    citybug Senior Member

    Is the CAA supporting WPI? Will the CAA be our advocate with the CDC?

    What is the CAA doing to support WPI? I was looking over their site and their research goals and mission statement look better than I expected. They are reporting and congratulating WPI, but where is the helping hand? Are they in competition for research funds? This is a crucial time when these two organizations need to stand together.
    I'd like the CAA to back a study at WPI, and to aid them in fundraising, lobbying and everything else. Did CAA help when WPI was hitting Capitol Hill? How else can they help.
    Dr. Mikovits says where is the support from our patient groups? If CAA isn't supporting the WPI organization any way it can with the huge strides that WPI has made so far we don't have a support group.
    I'd like to see a study that provides testing at WPI for 10 blood samples from several CFS doctors around the U.S (like WPI has done in UK) to help get our doctors behind WPI. So far testing has been blind or through VIP without antibody testing. Or for CAA to adopt some sequences. (That's a great idea, in new thread).

    One of the CAA main activities has been to increase funding for CFIDS. Since federal funds have gone to the CDC, they need to be a watchdog of the CDC. When they accepted the contract for the faces of CFS from the CDC, the CDC got them to spend their energy elsewhere, and compromised them in the eyes of patients. Will they follow up their stand against Reeves with more aggressive representation?
    Now Susan vernon is on a committee with the CDC and FDA as a patient representative. (The HHS Blood XMRV Scientific Research Working Group with DHHS Office of Public Health and Science, NIH, CDC, FDA and Suzanne Vernon http://www.cfids.org/advocacy/2009/gac_120409.asp ). We should know how she'll be representing us there. What will her goals be?
    This is a time when they could be wasting a lot of money or making something happen. We need to make sure it will it translate into testing and treatment for ME/CFS patients in the near future.
    Is the CAA pressuring anyone to provide funding to WPI to develop the tests for XMRv?

    The HHS Blood XMRV Group plans stage 1) validate laboratory methods and reagents for XMRV testing., test 1,200 healthy donors blood samples and 100 CFS patients samples collected by Dr. Judy Mikovits, stage 2) assess the prevalence of XMRV in the general population and blood supply, as well as in other CFS patient cohorts (What will this mean?) stage 3) studies to understand how XMRV is transmitted, whether it causes human disease, and how it affects various subgroups of the population.

    We don't need more prevalence studies. They have been doing prevalance studies for 25 years. It doesn't matter how big the group is. They have let us suffer too long. I think our representatives should be telling them we are really angry and want treatment now. We need an accelerated program. They already know there are enough patients for funding of clinics and treatment studies. The federal agencies could be subsidizing testing for CFS patients or provide funding for developing the tests now.
  6. Gerwyn

    Gerwyn Guest

    perhaps the CAA could make its comments about CBT match the comments in the UK NICE guideline

    In the context of ME/CFS, cognitive-behavioural approaches are not evidence-based to a level where they can be claimed to be specific ‘treatments’ – an unsurprising observation, given that the ‘syndrome’ diagnosis delivers a heterogeneous population widely believed to contain distinct clinical sub-groups.

    The systematic review underpinning NICE Guideline 53 found ten randomised clinical trials on adults, three of these negative with the remainder showing mild-to-modest positive, though non-curative, results.

    Recent overviews have confirmed this; a Cochrane review found 15 studies of CBT (including controlled clinical trials) for CFS/ME and took a more cautious view of the evidence and its limitations than the BMJ editorial authors, as did a second recent review. This latter meta-analysis of 13 clinical trials (representing 1,371 patients) found a very mixed bag of studies and reported an overall effect size that was small–moderate by usual standards. Not for nothing did NICE Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it did ‘not regard CBT or other behavioural therapies as curative or directed at the underlying disease process’.
  7. oerganix

    oerganix Senior Member

    Yes, Dr Yes, we are in agreement. The CAA has been speaking down to us or ignoring us and we all need to stick together in support of the sickest amongst us. As I have said elsewhere, the fact that they are doing some good things doesn't compensate for the harmful things. We need, and deserve, a patient advocacy organization that does ONLY good, as defined by those very patients.

    I see some moves in the right direction from CAA, but it sometimes seems begrudingly done, the tossing of a bone in our direction. "Here's a cookie, now go away and leave us 'experts' alone."

    Is 'divide and conquer' going on here?

    Dr Vernon's bizarre statements regarding the Failure-to-find studies and the Oxford/Wessely definition, the CME and Sharpe-inspired garbage re: GET/CBT all leave me wondering what the hell is going on at CAA. With friends like that, we don't need enemies.

    Apologia from Cort on their behalf doesn't change that. Anything originating from the long sewer pipe from Reeves, Wessely or anyone else from the its-all-in-your-head mafia should have been cleansed from CAA long ago.

    You mention 'livelihood vs poverty'. I don't think the economics can be over emphasized. How much compassion and empathy does a salary that is around 20-25 times the disablilty benefit many of us receive buy? Does it just buy more complacency and callousness?

    The attitudes towards the damage that GET/CBT cause are certainly callous, IMO.
  8. Koan

    Koan Be the change.


    Thank you, kdp, for reminding everyone what an advocacy organization does - advocacy!
  9. jspotila

    jspotila Senior Member

    The CFIDS Association has never received a grant application for XMRV research. I don't think the Association and WPI are in competition with each other for research funding; the organizations use different funding models. The Association's $1 million Campaign to Accelerate CFS Research was funded by individual donors. The WPI received a $1.5 million grant from NIH in September 2009 (I think it was).

    WPI did not invite the Association to accompany them! The CFIDS Association worked the Hill in early March to submit appropriations request justifications. You can read a summary report here: http://www.cfids.org/cfidslink/2010/040704.asp

    The Association has been pushing CDC to improve the CFS research program for years - long before other groups joined in the call for Reeves' removal. You can read about those efforts here: http://www.cfids.org/cfidslink/2009/050607.asp

    Dr. Judy Mikovits also serves on this committee. Dr. Vernon is advocating for impeccably designed studies, including blinded sample testing, that will swiftly bring the answers that patients are correctly demanding. With the Canadian blood supply now refusing CFS patient donors, this puts pressure on the Working Group to get their own blood studies underway. I hope we will hear a detailed report from the Working Group at the CFSAC meeting on May 10th, but the agenda is not posted yet.

    As you laid out, the HHS Working Group is supposed to be conducting a three-phase study to determine if XMRV is a threat to blood safety. If it is shown that XMRV is a threat, then an FDA approved test must be developed to screen the blood supply. It seems to me the federal government will proceed step-wise through this plan before investing money in large scale test development. Commercial entities are free to undertake test development, and remember that WPI already has a test for XMRV that it has licensed to VIP Diagnostics.
  10. Koan

    Koan Be the change.

    There has been an impeccably designed study. It was done by WPI in collaboration with some pretty credible facilities.

    I'm sorry, Jenny, but this kind of statement is really infuriating.
  11. Orla

    Orla Senior Member

    Kineisephobia = Psychobabble 1.

    I'm going to put a few posts on this as I think this is an issue that needs to be tackled.

    Thanks to Teej for quoting some of the material from the CME. There some very dodgey things in the CBT/GET section (which I hope to point out at some future date). But for now I want to focus on the Kinesophobia (exercise/movement phobia) nonsense.

    There is some good stuff in the CME, but the bad stuff contradicts it in some ways. As the bad stuff implies (without any proper evidence I might add) that an exercise programme can improve the patients symptoms and functioning, doctors are more likely to pay attention to this than any advice about Pacing.

    I was horrified to see this old chestnut about exercise phobia in material involving the CAA. This is the sort of thing one expects from Simon Wessely, Peter White and the like, but what is a patient group doing spreading this psychobabble propaganda?

    If exercise/movement phobia even exists it is extremely rare, certainly in ME/CFS patients, and most doctors are unlikely to come across it. But many doctors are likely to misinterpret a rational decision to Pace, and try to stay within ones limit, as an exercise phobia.

    The CME material is likely to contribute to this, by even using the word at all, but also by not emphasising enough that inappropriate avoidance of activity (which wouldn't necessarily be as extreme as a phobia) is extremely rare in ME/CFS cases, especially if the patient doesn't also have some psychiatric problems.

    Unfortunately I think it is likely that many doctors will conclude that it is the more severe patients who are phobic (and the CME matieral could contribute to this view). I have seen this sort of thinking from some US based doctors or clinicians who had a good knowledge of other aspects of ME/CFS, who seemed to think that if a patient wasn't doing much they were inappropriately afraid of activity.

    (I have noticed a bit of a US/UK divide on this, and feel that some of the US doctors adopted some of the ideology of the psychiatrists, probably without realising what they were doing. I might say more about this again).

    The problem for the more severe people is that these doctors might look at how little they are doing, and so think, if exercise phobia exists, well it cannot be the more "mild" patient who have it because they are doing a reasonable amount, so therefore it must be the more severe patients. Of course many doctors/physios/therapists/clinicians will just think ALL, or most patients with ME/CFS, have a degree of abnormal activity avoidance/exercise phobia (for example the CBT School people think this).

    So if a doctor buys into the phobia line they might try to inappropriately get patients (especially the severe ones) to do more. Even if the doctor doesn't really believe that the severe patient is really phobic, they might still ask the patient to try to do more, even if it should be obvious that the patient is already at their limit. One major problem for the patient is, how is a patient meant to prove that they are not phobically avoiding activity?
  12. Gerwyn

    Gerwyn Guest

    There is no scientific evidence of any objective benefit for either GET or CBT in patients with M.E.There is however considerable potential to do harm.The prime directive for a doctor is" first do no harm".that is all the CAA needs to say on the subject.Administering CBT and GET is contrary to the Hippocratic oath---Simple!
  13. Orla

    Orla Senior Member

    Kinesophobia = Psychobabble 2.

    A phobia is not about being a bit worried, or rationally worried. It is about having an irrational fear of something, either falsely worrying it can harm you, or worrying out of all proportion to the actual risk. Simon Wessely commented on what a phobia was in one paper (the paper was not on ME/CFS).

    And just one definition of Kinesophobia I came across quickly

    So bearing this in mind, these are the relevant quotes from the CME material:

    How are they avoiding ALL activity? Ill tackle their references again.

    And even worse further down the page:

    This will give the impression that many severe patients are not severe because of biological problems but because of phobic avoidance. Doctors are already trained to worry about deconditioning problems, and trained to see (and often promote) the benefits of exercise (to patients in general). So these points don't really need to be emphasised to them.

    On top of this many will know little or nothing about ME/CFS, or have very ingrained inaccurate and prejudiced ideas about patients. Many patients will not have acess to tests to prove that they have biological problems. Specifically specialised tests to show abnormal responses to exercise are normally only done in a research setting. Even if put on a programme the vast majority of patients won't be monitored to see the biological effects exercise is having on them.

    So in this context the patients, especially the severe ones, are very vulnerable to being pushed to over do it, by well meaning but ignorant doctors.

    And who decided walking was a low level activity? It is not for a severe person (elsewhere they talk about walking as aerobic activity). I haven't been for a walk in years, not because I am phobically avoiding, but because the pay-back is so severe, and I need to try to save energy for the basic activities of daily living, which I struggle with every day.

    And as for floating in the pool, unless the pool is right outside your back door, going to a swimming pool is going to involve getting to a gym, dressing, undressing, going to a chlorinated pool (mostly), noise, etc. (funnily enough they point this problem out elsewhere on the same page)

  14. jspotila

    jspotila Senior Member

    Yes, and that study needs to be replicated and validated with results published in peer-reviewed publications. Dr. Goff recently said that samples need to be exchanged and blind testing needs to happen. Dr. Vernon is advocating for this on the HHS Working Group. I would assume Dr. Mikovits is also advocating for this, although confidentiality agreements apply to Working Group discussions and I have no knowledge of those discussions.
  15. BEG

    BEG Senior Member

    Southeast US

    OK. WELL. Someone's belief system should not undermine what they write. I respect Cort's right to express his opinion wherever it's coming from. I respect the right of everyone here to express themselves in any manner they see fit whether that be strictly 3rd person objective or 1st person singular or any type of mix, and especially coming from wherever.

    However, a person is a composite of his stories, or life experiences, if you like. They can never be separated. I believe it was stated most powerfully by Maarten in post 1124 of this thread. The survivors were unjustly imprisoned, and they embody their stories. If I may use a metaphor here, Maarten, sufferers of ME/CFS also live in a prison, one of self limitations. We have stories and we embody them. We don't embrace them to perpetuate some kind of racket. We embody them. On some awful level they define us because our bodies confine us.

    I repect everyone's right to post in a manner they see fit with their biases, their personalities, their religious beliefs, their intellect, and the embodiment of all their life's experiences. Peace out (for you, Koan) and Amen.
  16. Orla

    Orla Senior Member

    Kinesophobia = Psychobabble 3.

    This concept of activity/exercise phobia is a concept which comes directly from those who hold the psychiatric view of ME/CFS. These people view ME/CFS not as a medical condition or disease, but as a mental health and behavioural problem (consisting of an irrational fear and avoidance of exercise, deconditioning, stress, poor sleeping habits, and commonly depression/anxiety.)

    These people think that we misinterpret symptoms as signs of disease (which they say doesn't exist) and that this is part of our disorder. Just a few quotes to illustrate this point:

    This is from a handout given to patients who attend the Liverpool CF/CFS clinic (and which was also used in a graded exercise trial)

    They think that because we misinterpret our symptoms as signs of disease, we inappropriarely avoid activity. This is how it is meant to go: Because we worry too much about about our symptoms, and about what might make our symptoms worse, e.g. exercise, we end up with totally exaggerated and irrational fears about doing normal activities.

    They think that our abnormal fears cause us to unnecessarily restrict our activities (called phobic avoidance/fear avoidance). In their view, this unnecessary avoidance of activity causes more symptoms and disability (because they think most of our symptoms come from deconditionig).

    So basically the psychiatric view is that our abnormal illness beliefs (that is our belief that we are physically ill) causes us to engage in abnormal illness behaviours, including phobic/abnormal avoidance of activity.

    A few quotes to illustrate this point (I have put some text in bold):

    So it doesn't really matter what is scientifically right or wrong, they don't like any concept of our illness that recognises it's biological basis and that might interfere with their treatment (CBT/GET).

  17. Mithriel

    Mithriel Senior Member

    That is a particularly nasty little point. Being unable to go to a shop on your own may just about be a sign of a phobia, though in ME it could be becasue they do all the lifting and pushing of trolleys, but sensory overload is a well established symptom of ME caused by the nervous system being unable to filter out sensations.

    So their wrong interpretation of our symptoms as psychiatric is taken as proof that our symptoms are psychiatric. It is a totally circular logic.

    And they talk about us having "beliefs" rather than facts.

  18. Gerwyn

    Gerwyn Guest

    first the entire study has to be replicated in its entirety,One must ask why no one has even attempted this ? One must also ask why Dr vernon has not pointed out that fact when each failed study was published.why did she not highlight the issues regarding cohort selection when she was well aware that results of studies using different selection criterea are almost impossible to compare.She actually co-authored a paper on the subject
  19. Orla

    Orla Senior Member

    Some possible responses to psychobabblers

    Some sane quotes for a change. I had meant to quote this earlier:


    Here is how one doctor viewed comments elsewhere which were very similar to those on the CME page (I'll put the comment first, and the reaction beneath it)

    Doctors could send in comments on the draft Australian Guidelines. This is what one (neurologist) wrote on the above comment:

  20. Gerwyn

    Gerwyn Guest

    I've heard the term rackets used in this thread.This is a metaphor originating within the therapeutic approach called transactional analysis which was the brainchild of psychiatrist Eric Berne.


    A racket is the dual strategy of getting "permitted feelings," while covering up feelings which we truly feel, but which we regard as being "not allowed". More technically, a racket feeling is "a familiar set of emotions, learned and enhanced during childhood, experienced in many different stress situations, and maladaptive as an adult means of problem solving".

    A racket is then a set of behaviours which originate from the childhood script rather than in here-and-now full Adult thinking, which (1) are employed as a way to manipulate the environment to match the script rather than to actually solve the problem, and (2) whose covert goal is not so much to solve the problem, as to experience these racket feelings and feel internally justified in experiencing them.

    Examples of racket and racket feelings: "Why do I meet good guys who turn out to be so hurtful", or "He always takes advantage of my goodwill". The racket is then a set of behaviours and chosen strategies learned and practised in childhood which in fact help to cause these feelings to be experienced. Typically this happens despite their own surface protestations and hurt feelings, out of awareness and in a way that is perceived as someone else's fault. One covert pay-off for this racket and its feelings, might be to gain in a guilt free way, continued evidence and reinforcement for a childhood script belief that "People will always let you down".

    In other words, rackets and games are devices used by a person to create a circumstance where they can legitimately feel the racket feelings, thus abiding by and reinforcing their Childhood script. They are always a substitute for a more genuine and full adult emotion and response which would be a more appropriate response to the here-and-now situation.

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