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Canceling my monthly CAA Chairman's Circle donation

Discussion in 'Action Alerts and Advocacy' started by CBS, Feb 21, 2011.

  1. CBS

    CBS Senior Member

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    My bold and underline of the sentence beginning with "HOWEVER,..."

    Dear Hope,

    Thanks for your post. I've been told the same thing by the CAA. If the CAA is not an advocacy but is instead focusing on research they should 1) keep their mouths shut on advocacy issues and 2) get it right when they comment on research (find someone else to do it!).

    Last Thursday, as Kim McCleary was telling the world that it was unfortunate that the "treatment" evaluated in the PACE trial was not available to most CFS patients in the US, I was seeing specialists at the University of Utah's Speech Pathology lab and being told that signs of the CNS damage that are now obvious began three three years ago, following a period of pushing beyond my energy envelope.

    At that time, there was a period when my health began deteriorating quite rapidly and then I started acyclovir. That seemed to slow the decline but for some reason the decline seems to be accelerating again. Before starting desmopressin (for florid diabetes insipidus) and lisinopril (to treat essential hypertension that we now suspect was caused by vagal nerve damage), I had numerous TIAs each week (sometimes several in a day), a number of syncope episodes and a seizure as I was walking out of what turned out to be my last meeting as a community representative.

    In part, I'm upset at the CAA as I feel that there is a very delicate balance between getting an optimum amount of activity and crossing the line into a zone where significant damage is being done that may take years to accumulate and by the time you see it, it's too late. Encouraging ME patients to undertake gradually increasing degrees of exercise is insane. I have never met a CFS patient that wasn't already doing too much. What happened to the notion of an energy envelope?

    And as for the CBT garbage, CBT is not simply another name for supportive counseling. A primary target of Cognitive Behavioral Therapy is behavior and the other half is irrational beliefs & erroneous cognition. CBT was developed to treat phobias and anxiety disorders by encouraging patients to approach that which they feared and in the process, change their inner dialog. This was used to overcome "stimulus avoidance" that would lead to negative reinforcement and erroneous beliefs (eg. exercise makes me irrationally anxious - I avoid exercise and my level of anxiety lessens, I reinforce my irrational beliefs in my disability when my discomfort - and psychosomatic symptoms - decrease when I avoid exercise. Therefore, I need to exercise and ignore my body as my perception of being ill is caused by anxiety, not because there is anything physiologically wrong - here's a pretty good outline of CBT - http://www.jsot-jo.org/DBPPT/Infusing%20Occupation%20into%20Practice/8%20Cognitive%20Behavioral%20Therapy%20(CBT).ppt).

    In this model, CBT and GET are interdependent and inseparable halves of a unified approach to treating irrational beliefs. This may lead a sub-group of mildly effected ME patients to temporarily increase their activity and attribute their poor response to anxiety and it does work for people whose primary issue is depression or anxiety but I am convinced that the most severe damage done by anything other than supportive counseling and a deep respect for a patient's energy envelop will only show up years down the road and long after anything can be done about it.

    The damage done last Thursday by the CAA and Kim McCleary is immeasurable and it will come in the form of an uncritical and uneducated application of the maxim to ignore physical symptoms, increase activity and an ignorance (in the face of a golden opportunity to educate) on the importance of the energy envelope and the critical distinction between supportive counseling and CBT. The other area where this damage will be palpable is when ME patients go before uneducated and already biased disability judges who (with the blessing of the CAA) will force patients to go far beyond their "energy envelopes" in an effort to simply survive.

    These patients will pay dearly for the Kim McCleary's sloppy attempt at something they now try to claim that they want no part of - "advocacy." I know this may sound like a harsh judgment but anyone speaking as an ME advocate must realize what is at stake for those they claim to support and the real damage done by careless comments. We would have been better off it the AA and Ms. McCleary had simply said she had nothing to say until after she had read the study (except perhaps that conclusions drawn by the authors needed a closer look as they were at odds with recently published studies done in other countries and Jason's recent publication on the importance of an "energy envelope") or if she had deferred to PANDORA for a public comment.
  2. Hope123

    Hope123 Senior Member

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    Yup, I agree.

    The CAA should have said "No comment", "We'll come out with a statement later.", or referred the reporter elsewhere. I'm no PR person, I trained in the sciences, but I know how to respond when I'm not certain about something. The best response would have been to be prepared so I've learned my lesson but the CAA should have known this, given all the buzz about PACE over the last few months. For all the criticism UK orgs come under, I have to give kudos to AFME which put out a survey showing a large percentage of people deteriorating due to GET same day as PACE came out.
  3. Dolphin

    Dolphin Senior Member

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    Sorry to hear of your health problems, CBS.

    I know you know what you're talking about on counselling, etc (i.e. more than most on PR) so thought I'd highlight the following as I keep hearing CBT being desribed as a coping strategy and the CBT in the PACE Trial in particular is nothing close to that):

  4. jspotila

    jspotila Senior Member

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    The Association is not investing money in studying coping mechanisms, and in fact, the Board specifically declined to entertain those types of grant applications in the last round.
  5. CBS

    CBS Senior Member

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    Jennie,

    Reading the original quote, I don't think that WillowTree was trying to assert that the CAA was funding coping mechanisms. I think the point was that if this is indeed the CAA's position, then a comment on the PACE trial was a missed opportunity to share that message with a very large audience.
  6. George

    George waitin' fer rabbits

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    Leader of My Doggie Pack (grins)

    This is why you are the leader of my doggy pack, Shane.(big grins) Thanks for sharing so much of the difficulties you are facing. It helps to put it in perspective. (hugs and warm puppy noses)

    Like you Shane, I'm sending my dollars, (all $10 of them! Grins) directly to support the research that I think is most promising.

    The difficulty arises with the fact that the patient population looks to the CAA to educate the public, the research and medical community and the political field about what ME/CFS is and what is needed to care for those who are struck with this disease. For years the patient population has relied on the CAA to fulfill this role. There has been a real disconnect between what the patients consider "advocating" and what the organization considers "advocating". And now the disconnect has grown even larger and the CAA seems to be taking itself in a new direction, that of funding and directing research in the field. Personally, I think Kim is a great "Washington Insider" and I think she can do things on that front that we may well need in the future. God knows that Good Research is certainly needed.

    This leaves the patient community with a huge void where no group is actively working to educate and elucidate what ME/CFS is and the untruths that are being bandied about in the press. Talk about playing fast and loose with facts, there really is a faction that is burying us in misinformation and we desperately need to combat that faction. We need to be able to assess the information and hit back as fast and as hard and as loud!

    Good definitions of our illness, clinical guidelines, management, treatment and research information; all need to be addressed on a large scale level. Pamphlets, websites, and Public Service Announcements that show up on TV, have languished as the patient population has waited expectantly for someone to speak up and debunk the mythology of "CFS" loudly and soundly. I think it's time to stop holding the CAA accountable and admit that the folks who populate the organization are taking it in another direction, and then we need to get on with the efforts of trying to build an organization that meets the more critical need of churning out press releases to fight the avalanche of "detrimental" press releases. We need to let the CAA go and build an organization that can address this really critical need.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    right. i got that too.
  8. Chris

    Chris Senior Member

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    I am another who was giving a very small monthly donation to the CAA, which I cancelled a couple of days ago. I have been giving little dribs and drabs to the WPI; now I shall split what I can afford between them and the Utah group. But it is a shame--those webcasts were mostly excellent, and I have no doubt about good intentions and that kind of thing. But if they are not going to fight hard politically for us, I think contributing a mite to the real researchers is the way to go, hoping that eventually that will win out. But it's a sad day without a doubt. Chris
  9. jspotila

    jspotila Senior Member

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    I have the utmost respect for Hope123, and what she contributes to the fights against CFS (including her excellent comment on the NYT article last week and much more). However, I think she is drawing conclusions from a private conversation she and I had, and some of the context is missing. The Association made research its top priority in November 2008 while I was Chairman of the Board, and we have continued to refine our strategies in pursuit of that priority. That isn't anything new, and I addressed this in my interview with Cort. Future adjustments, changes, partnerships, etc. will be announced by the Association when appropriate. As my conversation with Hope123 was private and I was not speaking to her in my capacity as a Board member, I think it is best to leave future comment to the Board and Association as a whole.
  10. urbantravels

    urbantravels disjecta membra

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    Thanks for sharing your difficult decision and the reasons behind it with us, Shane.

    I've always been a moderate pragmatist on this kind of issue. I'm pretty new to the world of CFS politics. I've only been sick for 16 months, and I don't have strong feelings about what CAA's failings may have been in the past. I've thought that the CAA's webinars are useful and that their support for research was valuable.

    When I had a little money to give, I gave it in equal portions to CAA, WPI, OFFER (specified for research), and Klimas' Morton fund at the University of Miami. When I did a causes.com birthday wish, I designated CAA's SolveCFS effort as the recipient. (I actually wanted the money to go to Dr. Klimas, but found that causes.com can't support designating funds to a specific place within the University of Miami. Causes.com isn't a very sophisticated tool, unfortunately.) But I felt OK about supporting CAA, because I figured it would go to a diverse body of research.

    And I'm in the process right now of signing up to participate in the SolveCFS Biobank.

    But I am deeply, heartbreakingly, sickeningly disappointed at the public comments that Kim McCleary has made to the media regarding the PACE trial. What a teachable moment that *could* have been. While countless press outlets were mindlessly repeating the press release spin about PACE, those few outlets that actually bothered to pick up a phone called Kim, looking for a spokesperson for the US CFS community.

    By and large, she has been the ONE SINGLE PERSON in the U.S. who was handed a platform to speak out against the PACE trial and the incredibly damaging spin it's been given...and she blew it. I am thunderstruck at how weak and wrongheaded her comments were.

    I am a moderate pragmatist who never likes to overdramatize anything, but I think Kim's comments to the press were an UNMITIGATED DISASTER. It was an opportunity to lead, to make a strong clarifying statement about what's really being discussed here and what's really at stake. Instead, Kim added more fuel to the fire of misunderstanding and prejudice that's already burning out of control because of the media spin given to the PACE trial.

    I no longer have extra money to give the CAA, so that is not the issue. I have some ability to influence a few others who can make small donations; I don't want any of that to go to the CAA any more. I'm even reconsidering my decision to participate in the Biobank - as badly as I want to be able to contribute to research, even when I have nothing but my cells to offer - my trust in the entire organization has been damaged.

    To hear the response Hope123 got when she expressed her concerns to the CAA - "I was told that the CAA now considers itself an organization focused on research and not on media response, patient advocacy, etc." - not only shocks me, it makes me angry. If you don't want to do media response, DON'T TALK TO THE MEDIA. If you're out of the patient advocacy business, there would be far better ways to let the patient community know this. This statement made to Hope123 just strikes me as cowardly, backpedaling defensiveness.

    The leader of the CAA just lost her organization my support and respect.
  11. illsince1977

    illsince1977 A shadow of my former self

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    I hate to say this, but on CAA's website http://www.cfids.org/about/default.asp it explicitly states that addressing the media is one of their functions. So this response from McCleary saying CAA has a different focus seems contradictory at the very least, if not outright disingenuous.

    Washington insiders who claim to be a voice for a community should know that the media is going to ask for comment on pieces they're doing, not just regurgitate controlled message press releases from their organization. Referal to a countervailing press release would have been in order, in lieu of participating in an interview if consideration of poor speaking skills was an issue. How did McCleary advance understanding? I agree with Urabantravels. She blew an opportunity handed to her on a silver platter. Then the CAA compounded that by claiming after the fact they don't represent the patient community to that very patient community. This dissembling shows very weak character, indeed. Take a page from TWIV's Dr. Racaniello and admit you erred.
  12. Hope123

    Hope123 Senior Member

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    My other suggestion to the CAA would be, if you are going to concentrate on research, then talk up the research as much as possible. Again, not my area, but I know universities and other research institutes have a PR division which issues press releases when they have a new discovery, are giving a talk, establishing a new partnership, etc. etc. The Lights, Pacific Fatigue Lab, and other researchers supported by the CAA have done superb studies documenting what happens when people with ME/CFS try to exercise. The CAA could have directed reporters to these studies when asked about PACE; there are ways to control/ influence a conversation so you end up getting your point across rather than emphasizing what the reporter chooses.

    I still have some faith in the system and believe if researchers, doctors, and the public were aware of the objective research findings in ME/CFS (not just XMRV but neurologic/ immunologic/ etc. findings), some might change their minds. As they say, the truth will set you free. I don't believe the CAA or any group has pushed hard to make this information easily accessible or visible.
  13. dsdmom

    dsdmom Senior Member

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    Personally I don't think the caa is going to change anything. Mccleary is not going to step down. How long are we going to complain about the lack of change? The definition of insanity is doing the same thing again and again and expecting different results. At this point I am looking for another org to support.
  14. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    Sorry, I wasn't very clear here. What I meant is that the UK, from where this study originated, or whoever else may be putting money into this type of research is wasting precious research dollars and getting us nowhere. This is a physiological disease and needs bio-medical research. The psychiatrists and psychologizers will have to face this sooner or later. In the meantime precious time and money is being wasted as more and more people come down with ME/CFS and the suffering continues. This is the message I would like to have seen given in response to the PACE study.
  15. LaurelW

    LaurelW Senior Member

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    Hear hear, Willow! This stuff really raises my ire.

    And thanks for taking a stand, Shane. I totally agree with you. This was not only a missed opportunity for Kim, but damaging to us.
  16. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    George, I think you hit the problem right on the head. You described well the political climate we find ourselves in and the kind of response we need and expect from our advocacy organizations. A lot of my anger and disappointment comes from the fact that that is not taking place. I think of the newly diagnosed lying in their beds, helpless, and the flak, derision, and ill-advice they will receive from their families, friends, even their physicians, who don't understand this disease and who just had their mis-conceived ideas about ME/CFS reinforced once again by these headlines. I think of those trying to maintain a normal life by living up to the expectations of those around them, even though their bodies, crying out in pain and pushed beyond their capabilities, are becoming increasingly damaged. I want someone fighting for them and speaking up for them until they are strong enough and able enough to speak up for themselves and to do what is necessary for themselves and their bodies in order to live well with this disease. I was once in that helpless spot, and I know the long, hard, painful climb to get out of it by educating myself about the realities of ME/CFS and by learning to stand up for myself against all the prejudice, misconceptions, and sometimes ill-will held by the mis-informed public. We need, want and expect an advocacy organization that will counteract those who are trying to bury this disease and define it out of existence, and in the process cause exceedingly additional harm to vulnerable sick people .
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think we all agree that caa does not adequately and/or competently speak to media, advocate, spread and act as a resource for accurate info. i would like to see caa and PANDORA do this. If it won't pls refer media and visitors to the website to someplace that will. prob not to WPI unless the topic is retroviruses. maybe PANDORA, though i don't know what they would say and some of the things Marly has said recently, such as that we need to build trust with CDC, worry me. maybe they can do this with our input. maybe MCWPA. I like them and think they have done good work in their short life. Though i DO NOT want them referring people to Klimas if she's going to say anything on GET or CBT since she said (quoted on usnews.com and elsewhere) essentially the same thing as CAA.

    I think that in the meantime, caa should solicit a group of patients to speak to the media; either a newly formed informal group or a group of people who could be associated with MCWPA to whom to refer media inquiries.

    Kim obviously should step down. short of that a move to EVP or COO with a reduction in salary and benefits from approx $178K to $50K.
  18. Dolphin

    Dolphin Senior Member

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    What is CBT

    If people want to know what the nuts and bolts of CBT for CFS, the form of CBT that is seen as evidence-based for CFS, they could do worse than download the following:

    CBT treatment manual
    http://www.pacetrial.org/docs/cbt-therapist-manual.pdf

    CBT participant manual
    http://www.pacetrial.org/docs/cbt-participant-manual.pdf

    CBT means different things for different conditions or indeed there can be different forms of it for the same condition (the version used in the recent Lopez et al. study is different from the PACE Trial). I don't have time to go into more details myself.

    They're not short. But I was on lists for years having discussions and hearing people talk about CBT and it clarified some points.
  19. CBS

    CBS Senior Member

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    A core element of CBT as used in the PACE Trial (and as used in all other forms of CBT with which I am familiar) assumes that there are cognitive and behavioral "maintaining factors."

    This is just one example from a portion of the assessment form on page 43 of the "CBT Therapists Manual" (my underlines and color changes).

    There are numerous similar presumptions but this gets at the core notion of the so called "maintaining factors."

    I am sure that posting on support forums is pretty high on the PACE list.
  20. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    I will NEVER listen to the quackery proposed by these idiotic theories. It goes against all my instincts, my personal experience, and conventional medical wisdom. It is equivalent to telling a person who just had a chemotherapy treatment: "Go run around the block a few times and not only will you feel better, your cancer will disappear." They need to open their eyes and expand their thinking and acknowledge the many physical abnormalites proven to exist in ME/CFS, the real disease as defined by the Canadian Consensus Criteria. But then, the kingdom they have built up for themselves would disappear. Their stance of telling patients to ignore what is going on in their bodies and to listen to them instead is BIG BROTHER in a most egregious form. The ME patients in the UK know it and we all know it. "Don't think for yourself, don't acknowlege your experiences, just follow us." What nonsense! I have had ME/CFS for many years and have built up a tremendous amount of knowlege about the disease, both from personal experience and from good bio-medical scientific research. I don't FEAR activity, nor do I FEAR anything else that may make my symptoms worse. The only thing I fear is the harm these psychiatrists have done to the many people who suffer from a true organic illness.

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