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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. rebecca1995

    rebecca1995 Apple, anyone?

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    akrasia: Please publish your post as an op-ed essay in The Charlotte Observer. You display a sophistication that puts the rest of us to shame.
     
  2. Koan

    Koan Be the change.

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    Rebecca,

    Thank you for your most illuminating post. While my batteries take a better charge than yours do and run for a longer time, the principle is exactly the same. So, the strategy to recondition me from my current level of functioning to a higher one falls apart in precisely the same way it would for you. There is something fundamental to this illness which causes this pattern. Thank you for describing it so vividly.
     
  3. jackie

    jackie Senior Member

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    rebecca...wonderful post - you said it all (and so graphically...that feeling of total muscle fatigue). For you it's washing/brushing your hair, for me it is sewing a few stiches with a needle. I can type this 1 letter at a time and slowly I'm able to type a long post....but to sew a line of stitches I must hold a piece of cloth in one hand a threaded needle in the other, balancing everything, and pull the needle in and out of the cloth. I can only repeat that for a few stitches before giving out. The more I try to pull that needle through, the WORSE I get! Such a basic and simple act - like Rebecca washing her hair.Hard to believe unless you have to regularly experience it first hand. no matter how many times those of us relate our experiences... it's still almost incomprehensible. j
     
  4. starryeyes

    starryeyes Senior Member

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    Well it makes sense in light of the email Dr. Judy wrote to someone here about how there's a worldwide effort to squelch the WPI's findings and cut their funding completely. The horrible thing about that is that given the reaction from the CAA it looks like they're in on this.
     
  5. starryeyes

    starryeyes Senior Member

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    I think the CAA should just take down the 2 CMEs they have up right now and then wait on doing the rest. How long would that take? 5 min. or less?
     
  6. starryeyes

    starryeyes Senior Member

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    Koan, Rebecca, jackie and All, the SPARK! Toolkit is still online and accessible to all in full and it's the same link as before:


    http://www.cfids.org/sparkcfs/clinical.pdf

    You need to scroll halfway down the page to get to the parts about GET and to see the picture of Peter White and his quote stating that CBT and GET are great treatments for us and have never caused us any harm.

    This is just one webpage of the CAA's CME SPARK! materials. I think there are about 11 others and they all tout CBT and GET for us. Stuart listed them all near the beginning of this thread.

    Doctors just can't get credits from it anymore but many thousands did. The damage has been done already so why can't the CAA just take it down? Supposedly they have some agreement with the CDC that it has to stay up for a certain number of years.

    I wonder if the reason they're complying with this is because they're still receiving funding for it from the CDC?

    Correct me if I'm wrong here, Jennie.
     
  7. Gerwyn

    Gerwyn Guest

    please dont tell me that the CAA gets funding from the CDC that is like the American forces being funded by the taliban
     
  8. starryeyes

    starryeyes Senior Member

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    Just to reiterate: Here's the link to the CAA SPARK! Toolkit and it's the same link as before:

    http://www.cfids.org/sparkcfs/clinical.pdf

    You need to scroll halfway down the page to get to the parts about GET and to see the picture of Peter White and his quote stating that CBT and GET are great treatments for us and have never caused us any harm.

    This is just one webpage of the CAA's CME SPARK! materials. I think there are about 11 others and they all tout CBT and GET for us. Stuart listed them all near the beginning of this thread.

    Gerwyn, that's why many CFS patients stopped trusting the CAA. The CAA claims it has broken ties with the CDC but then Cort tells us that the CAA is beholden to contracts it made with the CDC regarding materials like the SPARK! campaign.

    However, given all the information the CAA now has about how damaging those materials have been I think they should at least be consulting a lawyer and taking those materials off the web completely as soon as possible and/or expressing an apology to the CFS community for contributing to the ruination of many lives.

    They have other CME materials we've been discussing here that are equally as bad.

    How can the CAA make this right and how can they make up all of the damage done to the CFS patients?

    By admitting they were wrong to ever publish that propaganda, doing everything they can to remove it from the web and by publishing information on their site that corrects the wrong information they originally used to train all of our doctors in "treating" CFS and by reaching out to reeducate our doctors as quickly as possible with the correct information about the hazards of exercise and the futility and harm caused by using CBT for ME/CFS.

    But can we even trust that the CAA fully understands the harmfulness of CBT/GET?
     
  9. Koan

    Koan Be the change.

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    Now I'm beyond confused. If Peter White holding forth on CBT & GET remain, what on earth was changed?

    Here I quote Peter White from: http://www.cfids.org/sparkcfs/clinical.pdf

    Is this not the contentious material? Is this not Sparks? Is this not Peter White preaching CBT & GET? Is this not what we were told was now gone? Maybe I misunderstood. What am I missing?

    ETA: And, yes "kinesophobia"! Does the CAA really preach that we have faulty illness beliefs in this blatant fashion?

    Why?
     
  10. starryeyes

    starryeyes Senior Member

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    Hi Koan and Lily. I think we were all posting around the same time. Please go back and read what I just added to my last post in navy blue so we can all be on the same page and thank you Koan for Copying and Pasting some of the SPARK! materials to here. I don't have that capability.
     
  11. Mithriel

    Mithriel Senior Member

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    Wayne said

    I think my experience is common to many of us. I have days when I am able to do much more. I can cook food to freeze for bad times or go out for the day. There is no gradual increase. The change is abrupt because what determines my activity level is the underlying disease process not any state of deconditioning or fear of exercise.

    If the cause of our illness is found and a treatment given I will be able to do activities immediately. I might have to build up if I want to do exercise like running or swimming and I may never get full function after so many years of illness but I expect to be able to spend a day out of bed, to shower and to cook.

    That is why all reference to activity improving our function must be removed from education materials. Our activity level is dictated by the underlying fault in our bodily system NOT the other way round. It is the psyches who have said this and there is no evidence for it whatsoever.

    Mithriel
     
  12. Dolphin

    Dolphin Senior Member

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    I think it was mainly designed like an issue of CFIDS Chronicle - so designed more for lay readers.

    I thought there were some nice, easy-to-read articles, in it.
    However, it was spoiled for me by the Peter White piece (there was the odd other little bit I didn't like) and that spoiled that for me, in terms of using it in any way to educate doctors. For example, in 2006, we sent the Canadian Overview to all Irish GPs. In 2008 and 2009 we sent some basic information incl. ticksheets for the Canadian definition and also the paediatric definition (which was like the Canadian definition) to all Irish GPs. We included in it a two page sheet with free information they could order from us (leaflets, booklets, DVDs, books, etc). But because of the Peter White article, there was no way it was going on that list. But, as an aside, as somebody who runs a group, I can understand if they have thousands of copies left, why they might want to use them in some way rather than bin them. I would just give them to patients not doctors.
     
  13. Gerwyn

    Gerwyn Guest

    If the CAA has any links with the CDC then I would not trust them at all.it is like the infamous uk so called Me advocative groups which are directly funded by the UK government.Guess which ones support CBT and GET but pretend not too?They are also the ones that actively promote the Oxford criterea and deem this criterea as appropiate for selecting patients for the pace trial. The situation seems to also be happening in the USA.Beware wolves in sheeps clothing!
     
  14. jspotila

    jspotila Senior Member

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    For what it's worth, answers to questions

    I can't comment on whether there is a worldwide conspiracy against WPI, because I have no factual knowledge of one. I can completely refute that the Association is not a participant in any such conspiracy, worldwide or otherwise. I would appreciate it if people could refrain from making such accusations against the Association (or anyone else for that matter) without facts to back up those accusations.

    Actually, we have. If you read the report of our visits with Congressional appropriators, you will see that we brought the XMRV findings to their attention and used it as part of the basis for our budget language.

    I will try to clear up the confusion.

    There are two CME courses, but neither is under the direct control of the CFIDS Association. The first one is the Medscape course, and as I explained as recently as yesterday, that course is on Medscape's site and under Medscape's control. The second one is the CDC's CME course from 2005-ish. Kim McCleary has asked the CDC to remove her name from that CME but has received no response.

    There are two documents that have been referred to as "Toolkits" which may be contributing to the confusion. The first is the Physician's ToolKit (it says Toolkit on the cover) and that has been removed from the Spark site, as I said. The article that Tee is talking about is actually "Clinical Care for CFS" written by Marcia Harmon for the Chronicle in 2005-2006. The pdf link does work, but the article cannot be accessed from the Spark site because it is no longer linked.

    Here is what is actually linked from the Spark page for healthcare providers: article from the American Academy of Pain Management (2010); Canadian Case Definition; Development an; Individualized Treatment Plan for CFS; Pharmacologic Treatments for CFS; Pearls of Wisdom from a CFS Physician; Nurses Can Play a Key Role in CFS Management; Medications Used to Treat Orthostatic Intolerance; Think Inside the Envelope; Managing Your Energy Envelope; Doc to Doc: The Skinny on Exercise and CFS; Visual Dysfunction in CFS; Gastrointestinal Problems with CFS; Occupational Therapy for CFS; Differentiating CFS from Depression.

    Finally, the Association does not have an agreement to keep the Spark site up for "a certain number of years." I don't know where that rumor comes from. I have been saying for months now that the contract is almost over, and the future of the site will be re-evaluated at the conclusion of the contract. The contract is in its last month or so (under a no-cost extension to give staff time to finalize the reporting requirements due). Despite that, the staff has spent time reviewing and revising the site over the past month.

    To sum up:
    • The Medscape CME is under Medscape's control
    • The CDC CME is under CDC's control, and they have not responded to Ms. McCleary's request that her name be removed
    • The Physician's Toolkit is not linked from the Spark site
    • "Clinical Care for CFS" is not linked from the Spark site, though it still exists on the server
     
  15. rebecca1995

    rebecca1995 Apple, anyone?

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    Three words: Oh. Mah. God.

    The only difference is that it's no longer accessible from the main website --> Spark --> View Campaign Elements.

    I'm speechless.

    p.s. Just to clarify, this brochure (with Peter White) is the Clinical Care brochure (different from the Toolkit for Doctors, featuring Bill Reeves). We were told in January or February that the Peter White one had been taken down!

    [Edit: I posted at the same time as Jennie.]
     
  16. Dolphin

    Dolphin Senior Member

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    :Retro smile: Thanks Maarten. We do what we can.

    I just looked at the back of the printed copy I got at the end of 2005 or early 2006 as a member of the CAA. It says, "we hope you enjoy this special issue of the CFIDS Chronicle", so I believe that was its main purpose and it was designed so that it would not be too hard for their members to read. They then decided to make use of it in other ways.

    I can see where you are coming from. I would be reluctant to have such articles recommending exercise also and the Peter White article would not be in anything I would put together. It is a bit of a dilemma. It could be ripped out or perhaps other articles could be included at the same time. I got a few copies but just lent them to people who I thought wouldn't be taken in by the Peter White article.

    I don't like telling other group leaders what to do too much but that makes sense to me.

    Thanks Maarten. Please keep sharing your own thoughts and insights also.
     
  17. Koan

    Koan Be the change.

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    If that fix can be done, in my opinion, it most certainly should be done.
     
  18. starryeyes

    starryeyes Senior Member

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    Can't we just have a giant bonfire? :victory:
     
  19. starryeyes

    starryeyes Senior Member

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    The CAA's CME (Continuing Medical Educational) materials Spark! was written for doctors so they could learn how to diagnose and treat ME/CFS. They got credits for taking the course. Many thousands have taken it.

    That's what my old Sig line was referring to.

    I really appreciate seeing people here from other countries caring and taking a stand about the harm the CAA is causing ME/CFS patients. I do believe they are affecting us all but I never expected this kind of support.

    Here's the old thread where I went through that CME from SPARK! line-by-line in December. Do you remember?

    http://www.forums.aboutmecfs.org/showthread.php?1911-The-CAA-Pamphlet-to-Educate-Doctors/page2

    It was Stuart who first brought these materials to my attention and I decided back then to take the first link he gave and thoroughly go through it.

    Rebecca- I'm still laughing at your "Oh. Mah. God." :tear:
     
  20. rebecca1995

    rebecca1995 Apple, anyone?

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    Thanks for posting this summary, Jennie. I have a better understanding of the situation now.
     

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