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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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CAA is Listening

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

  1. Koan

    Koan Be the change.

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    If people knew only about RRMS and not PP and SP, there would be far less interest in it.

    And, yes, what Jenny said about MRI. Imaging technology changed everything especially for those with RR MS who languished exactly as we do before that technology identified RR as the same disease as PP and SP.

    But, I do sometimes wonder if the over-reliance on MRI is not now sweeping some with ME into the MS basket.

    Tricky stuff, all of this!
     
  2. gracenote

    gracenote All shall be well . . .

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    I think your entire post is excellent, Dr. Yes. I particularly like the summation you provided that I reposted above. I don't know whether to applaud or say Amen, so I will just say thank you for taking the time to articulate this. I very much appreciate it.
     
  3. gracenote

    gracenote All shall be well . . .

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    Cort, I think the article you just posted to the home page is a great example of why what is being said on this thread, and what is being begged of the CAA, is so important.

    Emergency at the Emergency Room

    Why aren't these emergency rooms, these doctors and medical personnel, taking CFS seriously? The CDC has done its job of misrepresenting us, of diverting research funds, of giving us this horribly useless and stigmatizing name, of watering that down even further, and then of making light of, through Reeves, the most exciting research we've had in a decade. Who, besides the CAA, is in a position to really put something else out there so that the kind of treatment you mention happening in the emergency room doesn't continue? Who else can counter the stigma that has been bequeathed to us by the CDC?

    We are passionate about the CAA because someone needs to stand up for us in the realm of public opinion and in the job of educating our doctors and health care providers. That won't happen as long as we keep getting saddled with any hint of ME/CFS being a psychological problem helped by psychological techniques. There will be plenty of time to focus on stress reduction later. The time right now is to put out an unequivocal message that we are dealing with a real disease that needs real medical support. Period. Otherwise, we will continue to have to hide from our own doctors the name of our disease so that they won't dismiss us in their haste to be rid of us. Emergency rooms will continue to be a dangerous place for all of us, no matter our current state of functioning.

    Ahhhh . . . I think I feel better now.
     
  4. mezombie

    mezombie Senior Member

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  5. Koan

    Koan Be the change.

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    Zombers,

    Both of the links in your post are excellent and there is much about them which would benefit the CAA strategy!

    Koan
     
  6. Otis

    Otis Señor Mumbler

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    Amen

    I don't know how to applaud on the keyboard, so I'll go with amen. Thank you Dr. Yes. We cannot afford to let CBT be used as an entre to denying the true, horrible, physical nature of this disease. I can accept the notion that mind-body methods may help some people but on the large stage where subtlies are lost on the majority, I ask the CAA to take the tough stand that this is a PHYSICAL illness and needs to be recognized as such. Until the physical cause(s) are identified and our invisible illness is validated and properly funded we cannot afford to give an inch.

    Otis
     
  7. Kati

    Kati Patient in training

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    What Gracenote said... Exactly the way she said it.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Our Most Disabled Need the Most Awareness and Help

    Kurt- I don't agree with the above. How is it unethical to focus on the 25% most disabled. I don't think they or the other 75% would object; instead, as Dr. Yes pointed out, it would benefit everyone. I don't think anyone is saying put a picture of someone in a hospital bed and then say this is the typical case. We would be explicit about it being 25% of patients. I think that picture, of Lynn G. is it (?), on the top of the 25% homepage should go on the top of the CAA website, perhaps in addition to the tired, but otherwise healthy looking people now pictured there. I really don't think there is the remotest danger of a focus on the most disabled resulting in society and physicians being duped into thinking ME is more disabling than it is as the Wessely school is now trying to claim. If there is a general panic and Congress starts pouring $10 billion a year into ME research, rest assured we can set them straight. The biggest negative consquences I can think of is that Dr. Wessely's feelings may be hurt if people take ME seriously, but I can live with that qualm.

    Of course we should say that it is a complex disease with perhaps several causes, but hammering at that to the exclusion of other, more helpful messages, is not the only way to stay moored in reality.
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    What Kati said.
     
  10. Cort

    Cort Phoenix Rising Founder

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    I think my disagreement is that there's this general sense that the CAA 'promotes' CBT to the exclusion of other treatments or thinks that behavioral therapy is the answer or anything close to the answer to CFS. I don't get that at all. I understand peoples angst -particularly those in the UK - about seeing Peter Whites little blurb there - but again - that was just ONE part of that brochure. The fact that Dr. Peterson on there as well doesn't seem to interest anyone at all! I really don't get that. Why is there no discussion of the fact that this entirely immune oriented doctor is prominently featured in that brochure? HE has very FEW studies that can back him up - yet there he is. Perhaps doctors reading that brochure will ignore him as much as the patients do, I don't know.

    The fact is that as long as studies show that therapies like that show some benefit to some patients the CAA is bound to include them in their treatment overview. Including them in one section of a brochure does not mean that every doctor is going to pick on that exclusively.

    By the way - whoever mentioned it - I am not doing CBT.

    The CFIDS Association in collaboration with Dr. Bateman and Dr. Lapp put together a physician education program that educated 30,000 health providers in its first year. I hope they get SPARK off their website and get their provider program on there. Should they be more hard hitting in areas? I've said so for a long time. In several ways they're a very conservative organization. I hope they do swing out more.

    I really cannot understand these statements. The CAA was created by people with this disorder. Kim McCleary is surrounded by people with this disorder. They've ALWAYS taken the stand that this is a physical disorder. Stating that behavioral therapies can help with symptoms is not stating that this is not a physical disorder. Dr. Klimas says that! And she's burrowing away into her immune studies.

    I do agree that we have to be careful with statements. I agree, particularly in the UK, that positive statements about stress reduction therapies are problematic given the prevailing trend. The problem in the US is not necessarily too much behavioral research; its just too little research period.

    After reading the Sparks document, though, I can more easily understand the concerns. (see below)
     
  11. jackie

    jackie Senior Member

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    Yes! to what you said! (Dr. Yes, Gracenote, Koan, Gerwyn, Justin, M'zombs, Katie & the rest...and Otis - Yes! Not ONE INCH!...I feel just as passionately about this - but haven't the "words"...so Thanks) j
     
  12. Cort

    Cort Phoenix Rising Founder

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    SPARK - I've actually never read this carefully. Here's the brochure on management:

    I agree that this is quite problematic:

    Its all true but the fact that the mental and emotional stuff is presented first is quite disturbing, I completely agree.
    I would not that it regards 'management' not treatment.

    Treatment - In the treatment section they do mention that things like COQ10, NADH, B12, EFAS can be effective. They have acupuncture and relaxation therapies (yoga, etc.), sleep medications, blah, blah.

    They do note the problems of postexertional malaise (good), exercise program (OK), diet and nutrition. They do have a small section on severely ill patients.

    A large section on CBT;

    Note that it's limited - fine with me.

    Essential? Essential is if stress is causing the disease but removing stress does not necessarily cure CFS - so its not essential its helpful - big difference! Otherwise fine with me.

    Patronizing but still no mention of anything approaching a cure. However I had a rather depressed feeling after reading it. Its not that what they said about CBT was so bad, it was the amount of space it took up in the booklit. Blah! Its clearly presented as the main treatment for CFS. Not good. The limitations of the treatment should have been outlined more.

    Really a very poor document and one the CAA has to take responsibility for. There's nothing on medications for orthostatic intolerance, nothing on viral treatments, nothing on Ampligen....CFS is a very variable disease and people try lots of different things and some of them do work. There's nothing on many of the things that do help CFS patients. The CDC's imprint is all over it.

    The CAA did create a new program but why is this still up there I have no idea.

    I can understand some of the anger after reading it. I'd never really read it closely before. It does not represent the world of treatments the CFS community uses and sometimes uses quite effectively. Poor stuff.
     
  13. gracenote

    gracenote All shall be well . . .

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    But somehow, Cort, the message isn't getting out there where it's needed — that's one of the things you're saying in your article about emergency rooms. How do we change the message that is being heard? We can go back and forth forever about what is being said and being done by the CAA and get nowhere.

    I think we all agree that what is being heard by the general public, and most importantly by doctors and healthcare practitioners, is not adequate. How do we change that? Who is in a position to change that?

    I'm suggesting that our patient organization, the CAA, is the only organization that is in a position to change the public perception about ME/CFS, and that for whatever reason (and let's not keep arguing about this), they have not adequately represented us. Even you say they can do better. Can we put our heads together and come up with what can be done differently so that we change what is being heard, not just by us as patients, but by the community at large? At some point it no longer matters what is being said and being done, what matters is what is being communicated.

    Does your emergency room doctor know what ME/CFS is? Can you trust that if you have to go, that there will be someone present who can advocate for you? And if not, can you tell them where they can get excellent information so that they can treat you and not harm you? Quick — this is an emergency.

    Help!

    ----------

    ETA: This was written before Cort's latest post. Thanks for the above, Cort. And I still mean what I said.
     
  14. Cort

    Cort Phoenix Rising Founder

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    This is my sense of the CAA in these different areas:

    • Actually very good at finding ways to get out the idea through the media that CFS is a real and serious disease; ie the media campaign going. (Unfortunately it was tied to that SPARKS document)
    • Very conservative in the treatment area. The SPARK document illustrates that very well. Of course we must realize that there are very few good treatments! but still they have been far more conservative than they should be - and I can see where the questions regarding their stance on behavioral therapies comes to the fore. Honestly, I think they made quite a mistake with that.
    • Very innovative in the Research area; the CAA, in fact, may be the most innovative CFS research funder we have; they were important in elucidating orthostatic intolerance, funded DeFreitas first retroviral work, funded the repeat exercise studies, now doing mitochondrial brain studies, vascular studies, etc.
     
  15. Kati

    Kati Patient in training

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    I would really like information on what needs to be tested to rule out other diseases and to confirm ME/CFS. There is a lot of confusion out there in the doctor world as of what is CFS, and whether it is appropriate to diagnose with ME/CFS. Canadian criteria, diagnostic tests (blood and imaging) are required to provide a comprehensive diagnosis. It has to go beyond a CBC and chemistry, and a chest X-ray. It baffles me when a GP and a rheumy are not able to order viral titers properly. There is no knowledge about total blood volume. Perhaps emergency doctors should know about that. So if you end up in ER because you passed out waiting at the till and banged your head, they'd know you're already hypovolemic.

    Dr Hyde finds differential diagnosis while researching the patient. He's found MI, diabetes, a brain tumor, lung cancer amongst other things. Doctors in a family practice need to learn to investigate, and not hurry into a dead end diagnosis they know nothing about.

    Thank you Cort for your latest post re Spark document. I really appreciate you taking a second look and a critical eye.
     
  16. Cort

    Cort Phoenix Rising Founder

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    I will say that this

    is true. The CAA appears to me to often rely on published studies; this is a strength and a weakness - it makes them credible to the outside world but if you do that you can also end up creating a treatment document that focuses on a very few treatments - most of which are behavioral. It just happens that few treatment studies on other types of treatments have been done.

    The CDC is probably never going to publicly promote any treatments that have not undergone studies. They were not going to fund a physician education campaign with other stuff in there. That's one of the compromises the CAA made.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Now to the CAA's new Physician Education Program:

    http://cme.medscape.com/viewprogram/17442

    Unfortunately the credits have expired (!) but its far, far better. Yes, there is stress reduction, behavioral management in there - as there should be for any chronic illness really - but its embedded with a framework of other treatments. I would give it my seal of approval.

    For those worried about the impact of the toolkit on their doctors; this program reached more people in a couple of months than the CDC's did in 5 years.

    For one thing it states:
    And

    Other Symptoms

    And this:

    As well as this

    And

    plus quite a bit more - its a rather long program
     
  18. Navid

    Navid Senior Member

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    CBT/GET Dangerous especially for newly ill/uniformed patients

    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.


    Yes, Yes, Yes Dr, Yes:

    CBT/GET were the first things suggested to me when i became ill 6+ years ago...here in SF...these approaches were suggested to me by Dr's at UCSF, CPMC, Stanford, UC Irvine, UCLA and even lil ol' Alta Bates...yes I went everywhere trying to find out why I no longer had an ounce of energy, couldn't stand for more than 5 mins, had SOB, anxiety, heart palps, all over bady pain...etc...this after 38 years of a highly active, healthy life. Each and everyone of these first 50 or so docs said i must be depressed and need to start moving around some more.

    Wow, how did i suddenly become depressed for the first time in my life and it completely disabled me physically...that's the CRAZY part and how could i move around more when I could barely walk to the bathroom unassisted!?!?!? But the more I protested this diagnosis and treatment plan the more they considered me depressed, unwilling to try, combative (weakly but still) and in denial.

    This is WHY the CBT/GET treatment proposals are dangerous...I WAS and still am very physically sick and the first line treatment proposed to me over and over again were psychological and excercise.

    Please do not defend this approach, it is EXTREMELY insulting and dangerous to those of us whose health has been stripped away.

    I will NEVER forget when the infectious disease doc at CPMC, upon release from my 1st of 5 hospitalizations in so many months, told me I needed to go to Hawaii and relax!!!!!!!!!! I had in fact just returned from Hawaii where I had finally burned and crashed from this illness.

    I was bewildered by how I was treated by the medical establishment...viewed as a crazy, depressed, skinny, almost 40, white woman w/an unexplainable disease...so we'll just tell her to go to therapy, exercise more and take some anti-depressants. And in my desperation, I did in fact try all of those things...but of course none of them helped...because that is not what is wrong with me....I am physically ill....and need to be treated as such!!!!!!

    one last insult to injury...my family and friends (except my super fantastic husband) started beleiving all the things the dr's said....despite knowing me my whole life...why? because those were the options presented to them and they were raised to trust and believe in the mainstream medical system.

    it's been a long difficult journey and i now know so much more about my illness, but it would have been nice if the docs i saw at the start of this saga were able to offer my better advice and treatment than cbt/get!!!!!!!:Retro mad:
     
  19. starryeyes

    starryeyes Senior Member

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    ((((((lisa))))))

    I can't believe this happened to you now, here in the Bay Area. That's totally shocking and very upsetting.

    I do hold the CAA responsible for this mistreatment you've endured. I recently learned that UCSF is one of the main places Wessely has his talons stuck into and is promoting CBT and GET to patients with CFS with plans to expand these harmful practices.

    I'm just saddened and horrified by this.

    Cort, I'm very glad that you are looking much more closely at the materials that the CAA is posting online and that you see some of what we are complaining about.

    I don't care how much good they do, look how some PWC are being treated! What happens to one of us can easily happen to all of us.
     
  20. Cort

    Cort Phoenix Rising Founder

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    Teej - I am looking - are you. Did you see my last post?
     

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