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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. Lily

    Lily *Believe*

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    I soooooooooooo agree. Disappointing too, and makes me angry.
     
  2. Jessrose21

    Jessrose21

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    But, these pain conditions are often not developed until after contracting CFS, so I agree with the overlapping conditions part. My gyno specialist I see for vulvodynia says he sees a lot of women with vulvodynia who have CFS (and low blood pressure, which he thinks contributes to the V problem.) Most of my pain problems are related to CFS and related GI issues which have caused bizarre nerve issues in my back (and elsewhere, ahem.) I had the TMJ before I got sick.

    I do see your point, that CFS isn't a chronic pain condition, however, it does CAUSE many chronic pain conditions in many sufferers.
     
  3. The Phantom

    The Phantom Member

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    The problem with pain

    I agree with your gyn that vulvodynia in women with ME/CFS may well be caused by low blood pressure/low blood flow. Possibly TMJ in men and women with ME/CFS is caused by the same mechanism. I'm having a lot of difficulty fitting endometriosis into this theory. So all 4 diseases are not fitting together for me. But even if they can all be related to abnormal blood pressure/low blood volume, which are known to be present in many (most? all? -- we don't know because the appropriate research hasn't been funded) people with ME/CFS, why not talk about abnormal blood pressure/low blood volume diseases which lead to pain? This focusses on the cause, not the symptom. There are lots of causes for pain. You can treat the pain, but if the reason for the pain is low blood volume no amount of morphine is going to cure the pain. Lack of blood flow to any part of the body is painful. In contrast, if you treat the low blood volume the pain (wherever it is, gut, jaw, ahem) will go away. Cured. And, even better, if you figure out the cause of the low blood volume, maybe you can treat or even cure that.

    The other thing about pain is that it's pretty common, like fatigue. I personally would like to see the CAA focus on the aspects of ME/CFS that are not common, like post-exertional malaise and orthostatic intolerance. In my opinion, CAA is not keeping its eye on the ball when looking for the cause or causes which, once found, can lead to cure(s).

    The other thing the CAA is not doing is endorsing the Canadian Consensus definition. Until they focus on the group of patients who actually have ME/CFS they are unlikely to make much progress.
     
  4. Jerry S

    Jerry S Senior Member

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    Yes! This is really fundamental.
     
  5. Gerwyn

    Gerwyn Guest


    Absolutely correct doing anything else is a complete waste of time and money
     
  6. jspotila

    jspotila Senior Member

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    I encourage you to view the slides and video from the webinar. The presenters demonstrated the overlap of symptoms between CFS, endometriosis, TMJ and vulvodynia. There was also a preview of a new campaign: The Campaign to End Chronic Pain in Women. This campaign is being funded by Pfizer, and launches on May 19th with a Congressional briefing in DC. Four U.S. Representatives are scheduled to speak at that event. The CFIDS Association and other organizations provided a great deal of input into the campaign, although none of the organizations contributed money nor were they reimbursed for their work.

    The Association does endorse the use of the Canadian Consensus definition. Post-exertional relapse is a required symptom for subjects in the SolveCFS BioBank. We refer to it in much of our communications, and several of our funded grants are studying how the body responds in post-exertional relapse.

    The Association understands this illness and has its eye on the ball: to stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
     
  7. starryeyes

    starryeyes Senior Member

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    It doesn't surprise me a bit that the CAA has no clear understanding of what ME/CFS is. I think they're doing a good job with the webinars when you take this into consideration.

    What's frustrating is that they call themselves an advocacy group for us when they've actually done terrible harm to us by miseducating our doctors about ME/CFS.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think pain is an important part of ME, but I would like CAA to have a focus on symptoms that are less common in other diseases esp. PEM and esp. in it's educational efforts.

    FYI, the webinar was discussed on this thread:
    http://www.forums.aboutmecfs.org/sh...lapping-Conditions-Alliance&highlight=webinar
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I trust Roy's judgment on this as this is an area of deep expertise for him. I have some formal schooing in the practicalities of law-making and administrative agencies and it is my impression that we should not have these results if a competent job was done lobbying. lobbying works, even by an organization that is not well-funded if the subject matter has merit as we have. There needs to be more lobbying and it needs to be done better.
     
  10. Otis

    Otis Señor Mumbler

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    So in other words scarce CAA money and staff time are going into this.
     
  11. jspotila

    jspotila Senior Member

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    Not money, "just" staff time. Staff time is a scarce resource for the Association, as I have said before. However, Pfizer planned to proceed with this campaign, and the participation of the Association and the other organizations had a dramatic effect on the content of the campaign. We know CFS affects more women than men, and we know that women do not receive the same healthcare attention or belief compared to men. A woman reporting pain to her doctor is generally not treated the same way as a man reporting pain. These co-existing or overlapping conditions have an $80 billion annual impact on our economy. Our hope is that the combined numbers, along with the attention and dollars Pfizer brings, will succeed in getting the attention of lawmakers, press and public. As I said, four US Representatives are participating in the launch event on May 19th - unprecedented in CFS advocacy.
     
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Sounds like it has some good potential. I think leveraging the 'women's health' aspect is a good idea- it's gotten outsized funding for breast cancer imo.
     
  13. Otis

    Otis Señor Mumbler

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    Well, I doubt that a webinar and travel, if nothing else, quite equates to NO money.

    That said, I agree that women are probably more often disregarded/dismissed and that this is an opportunity to bring awareness that should be seized.

    So please do it well and bring in significant money to and awareness for our cause.
     
  14. oerganix

    oerganix Senior Member

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    Parity in cfs funding now!

    Adding insult to injury, these 3 diseases are slated to get a combined amount of over $32 million :eek: next year in research money from NIH and CFS is slated to only get $5 million- the amount the Whittemore's spent getting WPI going!!!

    http://report.nih.gov/rcdc/categories/

    It really ticks me off that MALARIA, with 1300 cases in the US last year, all from those who can afford to travel to malarial countries, is going to get $116 million! :Retro mad:
     
  15. oerganix

    oerganix Senior Member

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    It would seem that with Pfizer's involvement, the focus will be on developing more drugs to treat pain, possibly more effective for women's pain, which is a symptom and not the most important symptom, of CFS/ME. So, when (and IF) you get "the attention of lawmakers, press and public" what will you do with it?

    We really don't need another PILL, as in, here take this pill and go back to work. We need to find the cause and a cure of our disabling symptoms, not another drug to mask them.

    I have to wonder about the "four US Representatives participating in the launch event". (Getting Pfizer campaign contributions?) If this is "unprecedented" CFS advocacy, what impression or accurate knowledge are they going to come away with, from a campaign that is focussed on pain, and funded by a drug company?

    If CAA had anything to do with getting them involved in this "launch event", I sure hope you got or can get some actual support for parity in funding for CFS/ME the disease, and not just for some of the less disabling symptoms.

    $116 million for malaria (1300 US cases); $5 million for CFS (at least a million UScases) in next year's NIH budget!
     
  16. jackie

    jackie Senior Member

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    good oerganix! thanks! i feel like screaming your "stats" from my rooftop! The more I repeat them - the madder I get........................................................................
     
  17. Gerwyn

    Gerwyn Guest

    Yes and I,m afraid that it provides clear objective evidence that the CAA strategy adopted over many years is not working
     
  18. starryeyes

    starryeyes Senior Member

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    Well it's not working in our favor but they seem to be doing very well for themselves.
     
  19. oerganix

    oerganix Senior Member

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    Funding parity for CFS research

    Ahhh, you noticed that ;). All the more reason to send our research donations to WPI, eh?:D

    One problem I have with the CAA donation/research policies is that they collect the money first and then, apparently with little or no input from the patient community, they decide what research to fund. So, you have to have faith that they will spend your donation well.

    I'm afraid my faith in CAA was shaken long ago and so far, has not been restored. I am still puzzled and disconcerted by Dr Vernon's take on the Failure To Find studies vs WPIs research. Then coming out with GET/CBT materials and quotes from the psychobabblers from UK in the March newsletter really impressed me negatively. Depressing really, not to have an effective national level advocate.
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    splitting hairs :Retro smile:
     

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