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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. oerganix

    oerganix Senior Member

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    Quite right. Most of us also have lots of stuff that hasn't been done...a long "to-do" list that is never completed, so the idea that we should waste some of our energy on exercise is just cultish thinking...the cult of "exercise is good for you".

    Also, denialists and non-understanders need to grasp the concept of our "energy tanks". We are not like batteries that slowly weaken. We are like gas tanks that, once emptied, have nothing left.
  2. The Phantom

    The Phantom Member

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    How's the CAA doing?

    There is an interesting discussion relating to the original topic of this thread (How's the CAA doing?) here:
    http://www.forums.aboutmecfs.org/sh...tions-amp-the-Overlapping-Conditions-Alliance

    And I also agree with tomk's point that the problem with exercise programs is that we may need the energy we expend in trying to exercise more for other unexpected tasks later in the day or the week. So GET is dangerous.
  3. Dolphin

    Dolphin Senior Member

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    (My bold) Yes, I think this is one of the things we're fighting. All around us in society, the message is promoted with (almost?) religious zeal that exercise is good for you.
    If you exercise, you're good and if you don't exercise, you're like a "sinner" who hasn't seen the light.

    We're unlikely to change the world's view with regard to exercise in general which is why specific information for the illness needs to be clear.
  4. rebecca1995

    rebecca1995 Apple, anyone?

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    Indeed. At least in the US, that's partly because something like 1/3 of adults are obese. Now that scientists are questioning whether exercise results in weight loss, I bet mainstream medicine will place less emphasis on it for the general public. It'll be interesting to see if there's a concomitant decrease in how strongly doctors and the CAA promote exercise as a treatment for ME/CFS.

    The sad thing is, there's never been any credible evidence--a well-designed study using the Canadian criteria--that exercise improves function in ME/CFS.

    It's a shame when Zeitgeist substitutes for scientific data as the basis for an institution's position.
  5. Angela Kennedy

    Angela Kennedy *****

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    Oh my goodness, you've hit the nail right on the head there, Rebecca!
  6. Dolphin

    Dolphin Senior Member

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    Yes, guilt would seem like a good way to describe it. Guilt for not being able to care for their children as much as they'd like, similarly uneven relationship with partner, other relatives and people in their lives; guilt about state of one's house; guilt about one's appearance (not able to spend as much time/energy on it as would like) incl. if putting on weight as inactive; guilt for needing supports of one sort or another incl. financial as not able to work much or at al, etc. There are so many pressures to push oneself to the maximum which is not a good management strategy.
  7. Dolphin

    Dolphin Senior Member

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    Well said.
  8. Dolphin

    Dolphin Senior Member

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    Good points.

    Regarding graded activity/exercise for CFS, the evidence from RCTs isn't there for the severely affected. What evidence that exists is for the moderately and mildly affected. However there are lots of flaws with the evidence. For example, papers are showing that people aren't doing any more activity after doing CBT which involves regularly walks - they're substituting one activity for another. These patients can report on questionnaires that their "fatigue" and "physical functioning" is improved but this should be taken with a large grain of salt given they aren't doing any more activity in total. Also other symptoms apart from fatigue are generally not measured.
  9. lansbergen

    lansbergen Senior Member

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    Moderator Note: Reference deleted because it was felt to be offensive to Dutch forum members.


    Maarten, do you realise that includes all dutch members of this forum and their ancestors?

    What about all the other dutch people that suffered in concentrationcamps?
  10. Mark

    Mark Acting CEO

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    Moderator note: Maarten these last few posts about Holland have nothing to do with the CAA, which is the subject of this thread of course, and the majority of them have nothing to do with ME/CFS. The part that does concern ME/CFS, referring to your website, doesn't seem to have anything to do with this thread either. Some of the comments are also clearly offensive to Dutch people and the posts are in breach of several forum rules. Please would you remove these two posts, you may post them on your own site of course but it isn't appropriate here. If you don't remove the inappropriate material soon I will delete both posts in their entirety, this material just isn't appropriate here.
  11. Mark

    Mark Acting CEO

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    Maarten I do understand that these issues are all connected one to another for all of us, and that your own story connects all these issues, but I can't really see how this is anything other than off topic re: the CAA, and there's no question that this material was offensive for at least some dutch readers, even if not to yourself, since it has been reported as such.

    I'm sure you understand that I must aim to be objective, and having received a complaint I considered the forum rules, and it's quite clear to me that at least some of the content is in breach of those rules. I therefore feel I have no alternative but to ask you to remove the content. As you rightly say you can post this on your website.

    I will edit out the sections I mentioned and leave the ME part and the links, and hope that what remains is OK. I will have to just remove the lot of the Dutch section because it isn't practical to go through and attempt to edit it in detail. Of course if you are able to edit the original so as to maike your point without causing offence, then do so, however it still does seem to me to have no connection with the subject of this thread so it does seem that it belongs elsewhere.

    Best wishes to you also,

    Mark
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    What Do We Need More- a Biomarker or El Presidente for life?

    What do we need more, Ms. McCleary's leadership or a mitochondrial biomarker? I'd love both, but with our insanely low funding, I guess we'll just have Ms. McCleary. I mean we patients have no choice, it's not like the CAA Board, most of whom are patients or patient's family, has any authority to not renew her contract. It says in her contract she is el presidente for life. oh, wait, I'm reading the fine print- or would be if CAA were transparent and would trust us with looking at it- and hmm.....
  13. starryeyes

    starryeyes Senior Member

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    One thing's for sure, the CAA is not a Democracy.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    You're right, I should have posted it on the CAA thread. I'm moving it over there.

    it's obnoxious, but justifiably imo. Taking potshots at what CAA is doing can be positive and productive if it motivates change or makes people consider an important issue. I consider urging you to allocate very scarce resources more efficiently to be positive and productive.

    Plus when you're a big-baller stacking chips to the ceiling like Kim, you've got to expect some "hateration". Comes with the territory.
  15. jspotila

    jspotila Senior Member

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    Criticism of an organization's programs is fair game. Potshots are not. Are you suggesting that "hateration" is within the forum rules?
  16. Roy S

    Roy S former DC ME/CFS lobbyist

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    This is from last December. I know the state leader she refers to and how very important that state is politically. So does Kim McCleary. Some people say lobbying the US government hasn't worked. It doesn't when it's not done correctly. Grassroots organization is essential, but it hasn't been done.


  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Well, I wasn't using 'hateration' literally; I'm not criticising just to attack for no good reason because I'm jealous.

    Do the rules apply to posts about people not on the forum? There are plenty of unfriendly comments about White and Wessely that noone suggests violate the rules.
  18. starryeyes

    starryeyes Senior Member

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    Thank you for posting that Roy. Mary Schweitzer is completely correct. What does the CAA have to say for themselves?
  19. oerganix

    oerganix Senior Member

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    "What's missing is the outreach - and what's missing is the willingness to let go of power." Mary Schweitzer

    That about sums it up.
  20. The Phantom

    The Phantom Member

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    Does the CAA have a tin ear?

    Another thing that's missing is a basic understanding of the disease. ME/CFS is not a chronic pain condition. While many people with ME/CFS have pain our most disabling symptoms are post-exertional malaise, cognitive dysfunction and orthostatic intolerance. People with TMJ don't have these symptoms. People with vulvodynia or endometriosis (who are, indeed, exclusively women) don't have these symptoms.

    This is soooooooooooo frustrating.:Retro mad:

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