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Watch US CFSAC meeting NOW!

Discussion in 'Action Alerts and Advocacy' started by Hope123, Oct 11, 2010.

  1. Andrew

    Andrew Senior Member

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    When I was able to go to my support group meetings, I saw more men than women there.
     
  2. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Will videos of the meeting be posted on YouTube eventually?
     
  3. Otis

    Otis SeƱor Mumbler

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    Didn't Dr. Lerner try to speak IP and discourage exercise for the more severely affected?
     
  4. Orla

    Orla Senior Member

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    Hi Urban Travels. I agree with you totally. He might have altered his view somewhat but seems to be still clining to some of his old way of thinking. He mentioned the normal contraction on a single test but in the beginning of the talk but he should have pointed out that there is a possibility that it might be abnormal on repeat or exhaustive testing (did he point this out at any stage?), or even if the contraction was normal that there are other muscle or peripheral abnormalities in patients. I thought this was being selective with the evidence, and a bit worrying about the impression it could give the non-experts in the audience. It is possible I missed a bit towards the end as my concentration was going, but still if this is what I got out of the talk, someone else could have gotten the same impression.

    I couldn't see some of his slides properly, and I could do with seeing the talk again, but I thought it was interesting that he chose not to mention some muscle abnormalities.
    Orla
     
  5. ukxmrv

    ukxmrv Senior Member

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    George, I use the leg waxing test for the same theory and it does seem to be a very individual thing!

    My leg waxing pain was exactly the same before and after I got ill. It does vary at different hormonal times but only slightly.

    I'm also concerned about some the Light interpretations about exercise and about pain perception. What I'm not sure about is what the Lights say and what is spin others have attached to their work.

    I need to go back and look at that.
     
  6. Orla

    Orla Senior Member

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    George I agree with your general impression of the meeting. It was really depressing, and I didn't feel it was reflecting the state of science, or if it did we are in trouble! Unfortunately I missed the Nancy Klimas talk, I thought she made some good points during Q and A expecially about the XMRV situation, I thought she made LeGrice look ignorant :D

    I think it was an "up your's" to the patients, as there was no sense of urgency or even priority on the viral/XMRV stuff. What a change from last year. The most used word in LeGrices talk seemed to be contamination contamination contamination (ok admitedly I did not do a word count!). But he did not even cover this issue properly as he should have mentioned some of the arguments against this hypothesis for balance, and so that people could think over the issues in a more useful way.

    I have an open mind on this myself as I feel I don't know enough to say it is not contamination, and part of me thought that if good scientsts think it could be contamination then maybe it is. But if they pro-contamination people have to make their argument is such a bad way, by ignoring arguments against the contamination theory, that makes me think they are just following the departmental line and not giving us a scientifically reasoned view.

    Also caution was another often repeated word. I think he was telling us that the government is going to go VERY slowly on this. I would rather slow and well done, rather than hasty and badly done, but the impression I got was that slowness was almost being seen as a virtue in itself.

    Ron Glaser was terrible, back to the 80's.

    And the saved the worst for last, Houghton :eek: So WPI were the only ones who found XMRV???!!!! Lo and Alter did not confirm Lombardi and co even though Lo and Alter said it did.

    What a hideous day. Makes me think the CFSAC is a waste of time.

    Orla
     
  7. Snow Leopard

    Snow Leopard Senior Member

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    He must be projecting his own dislike of medical doctors onto CFS patients. ;)

    If we were talking about CFS in the UK, maybe he'd have a point - where men should avoid confrontations with practitioners like Sharpe and Wessely at all costs. ;)
     
  8. Dolphin

    Dolphin Senior Member

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    I just quickly read the transcript of Alan Light's talk. I see they are trying gabapentin. My guess is methods like this will just mask the pain. That can be useful in one way but doesn't necessarily mean one will be able to exercise more and get healthier: I think the problems with exercise are more fundamental. Anyway good that they are trying things.
     
  9. Hope123

    Hope123 Senior Member

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    Dr. Light's work that I've read has 70% CFS+FM subjects vs. 30% CFS-only. He had mentioned to me several months ago that he would be trying to include subjects with CFS-only as I thought the prior group would not be representative of CFS population in general (studies show 15-70% FM/CFS overlap so 70% would be really on the higher end). So I was glad to hear CFS-only data yesterday. Thus, I take most of the past info and work as more FM-related (or FM/ CFS overlap) than CFS only. It's not suprising that gabapentin is being looked at for FM; pharma/ clinicians have tried this medicine for a variety of unclearly defined pain conditions in the past.
     
  10. hensue

    hensue Senior Member

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    Fm or Cfs what the heck does it matter?? I was diagnosed with fibro and I have symptoms of cfs! I am also positive for xmrv and gabapentin I have recently been on for two months.
    It did not work! Was given a prescription at my pain clinic.
    Does not mean it might not work for someone else but it fatigued me more. Did not help the PEM pain.

    Ok I do not want to jinx this rare occurence. I have walked a half a mile 5 days straight and took 2 days off. Now I have walked sunday and Monday. This is weird I have had no PEM except fatigue not pain. God, I am sitting here do not write this you will not be able to get out of bed tomorrow.
    It is extremely dry here right now humidity is usually high. I read on the board someone posted breathe thru your nose and exhale thru your nose. I have been doing this and found out I usually breathe thru my mouth.
    Have no idea if this is making a difference but I am going to try again today. Diet M&ms plain high protein chicken and salad with dressing oh yeh breakfast half apple.
    Just had to share this weird phenomenom. Never had this to happen before never been able to walk without the severe pem at leat 12 to 24 hours aftward.
    mind you I am not doing much else.
     
  11. Cloud

    Cloud Guest

    99.9% of the time my PEM will nail me within 24 hours....but occasionally I get a 3-4 day free pass on the PEM. It's rare, and I often cannot attribute it to anything I have done....but it does happen. Be careful, the dragon loves it when we think we've snuck past the gate.
     
  12. xrayspex

    xrayspex Senior Member

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    HOUGHton needs to be CORRECTED

    Orla I heard HOugton (and obviously le grice or le gripe) were TErRiBLe to say the least, people are wanting Houghton to correct his factual mistakes today:


    Weiss' statements were on his own research on a different subject, and not proper science in ME/CFS.
    houghton had many errors on cfs/ XMRV research.
    Such as: WPI does not have the only positive studies. XMRV has been found in ME/CFS in Japan, in the nasal secretions of immunocompromised patients in Germany, in ME/CFS patients from various European countries tested by de Meirleir in Belgium, I think recently in Spain and Italy, and both WPI and Alter and Lo have found polytropic MLV in ME/CFS patients. Dr. Singh can see the cells in her microscope with her immunohistochemistry technique. Dr. Mikovits and Dr. Bagni have antibody tests, and there are the macaques. Most studies have not activated or amplified their blood samples for XMRV detection.
    and
    Why wasn't WPI invited to speak to this committee for the most up to date information on XMRV and ME/CFS?
     
  13. August59

    August59 Daughters High School Graduation

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    Who is that sitting behind the disability lady that is talking now? They have on "NIH what have you done for ME/CFS" and holding up "ACT NOW" posters?
     
  14. Frank

    Frank Senior Member

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    i think Robert miller
     
  15. Dolphin

    Dolphin Senior Member

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    Except exercise programs*
    I read the PACE Trial manuals. In one (I think it is the CBT Therapists one), there's a role play where a patient is expressing reservations about doing the treatment. Bascially they are persuaded to go along as there's not much else on offer!

    * This isn't meant to be a pointed comment at you, just my hobby horse
     
  16. Cort

    Cort Phoenix Rising Founder

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    Nancy Klimas is a treasure! I watching her and Lenny and Chris Snell and Ron Glazer and thinking they have the elements of COExcellence - right there -ready to go.....
     
  17. Cort

    Cort Phoenix Rising Founder

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    Dr. Light did a mild exercise test in comparison to the ones the Pacific Fatigue labs do - he's not nearly as stressing the muscles out as much. When Snell exercises patients to exhaustion their muscles stop functioning (contracting) on the second test far more quickly than do the healthy controls - that seems to be weakness to me.

    I think there is a dichotomy there that needs to be fleshed out - good points! I hope to interview him and will bring that up.

    I have no idea how powerful the immune effect is - lots to learn as always - but the cytokines could also be effecting the brain. Light thinks this is a multi-dimensional process and he really doesn't in what part of the cycle it starts. I talked with him a bit; he's a very very smart guy that is just bursting with ideas.

    Just think if they had 5 million to throw at this how much we could learn. That would EASY in other diseases.
     
  18. August59

    August59 Daughters High School Graduation

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    It's ashamed that they haven't gotten a dime for research and it doesn't look like they will be getting any anytime soon. The NIH really blew smoke up our (nevermind, you know what I mean!!!).
     
  19. August59

    August59 Daughters High School Graduation

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    Cort - There another thread under thread "CFSAC day two" under "Action Alerts! and Advocacy" that pretty much parallels this thread. Would it be hard to combine them or would it make since to?
     
  20. Cloud

    Cloud Guest

    The idea that male ego's offset the gender comparison percentages with this disease always makes me laugh. The disease is so much bigger than ego. I'm sure that may happen with the really mild cases, but if they have real ME/CFS, that will be short lived. My experience is that this is not just a "woman's disease", as they like to call it.
     

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