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REMINDER Web presentation today - Dr. Leonard Jason

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CJB, Apr 14, 2010.

  1. fds66

    fds66 Senior Member

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    Well I was convinced that the presentation was today (Thursday) and only found out by accident yesterday in chat that I'd even got the day wrong lol. So you can add that to the list - not only wrong time but wrong day. As it happens I couldn't watch it yesterday so I'll be catching up sometime on the recording.
  2. starryeyes

    starryeyes Senior Member

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    I have too many proofs all over this forum. [*Attention brain* I already have disability. I can stop proving how much cognitive dysfunction I have now].

    I hope that works. :rolleyes:

    I asked the CAA if they would please put Leornard Jason's diagnostic information in their CME (Continuing Medical Education) materials that doctors use to learn about diagnosing and treating ME/CFS.

    They didn't answer me. I have major doubts that this will ever happen which means that our doctors will continue to belittle us and treat us as malingering, exaggerating hypochondriacs not to mention that the doctors will continue to misdiagnose millions of people as having ME/CFS when they don't.

    I was really hoping that Kim McCleary was actually listening to what Leornard Jason was saying yesterday since she was right there and that she would realize what we've been saying about the CME materials and about putting the Canadian Criteria on their website and taking down Fukuda. Sigh.

    An interesting thing I noticed on the CAA's latest CME is that the majority of doctors that took it stated that they have great difficulty diagnosing patients with ME/CFS. This was towards the end of the CME materials which gave me the impression that the CME materials were of no help to them in this regard. It's really no wonder since the CAA did not explain what ME/CFS really is and went on about CBT and GET as treatments for us.
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I honestly think that in docs on mainstreet in US, they are much more likely to misdiagnose someone as having depression when they actually have CFS. Now, maybe Reeves' broad definition became a problem in research and in statistics.

    But I had a doctor tell a friend of mine that fibromyalgia is actually depression of the body. And another doctor told me he didn't believe CFS or FM were organic illnesses. He told me I had a "different kind of depression" and prescribed anti-depressants.

    Without the Internet, I would have been completely lost, led astray.

    How many others are having this problem and just have not found the right doctor yet, the one that knows and can accurately distinguish between depression and CFS.

    I love that when I told my current doctor of this past experience, she looked shocked. "You're not depressed." I told her, "I know." She just shook her head. She hears me talk of the things I am doing, when I can and the things I wish I could do.


    This thread did make me laugh. It is an example of our cognitive problems. Memory, crossed wires and unable to learn anything that takes steps of action.

    On the note on the bad science, you will only find something if you are looking for it. You look for a virus, you will find it. You look for psychological, you will find it. This is also in politics. I see what I want to see because the only information I take in are those I agree with, meaning they only confirm my previous beliefs. Nothing new is learned because I previously filtered out all information to the contrary, because that is not what I want to see. So I find the evidence to support my beliefs. This happens with detectives in a criminal case. They form an opinion early, and only look for and collect evidence that supports their belief. Unless contrary evidence slaps them on the head, they don't see it. How many innocent have ended up in prison?

    This is very human.

    And I believe all of this goes back to Incline Village (at least for US CDC and the results from that). Absent a clear cause, the "enlightened", the ones who came out and did the investigation, drew conclusions and an institutional paradigm of CDC and NIH was set. Only evidence that slaps them in the face would change that. And they set the tone for medical education and therefore doctors and government policy.

    Remember, according to Osler's Web, before they even came out to Incline Village, they were prejudiced by the comments of the local health department guy.

    As for UK and the world, although UK had ME, they welcomed CFS as a way to not be ignorant and impotent when patients came begging for answers. Men do not like to say "I don't know," especially doctors, especially when it is women coming and asking them. So, the US CFS trend gave them a way to lift their heads, not to mention the psycho folks becoming "experts" and gaining lots of patients.

    Tina
  4. HowToEscape?

    HowToEscape? Senior Member

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    I think it's foolish to look to the CAA as the official contact point for anything. Remember the 'what is CFS' campaign which presented it as healthy-looking people hanging around looking vaguely tired for no identifiable reason? Looked like a marketing campaign for vitamin water.
  5. starryeyes

    starryeyes Senior Member

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    HowToEscape: You do realize that the CAA is responsible for educating or rather miseducating hundreds and possibly thousands of doctors, right? Very possibly the doctors you see. I can see not having a problem with that as long as you believe that CBT and GET are effective treatments for us.

    Kim McCleary has also authored CME (Continuing Medical Educational) materials at the CDC for our doctors as well and they contain the same "treatment" advice.

    The CAA has a lot of power over our lives.
  6. jspotila

    jspotila Senior Member

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    Look at the Full Picture

    The Faces of CFS campaign featured Rich Carson (ProHealth), Dr. Donnica Moore's son, Dr. Bell and Dr. Komaroff, among others. The campaign was developed with expert marketing firms' involvement, and some of the only focus group research I am aware of on CFS.

    Regarding tee's suggestion that Dr. Jason's information be incorporated into the Medscape CME - it has been less than 24 hours since the end of the webinar. I am sorry Ms. McCleary has not responded to your inquiry, but I don't think it is fair to draw nasty conclusions from that at this point.

    The Association invited Dr. Jason to give yesterday's presentation. The Association links to the Canadian definition from the Spark site, and more importantly (in my opinion), the Canadian definition is part of the criteria for the SolveCFS BioBank. The Association's letter to the DSM-V Task Force cites the Canadian definition as well, stating:
  7. Dolphin

    Dolphin Senior Member

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    You and/or others might be interested in this thread:
    http://www.forums.aboutmecfs.org/sh...ts-think-quot-(cognitive-errors-they-make-etc)
  8. starryeyes

    starryeyes Senior Member

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    Well, nobody at the CAA including Kim has responded to our numerous requests that they change the CME so that patients are no longer being harmed by it so I think it's pretty safe to say that this won't be addressed either.

    Anyway, what I meant was that I had written the question to the CAA like we're told to do during the Webinar and it wasn't addressed.
  9. BEG

    BEG Senior Member

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    It's possible my brain was checking out, but I thought I heard Leonard Jason say that his (and his colleagues) new definition of ME/CFS will apply only to the rapid onset patient. I'm wondering where that leaves a good number of us?
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yeah,

    My story.

    Virus on and off for months.

    Then felt good. Over years, CFS symptoms grew, at first with menstrual cycle, but with a few years, other times and every day.

    Then a plummet with fibromyalgia symptoms coming, happened in one night.

    So, which am I?
    ring that time.
    Am I excluded then because my symptoms were gradual after the virus? I had 29 days in each month during first year. But then it went to less and less, etc.

    Tina
  11. gracenote

    gracenote All shall be well . . .

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    This is what concerns me about the BioBank.

    I think it is going to exclude a lot of ME/CFS patients and thus skew the results of all studies coming out of the BioBank. I submitted this question to the CFIDS Assoc. before the webinar with Dr. Jason hoping it would be addressed. It was not.

    That is just my opinion and many others don't agree with me. It concerns me even more if a case definition also has similar wording.
  12. Sing

    Sing Senior Member

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    I agree with you. Dr. Byron Hyde, one of the most thorough diagnosticians for ME, finds both gradual and sudden onset as characteristic for the illness.

    Sing
  13. BEG

    BEG Senior Member

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    Sing, Gracenote, and Usedtobeperkytina,

    Exactly what I was saying. These are specialists starting from scratch developing a "new" definition of CFS. On the one hand, since the gov't. has done such a miserable job, we can be uplifted by this news. But on the other hand, we might add a "what about us?" I am discourage at being left out of the biobank and becoming very worried that only the sudden onset patients will be selected for XMRV lab tests in the fuutre. Maybe because the researchers believe only those patients will exhibit XMRV?
  14. oerganix

    oerganix Senior Member

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    I agree with you, gracenote. It seems to me that a person with a stronger immune system might have gradual onset while a person with a weaker immune system might have sudden onset. BUT, they both end up in the same place, and for basically the same reasons.

    I had sudden onset, in that I know exactly when I got the "bug" that felled me and from which I never completely recovered, but I soldiered on for over 6 years before I could no longer function at all.

    I had the impression, hope it's not just wishful thinking, that the BioBank restriction to sudden onset is temporary and will be changed later. It makes sense to conduct research on a more stringently described cohort, at first, and then include a broader definition later.
  15. BEG

    BEG Senior Member

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    Oerganix, I can tell you the year, week, and day I first exhibited CFS symptoms. However, these symptoms didn't send me to bed, and I continued to"soldier on" at work for 16 months. I was excluded from the biobank.

    It is my opinion that the viral sudden onset group more likely has XMRV or its antibodies in their blood which makes it easier to find. Gradual onset, on the other hand, perhaps is caused by (per Dr. Bell) toxic exposure, head injury, emotional or physical stress. If I were the researcher loooking for a virus
    (retro or not), I would look first at the patient group which exhibited flu-like symptoms at the onset, from which they never recovered.

    What is prompting this viewpoint is the fact that Leonard Jason, in his "new" case definition says ME/CFS must have a sudden, acute onset. In other words, the same criteria as the BioBank.
  16. jspotila

    jspotila Senior Member

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    The current BioBank criteria are required for the current studies. The Association expects these criteria to change, and hopes to broaden the onset criteria to include gradual onset cases. From the SolveCFS BioBank FAQ:

  17. gracenote

    gracenote All shall be well . . .

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    I didn't have sudden onset, although I have a flu-like illness. I have tested positive for XMRV.

    For sudden onset, is it possible that XMRV was already present and then a viral infection set it all in motion? If XMRV can be passed on vertically, then a child could have it for years before something else triggers what we think of as ME/CFS.

    I think this particular restriction of which patients can donate blood to the BioBank where researchers will get their samples for many different studies is ultimately going to give us less reliable data.

    Unless someone can show me some good data on how the symptoms of gradual and sudden onset are so very different, I will continue to be baffled by this choice and think it nonsensical, especially now that researchers are adding an XMRV component to their studies.
  18. jspotila

    jspotila Senior Member

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    Then under that particular criterion, you are eligible for the BioBank. Obviously, there are other criteria as well.

    As the Association explains in the BioBank FAQs, "Our initial group of collaborators is interested in potential infectious triggers for CFS and to facilitate this research, we have drawn a tight circle around CFS patients who might help provide more clues to these particular research questions. We anticipate being able to expand the onset criteria as BioBank collaborations and resources permit."

    I am not a researcher, so I can't say for certain whether the BioBank collaborators or Gracenote are correct about the usefulness of data from this initial group of patients. Again, the criteria will likely be expanded as more collaborations and resources permit.
  19. gracenote

    gracenote All shall be well . . .

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    Thank you jspotila. I don't mean to belabor this point, though obviously I am. The criteria says "CFS initial presentation" of flu-like illness, and that appears to disqualify me and others.

    As I'm thinking about this now, I'm realizing that my brain is no longer able to follow even my own logic, so I will move on (for now).

    Will there be a transcript of Dr. Jason's talk? (As I can't do transcription, I'm not volunteering, and I wouldn't presume that anyone else should, either, but a transcript would be nice.)
  20. jspotila

    jspotila Senior Member

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    Neither the Canadian definition nor Dr. Jason's operationalization of it requires sudden, acute onset. The BioBank does, at present, for the reasons I've explained. Again, when resources and collaborations permit, the Association intends to expand the BioBank criteria to include gradual onset (among other things).

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