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  1. Otis

    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    I've got to disagree with this point of view. If the process that led up to the IOM contract lacked integrity then I have no confidence that the contract itself it will proceed with integrity. But you're the kind of optimist with whom I like to play poker. ;) This has been discussed at length...
  2. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    I'm not sure there's a singular answer answer to that question. If I want the latest news I go to twitter. #mecfs and #neurome are probably the best hashtags. If you want a head start with who you might want to follow I'm @OtisQuila and see who I follow. I tend for follow people who are posting...
  3. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    This is just a discussion in a little corner of the 'net and you're going to chastise someone for questioning DHHS's motives? Funny, I saw references to actions in that post, not motives. What of the motives of CDC starting in the 80s? Are those out of bounds too? The fact of the matter is...
  4. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    Good points. The second one is interesting. I too think the stand that the initial 35 took made a double statement. "You can't ignore us one way or the other." But I think that makes their push to cancel the contract all the stronger. I'm not sure how much flexibility will be shown be any...
  5. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    I agree with Parvo on this one but for me it's a secondary issue relative to the moves of recent days. Although if they eventually have a say in the definition we'll definitely see that issue arise. They've used words like this in an attempt to not alienate the signatories of the letter while...
  6. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    This is a variation on the theme but it's evolved. This organization hasn't represented a real threat to the establishment in a long, long time. They are the establishment. They sold their soul a long time ago. They put on the face of a research org and suck in donations. There's a book in this...
  7. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    This thing played out pretty fast. I'm pretty surprised and impressed at how many they got on board so quickly.
  8. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    I'm not going to delve into the clinical vs. research part of this but I do find the question of "what's good enough?" an interesting question. I would bet a disability check that nobody that signed the letter believes the CCC is perfect. I'm a believer in the 80% solution. This is coming from...
  9. Otis

    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    However, the CAA has stopped short of rejecting the IOM contract and endorsing the CCC. They had a huge opportunity to stand beside the researchers and clinicians who said "No. We the experts already solved this problem. Spend the money on research instead of on unqualified people groping around...
  10. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Thanks for the insight in the differences between the two tests but I've got one clarification I'd like to make. There seems to be persistent confusion that because the test is one day that is an AT test and not a CPET test. This is incorrect. The one day test will be a CPET test, not an AT...
  11. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Yep, so far he's only looked in whole blood and CSF and mostly (exclusively?) using his high throughput sequencing. Since he found HHV-6 in a few instances and nothing else we consider common in M.E it makes me wonder about his testing. He hasn't done any serology (antibody) testing yet which is...
  12. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Thanks for the insight. Was the testing itself excruciating, or was it the PEM, or both? I've been confounded by Klimas/Sol patients here making it sound like an AT bicycle test was wasn't very taxing and didn't seem come with much of a post-test price. "Excruciating" is much more what I...
  13. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    We're thinking alike, I believe. That should really worry you. ;) I absolutely think we should be doing exercise testing and I strongly believe it should be two days. Unger said: I don't find this statement show insight into the most severely affected. The most severely affected can't...
  14. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    That's good anecdotal information about AT. I agree that insurance and disability offices won't accept this data. I want folks that read this understand that CPET is the test, one day or two, that we're talking about in the context of this study and not the very much more narrowly used AT...
  15. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Rather than update a 45 min old post, I'll write one more to clarify the retroviral sequences being found only in Dr. Montoya's patients. I've listened to a recording, specifically the part speaking about retroviruses, and Dr. Lipkin clearly says that they were found in Dr. Montoya's samples...
  16. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    I just listened to the recording. He was using the High Throughput Sequencing technique they uses to "find over 500 viruses" and that they found "retroviral sequences". They were found only in Dr. Montoya's patient samples which may be why he thinks this won't be a "pan out" CFS but it needs to...
  17. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    I agree this is a summary of Lipkin's talk on the CDC call. I was 99% sure it was Cort based on the writing style and I think his response to the first comment confirms it.
  18. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    {Speculation alert} I think if he meant he found an endogenous retrovirus (as described by Bob above) he would have pointed that out to try and help quell the storm over the finding especially since no endogenous retrovirus has been shown to cause disease, at least not yet. I can no longer...
  19. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Thanks for the repost of the blog link Sasha. On the blog comments 'Maxine' points out that she would probably have PEM/PENE just from the trip preparation and travel. Therefore the first day might not be a true baseline. For a one day test the results might reflect a better PEM picture - albeit...
  20. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Well said Tom! The issue should be the brought every chance we get. We're so used to no money as a reality that we don't talk about it enough.
  21. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    No, the underlying concern is that I'm not satisfied that measuring AT is a sufficient study of effects of exercise in M.E. Dr. Klimas and Ms. Sol are trying to use AT in an attempt to come up with an exercise protocol using the measured AT. That's a decidedly different goal and not what we're...
  22. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    I wish Ms. Sol's patients could remember more too. I've not heard of an exercise challenge that wasn't a challenge.
  23. Otis

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Her stated logic is horribly flawed. Most definitions of "severely affected" patients are home-bound and bed-bound. I fall very solidly into that demographic and feel reasonably qualified to speak on the subject. I couldn't possibly travel for such a test and she's worried about an additional...
  24. Otis

    Talking with CFSAC - Views from the other side of the table

    Hmm. Despite the system telling me I had been logged out apparently it, albeit belatedly, made my original post. I did check and it wasn't there when I started over. So sorry for the mostly redundancy of the last post.
  25. Otis

    Talking with CFSAC - Views from the other side of the table

    I just lost a huge post and my arm pain is over the top today so a short summary will have to do. Heaps - I agree. This is validated and should be used, just maybe not exclusively. I agree that an exercise challenge is useful but isn't feasible for the sickest of the sick. I'm almost bed...
  26. Otis

    Talking with CFSAC - Views from the other side of the table

    Looks like we mostly disagree Sasha. Dr. Marshall gave a politician's set of answers that are typical for the chair of this committee. I like the man but he isn't a leader or an organizer. I think the biggest required change is that the committee needs to lead and show some nerve to call out...
  27. Otis

    Immune Cell Abnormalities -- Any thoughts

    I just got the exact same thing in a set of labs I had done. I'm going to ask my doc about this when we speak next. If I learn anything I'll let you know. My NK cell function is essentially zilch consistently.
  28. Otis

    Leg pain which becomes back and arm pain too!

    This sounds pretty familiar. I've had a progression from legs to back to arms myself. Outside of high powered medications which only take the edge off for me I've got one alternative. What has worked for me is lidocaine. You might try lidoderm patches. If they work, you might try a compound with...
  29. Otis

    Question about anerobic threshold and m.e

    I agree with heaps but it's only my experience and not based on any scientific info. After I got sick in high school, I recovered to about 80% but I didn't know I hadn't gotten all the way well. I tried to play one more season of football and couldn't get any level of aerobic fitness...
  30. Otis

    CFSAC - Do only 200 people in the world care about CFS?

    These are subtleties that I don't think a bureaucrat will understand so they shouldn't try.