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ME/CFS and the Magic of the Canine Factor
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Watch US CFSAC meeting NOW!

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

  1. urbantravels

    urbantravels disjecta membra

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    I just switched computers and can't log in on my other computer - the link to today's session has vanished on the CFSAC page. On the computer I was formerly using (the laptop in bed/roll-over-and-open-one-eye computer) there is a cheerful message saying the session is over. I guess something glitched during the lunch break.
  2. urbantravels

    urbantravels disjecta membra

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    Link's back now. I'm watching again.
  3. dannybex

    dannybex Senior Member

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    Klimas...

    I agree. Among the 'name' doctors, she's also the one with the best track record of recovering patients and as she calls them, 'complete resolutions'.

    Plus, she doesn't charge an arm and a leg.
  4. Lynn

    Lynn Senior Member

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    I just wish in the wrap up, he would say Chronic Fatigue Syndrome!

    Lynn
  5. Hope123

    Hope123 Senior Member

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    Houghton's wrap-up is a bit too editorial when he talks about LeGrice's presentation -- saying he changed his mind toward XMRV (negatively) in the role of CFS. I realize he was doing this off the cuff since he probably didn't have access to the talks beforehand but it still bothers me, primarily where he talks about knowing the treatment background of WPI patients. He could have stopped there and I would have been fine but noooooooooooooooooo..............he has to go into some phrasing implying that patients could have gotten infected through treatment.

    Why don't they just make it explicit ---- what treatments in particular do they think are causing XMRV to show up? Heparin? Kutapressin? etc. Although it's possible that WPI patients have tried these treatments, I don't think it's good to imply that we're a bunch of crazies trying treatments and potentially harming ourselves as a results. If they want treatment background on WPI patients, they should ask the same of negative studies as comparison.

    P-H-D Shme-S-D, yes, I respect their training but I also recognize their limitations. Some PhDs I bet have had very little interaction with actual patients.
  6. Lynn

    Lynn Senior Member

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    I didn't see Le Grice's presentation, but based on the wrap up session, the contamination question in XMRV research sounds like a real possibility in the minds of some researchers.

    I guess I thought contamination was off the table. Can anyone speak to that?

    Lynn
  7. Stone

    Stone Senior Member

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    I found Legrice's remarks irritating as well. I know some feel it's not a big deal, but it really gets under my skin when a scientist calls this "Chronic Fatigue" instead of "Chronic Fatigue Syndrome". Chronic fatigue is a symptom. Chronic fatigue syndrome is a discreet disease entity. Say what you mean. Speak like a scientist if you're going to call yourself one. It's like calling Diabetes "chronic thirst". The minimizing name is bad enough, but to make it even more benign sounding is offensive to me personally.
  8. Dolphin

    Dolphin Senior Member

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    I just caught the last 20 minutes of it. One thing that makes me think it isn't contamination by treatments is that so many of the British patients have showed up positive (70%+) in the WPI Ashford 50 study. Most of them I would imagine haven't had intravenous or intramuscular treatments. [And if they did, they would likely have got them from a variety of sources which means there's a lot of contamination by treatments around the world].
  9. Dolphin

    Dolphin Senior Member

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    :thumbsup: Brilliant Parvofighter. :thumbsup:
  10. George

    George waitin' fer rabbits

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    I found the entire thing to full of mixed messages and rather depressing. I did get the feeling that LeGrice's main pitch was to get the CFS community off of the backs of the government scientist. Obviously all the letters and e-mails are sparking interest that they just don't want. His comment about "just needing time to do the work". Which of course means we need to keep the pressure on! (grins) an e-mail a day.

    One of the mixed messages was that Dr. Alter is, what, confused, a liar, not adhering to the party line???? I mean WTF folks, Dr. Alter states plainly he thinks his work confirms Lombardi et al but now according to LeGrice it doesn't??? I think Dr. Alter knows what he means.

    And what the heck with all the references to contamination but on the other hand it's a handling/processing problem based on time and temperature. So which is it???

    Dr. Lerner's a lovely guy and I really like him but he's not "curing" or even showing empirically (diagnostically) that his patients are improving. I'd be glad to try an antiviral medication just to see some improvement but despite his nearly 40 years of work antivirals are used only but a very few CFS clinicians. Where's the help for the other 1 to 4 million of us????

    And the CDC asking stupid questions about men vs. women vs. children????? I wanted to take my claws and make grooves in Mikes eyeballs. (sorry for the violent imagery) The CDC needs to be doing confirmation studies on Dr. Klimas work, Dr. Lerner's work, Dr. Light's work and changing their web site to disseminate the information to the general practitioners.

    I don't know, it's probably just cause I feels so crappy right now (no boing here, just splat) but I felt that at the current rate of progress it will be another 10 years before we even have a (some) bio-markers that might be approved by the powers that be and used by GP's. . . maybe.

    Anyway it just seemed like a lot of effort and nothing useful. (sigh)
  11. VillageLife

    VillageLife Senior Member

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    I agree with you, what exactly does Dr Alter think about what everyones saying.

    and your right one min there like contamination.....then there like actually its the wrong brand of tubes!!?
  12. Cloud

    Cloud Guest

    I just can't believe this xmrv contamination via CFS Tx is still coming up when it's just such a ludicrous idea. First off, what freakin Tx's? There is no Tx for CFS common enough to even come close to matching the xmrv+ numbers. But, if we were to tally the percentages of any and all meds/tx taken pre-CFS, vaccines would far and away top the list as most common across the board.

    Re: Lab contamination: Seems to me the Serology tests will put that idea to death once and for all.
  13. glenp

    glenp "and this too shall pass"

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    I agree with George

    If the next 2 days do not drastically change, we will be moving along with the turtles again as smaller tutles come and join in-- here we go again for another ten years.

    glen
  14. August59

    August59 Daughters High School Graduation

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    Who was the gun very close to the end that mentioned that there were a few "new drugs" that are in clinical trials that would really be good anti-virals for XMRV? I think he referenced their very long half-life (maybe) which would play into XMRV's slow replication.
  15. hensue

    hensue Senior Member

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    could someone just shoot me?
  16. Dorothy

    Dorothy

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    Thank you for the transcript of this morning's session, Parvofighter! I slept until noon Eastern time and missed the entire morning. I'm looking forward to reading about the earlier session when my brain wakes up around midnight.


    I agree with George's assessment - the part that I saw seemed to me to be a tad depressing. So many potential biomarkers, so little funding, etc, and LeGrice was irritating at times. Thank heavens there were people like Nancy Klimas and Leonard Jason (and others) there to keep things from getting positively dismal. I especially was annoyed by the XMRV contamination issue coming up again.....I thought the WPI had shown pretty clearly that contamination was not an issue in their study. Now it is being implied that perhaps patients themselves might be contaminated? Say what? Kutapressin is a porcine extract so wouldn't patients have, at worst, pig DNA contamination? Even if patients have somehow picked up mouse DNA, I thought WPI is able to differentiate between MLV's and XMRV. And I would think that Lo/Alter can do the same with MLVs and PMRVs.


    My thought when Mike from CDC asked his question about male/female/children characteristics - if CDC had spent the $13 million they "misappropriated" (stole) in the 1990's on real CFS research, maybe they would already know the answer. I did have to laugh when it was pointed out that men just don't want to go to doctors and have to be dragged there by their wives. That sounds just like my husband, who fortunately is pretty healthy. I suspect there are a lot more men with CFS than we think.


    Time to go send more emails to Collins and Fauci!
  17. George

    George waitin' fer rabbits

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    He*& NO, We need you for clinical trials later when these rubes get their heads out of their opinon makers. (grins)

    I really think the whole "don't look at the man behind the curtain" song and dance of LeGrice and What's his face was just trying to get the CFS community to stop pushing so hard on the science community. But this ain't OZ and I ain't Dorthy (but since we have a Dorthy now, Grins). I figure the last e-letter I sent to CDC regarding getting their website to reflect the current state of diagnosis of the practicing clinicians fell on deaf ears and I plan to resubmitt it and to send copies to NIH and whoever else including the newspapers.

    I figure if they don't want us to make a stink then it's the best time to make a stink! And I'm a little stinker!
  18. urbantravels

    urbantravels disjecta membra

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    I'm glad I was still asleep and didn't hear Dr. LeGrice live. SO BORED of the admonishments about possible contamination. Just get back to me when you've gotten it all straightened out, mkay?

    It's true, there was a distressing lack of new XMRV news in the presentations; but even leaving XMRV out of the picture, listening to all this talk about biomarkers, cytokines, immune modulators, etc. just reminds me how far we are from having even the pre-XMRV, non-controversial parts of CFS science make the least bit of difference for the clinical treatment of most of us. Even forgetting that XMRV was ever brought up, we should all be getting better, more knowledgeable treatment NOW, not waiting for the XMRV question to be settled before we can have real hope of anything changing or our doctors getting a clue.

    Something confused me a bit about Dr. Light's presentation and discussion of "fatigue" as a "sensory phenomenon" - yes, I know he's not claiming our fatigue and pain aren't "real" by putting it in those terms...but surely our "perception" of "feelings" of fatigue aren't the whole story? What about the fact that we go into anaerobic metabolism a whole lot quicker on minimal exertion than anybody else? What about exercise capabilities on re-test the second day? Aren't the objective measures of ability to exert muscular effort really different on the second day re-test?
  19. Dolphin

    Dolphin Senior Member

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    I didn't see the talk but I have had problems with what the Lights have said before on this. They seem convinced that nothing abnormal happens in the muscle but our body thinks there is for some reason. But abnormalities of various kinds have been found.

    For example (there were other studies before this):

    http://www.ncbi.nlm.nih.gov/pubmed/20433583

    I'm out of my depth when biological discussions get too technical but think that sort of finding might explain receptors abnormalities in gene expression for metabolite detecting "acid sensing ion channel (ASIC3)", for example.
  20. George

    George waitin' fer rabbits

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    Huh (head scratch) cause they mentioned that (ASIC3) in the talk. My take away with the Dr.(s) Light is that the neurons that sense and send signals are being coated with proteins especially during stress (exercise) and that while ME/CFS patients can make it through a first round or stress (exercise or physical activity) what happens in our bodies is a very "abnormal" biological process that includes major cytokine storms, problems with inflammation through out the body, difficulty with neuron processing and sever problems with any type of stress (exercise or physical activity) for the next 24 to 48 hours after the original stressor (exercise or physical activity). They showed that Pro Inflammatory cytokines don't return to normal levels in ME/CFS patients even well after the normals have returned to baseline levels.

    I don't know Dolphin I thought it was a pretty good set of bio-markers. The two problems with getting it to the clinician are setting up the stress test which Dr. Light stated was "harmful" the patient even if it did provide evidence of PEM and abnormalities in the ME/CFS group compared to any other group studied. I think that's a good thing or at least a plus in our bio based column.

    I have read studies that state that the "perceived pain" is greater than the actual pain and I humbly have to agree with this. Prior to becoming ill a Kidney stone was a mere 7 on my pain o'meter. These day's everything feels like a 9. Which is why I tend to ignore anything that doesn't cause profuse bleeding or instant death. (grins)

    I love your sig. I think we should all write the CDC and demand their website change to the CCC!

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