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Article: The Times They Are a Changing - CAA Nominates Distinguished Researchers To F

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 16, 2010.

  1. taniaaust1

    taniaaust1 Senior Member

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    Yeah.. that is the bonus of having big well known names involved. They arent used to any crap.
  2. currer

    currer Senior Member

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    Mellors suggestion that CFS people are infecting themselves parenterally by using IV unorthodox treatments ignores the two facts that 1. Children get CFS - and they dont search out cranky treatments and 2 CFS is common in England and the treatments he is (justifiably in my opinion) criticising are virtually unknown and in any case usually impossible to access here. So if XMRV is found in children and in England it has nothing to do with unusual treatments.
  3. Recovery Soon

    Recovery Soon Senior Member

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    Thanks for the uplifting article, Cort. Indeed, these are all tremendously positive signs.
  4. Cort

    Cort Phoenix Rising Founder

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    I don't think he's saying that that possibility exists for everyone. He did, after all, highlight how heterogeneous the population is. His saying that it could happen does not suggest that he's saying it happens in everyone.
  5. julius

    julius Watchoo lookin' at?

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    you could even take Dr mellors point further and say that all the treatments we take add to the heterogeneity of the disease. For instance,some of the variety in immune profiles we exhibit could be a result of the immune modulators we take. Someone taking reishi supplements might have a different NK cell function than someone who is not.

    This could (possibly) be part of the difficulty in actually defining the disease and choosing clearly defined cohorts for studies.
  6. illsince1977

    illsince1977 A shadow of my former self

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    Basically, I agree with you, Cort, that Mellors should be given the benefit of the doubt, but I do not think that his parenteral comment was referring to the quoted paper. He was pretty clear that he was referring to PWCs receiving contaminated treatments, especially if you read the other thread discussing his elaboration in a private email to someone quoted in the other thread. We would not be receiving porcine transplants unless we were having a tissue transplant of some kind, which is what the paper was referencing.

    However, even though I'm usually a glass half empty kind of gal, I think his repository suggestion was spot on and he's a clinical HIV retrovirologist with some pretty considerable credentials which makes me hopeful. We still need copious amounts of funding, obviously, especially if ?MRVs turns out not to be the answer.

    Personally I am highly encouraged by the progress of medical science in general lately. Granted, most practicing MDs still have their heads lodged firmly way up their you know whats, but I think that's what we're all here for - to bring the latest research to their attention by keeping one another up to date, helping each other understand the research and supporting one another in demanding better and more scientifically grounded treatments for ourselves.

    I was very encouraged when I listened to the latest TWIV podcast #98 in which Racaniello and Dove were actually saying the Alter/Lo paper was a very good paper which put to rest the contamination issue and it was time to move on to epidemiological studies like looking at immune compromised populations to determine if this virus was causal or only a passenger virus.

    Maybe being sick for 33 years gives me a different perspective, but it seems like an enormous amount of progress on and attention to CFS has happened in the past year. Maybe it's going to turn out that it took some ordinary mothers like Annette Whittemore to get the ball rolling. :victory:, but she couldn't have gotten there without the science. I only wish attention had been turned to it years ago when deFreitas discovered a retrovirus. Apparently human nature requires a holocaust before victims say "Never again." So maybe that means that it took the miracle of the internet (otherwise how could all of us homebound/bedbound sufferers connect) and the deFreitas debacle to bring us together and get us to the point where we make sure it's not going to happen to us this time. I don’t know! This is undoubtedly too much philosophizing for this topic. Sorry I got so carried away.

    Just in case anyone's thinking "Oh, she can afford to be sanguine about it because it's not affecting her as much as it is me and the wait doesn't matter to her." I beg to differ. I am bedridden currently and must rely upon someone else to do everything for me except personal hygiene and eating, both of which are still challenging for my energy level. Not only was my family destroyed by this illness, but I was a pretty terrible mother to my children and I lost my career to it. I am lucky that I now have someone to care for me who cares about me, yes, very lucky!!! But it is not easy to have gone through all those years of illness and run through so many treatments that "should" help, only to relapse yet again into being bedridden and to be getting older all the while.

    Fewer options left automatically translates into discouragement. On the other hand Thomas Edison experimented with thousands of filaments before he hit on the right one for the incandescent light bulb. Someone asked Edison when he was at around 900, "Aren't you discouraged?" Edison replied, "Not at all. Now I know 900 filaments that will not work, so I'm just that much closer to the answer." Or so the story goes!

    Let's get "the man from Pittsburgh," Dr. John Mellors (yes, I looked it up and he is head of the division of Infectious disease at the University of Pittsburgh) on our side. Wouldn't that be great? If Racaniello and Dove can change their mind because of the science, surely this man will be pushing for proper medical treatment for us as well!

    :In bed: :Sign Peace:
  7. jspotila

    jspotila Senior Member

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    Anyone can nominate someone to the CFSAC, but unfortunately the deadline for this round of vacancies was September 15th.
  8. xrayspex

    xrayspex Senior Member

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    Cort, you make some good points, it definitely could be worse! and its good it is scientists and not psychiatrists. I do want to be positive and look for the best, but I also do not want to be niave and advocate where we can and should. I want to like the CAA as well, but one thing I am curious about that is stuck in my craw today re Susan Vernons nomination, is, was it ever explored as to why she supported Reeves 2005 research paper that used non-cfs people, like depressed people instead, why did she sign off on that and then become involved in CAA? Was that cleared up? I am newer to the politics and still learning the history of it with CFS.
  9. citybug

    citybug Senior Member

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    I looked at the nominations process earlier. You needed to fill out a lot of personal information for a nominee that we as patients don't have.

    I think we're at a crucial point for funding. WPI is ready to do studies on immune systems and treatments and the conference conclusion was wait, or reapply to NIH that has rejected your proposals, and has no money allocated. CFSAC has to push for us. It is the scientists and doctors who know the ME/CFS patient population that push for us.

    I'm all for Dr. Mellors doing studies, but I am concerned about him representing ME/CFS patients on CFSAC. He doesn't seem to know the patient population, and I think he is refering to his own skepticism, even after sitting through all the lectures by Ruscetti et al. When I watched the Q and A a second time I noticed, as well as thinking contamination of supplements is more likely than the retrovirus found, wanting to split up XMRV research in CFS and prostate cancer (studies are separate, but more can be learned at this point by having the conferences together-like the knowledge Dr. Singh brings to the table), he didn't recognize the many reasons for the 0% findings by the CDC and other small groups who used general fatigue cohorts, different primers, unactivated blood, old samples, PCR only, heparin tubes, that were discussed at the conference.

    0% prevalence in the bed bound- that would mean the Swedish study which we can't see yet, in a very different region? Or he doesn't get the psychologist cohorts?
    His questions may represent those of other scientists at large, but as Coffin or someone commented he is already on many powerful committees.

    For our representatives we should ask, are they for immediate research funds for XMRV and ME/CFS? Will they support funds for WPI and Centers for Excellence for treatment and immune studies now? Are they for the advanced research team with the patients, the facilities, the testing, the immune panels, the virochip, going forward (while others learn to test)?

    His concern right now seems to be catching up the rest of the scientists, which is the stand the NIH has taken by not funding WPI. It will take some time for them all to be on the same page. That isn't the need of the patients like me who have vertigo and chest pain and wonder if we can hug our relatives and friends.

    Yes, I think Mellors and others are against funding for Centers for Excellence until there is standardized testing. The CDC and other groups want to have their own tests, have not tried WPI's methods, and are holding back the more advanced research.

    I don't know about Dodd specifically, but some of the blood bank people seem to taken this very seriously and learned a lot.

    That zone of chaos quote was taken out of context. A poor article for a science mag with all the data presented at the conference. Coffin was talking about being in the first year of research like HIV.

    http://www.facebook.com/notes/xmrv-...t-international-xmrv-workshop-qa/438284026796

    Dr. Coffin. You have to be reminded that it’s been less than a year since people, most of us have been seriously thinking about dealing with these issues. It’s really quite a short time. It takes a long time, to set up, say to set up the blood working group panel, it’s been probably six months of talking and deciding and so on before we began to get samples really in… so it’s only couple of months that we’ve been working on that. So I’m quite optimistic that say within the next year there will be a synthesis of this to the point where not necessarily everyone’s using exactly the same assay – you don’t do that with HIV – you have different assays designed for different purposes. And I think we’ll head toward that fairly quickly now I would predict. But right now we’re still in a zone of chaos where since we don’t have agreement on almost anything in this we have to work toward that right now. But I’m optimistic we’ll get there soon.
  10. minajenkins

    minajenkins

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    It was mentioned above that patients do not have the information to make nominations. It takes a little work, but since the nominator has to contact the nominee in the first place to see if he or she is willing to serve, the information can be obtained. I have a friend here in Atlanta, unconnected to any group and very ill, who nominated someone she felt strongly about a few years ago. He wasn't chosen, but as we've said before, most nominees are not chosen, including some of the strongest candidates. I'm just mentioning this for next time, since openings on the committee occur yearly. You don't have to agree with anyone else's nominations, just nominate someone yourself. Someone should certainly nominate Cort again. It will be interesting to see if any of the nominees who have been discussed will actually be chosen.

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