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Cfsac day two

Discussion in 'Action Alerts and Advocacy' started by George, Oct 13, 2010.

  1. leaves

    leaves Senior Member

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    extreme risk aversion maybe?
  2. George

    George waitin' fer rabbits

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    Extreme distraction tactics. But why?

    And would people quit treating us like two year olds ! It annoys me. Speak plainly and do what you say and say what you mean. The razzle dazzle is just plain giving me a headache.
  3. Cort

    Cort Phoenix Rising Founder

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    I think they were just trying to cover some of the many bases of the federal response to CFS.

    Some of the CFSAC members were also not happy with some of the not particularly pertinent presentations. They had finally gotten away allowing people to give generic presentations but some of them were back and they, quite frankly, had some of the wrong presenters up there. I thought Snell and Dr. Lange were excellent, I missed the Social Security guy, the ERISA presentation was a misfire, and the Health plan one was OK but frustrating since there was no remedy for the Blue Cross problem.

    Liked the patient presentations alot!

    Tomorrow should be more interesting as we finally get to hear from the Trans NIH working group - they hold the purse strings for CFS at the NIH
  4. citybug

    citybug Senior Member

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    Is anyone mentioning WPI in the testimonies? My computer had problems even when the video was on. I think we have to back up WPI especially since they weren't invited speakers and they are working for us. Carol's testimony second to last was both militant and heart breaking and K Baker who got cut off was great. What did he say about contamination? I think all the attendees can't help but be affected by these testimonies and keep fighting for us or have their eyes opened. But we have to talk about XMRV since they are in a bubble.
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, I don't remember whom, but someone mentioned that WPI has not gotten any additional funding since publication of their study. I think it was a patient who said it. And I don't have firsthand knowledge of that. But I can tell you WPI was mentioned.

    Also, Marly Silverman, reading another person's testimony, mentioned the virus discovery gives an unprecedented opportunity, just as the retrovirus discovery fueled research for HIV. She mentioned WPI as the ones who first published it.

    Tina
  6. bullybeef

    bullybeef Senior Member

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    I was furious after the first day debacle, and I have chose not to listen again.

    The UK is rife with dodgy charities, that maybe become redundant should XMRV be proven the cause/effect of ME/CFS.

    But I have also had an epiphany that if they do try to bury the XMRV/ME link, there’s nothing we can do about it. And we have to be prepared for this possibility. We have absolutely now power to change the outcome. All we have to hope is that the WPI and Co can prove there are many people infected with the virus.

    My guess, which I predicted last year was that the detractors can legitimately go to the WPI and ask them to prove that they people with ME whom test XMRV+ actually have ME/CFS in the fist place.

    The loophole that is there’s no diagnostic test for ME/CFS means the detractors can use this ambiguity to bury the link. XMRV associated disease could be easily redefined, and that anyone whom has tested positive was simply misdiagnosed with ME/CFS.

    I hope to be XMRV negative, so it doesn’t give me any pleasure to suggest this possible scenario.

    I do hope I am proven wrong.

    BB
  7. RivkaRivka

    RivkaRivka Senior Member

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    exactly my thoughts!
  8. anciendaze

    anciendaze Senior Member

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    What we are witnessing are delaying tactics. There is no way in hell they can bury prostate cancer, which causes 10,000 deaths per year in the UK alone. Take the 27% preliminary finding of Ila Singh about XMRV in prostate cancer, and you have 2,700 deaths possibly caused by XMRV each year. And, we haven't even begun to look at all viral variants.

    From prostate cancer, we go to precursor conditions, like chronic non-bacterial prostatitis. This has no known etiology. In females the corresponding condition is called interstitial cystitis, which doesn't mean anyone understands that etiology either. Urologists in research are now grouping all these conditions under a single label. Guess what? These conditions show up at elevated rates in ME/CFS. The connection between infected prostates and neurological disease in the associated nerves is fairly direct.

    The current mess in diagnosis is the result of dumping many different patients in one wastebasket. The naysayers aren't going to challenge diagnostic criteria of others while there is a biomarker in 80% of the group, because they have absolutely no marker to identify their preferred cohorts, only opinions. That is why they are challenging the biomarker itself. They are concentrating on a single test, because they have no answer to others. Their position is going to get worse as more biomarkers with different tests become available. Here is an example which may (or may not) be connected, a possible biomarker for precancerous changes in the prostate. (This also gives a gene change to search for.) There is also a urine test for XMRV (HMRV) on the way. Because urine passes through an infected organ, this may be more sensitive than simple blood tests, and considerably cheaper.

    Serological tests for HMRV are now available, though not approved. These bypass many objections to the PCR tests. You don't get a serological response to laboratory contamination.

    MRS scans showing damage to dorsal root ganglia have now been followed by confirmation at autopsy. No neurologist is likely to say finding T-8 lymphocytes there is normal. Meanwhile, the bodies are piling up in Singh's study of all possible XMRV-affected organs in deaths from all causes.

    I haven't even touched on the statistical link with lymphomas/leukemia, which is worrying enough when confined to PWC, and now shows up in those around them.

    Look at the rise in incidence of prostate cancer and unusual lymphomas after 1985. These are major public health concerns. The disarray in the naysayers camp is over ways to disengage ME/CFS from connection with illnesses they dare not downplay. This is going to become steadily more difficult.

    Delay is possible, but only for a limited time.
  9. George

    George waitin' fer rabbits

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    So what you're suggesting is that government officials are ignoring XMRV/HMRV in ME/CFS or have decided that it's not causal for ME/CFS. What may be going on behind the scene's is that ME/CFS will get busted up in to smaller groups of cancer patients, and other already defined illnesses that will be determined to be caused by XMRV/HMRV. Meaning there is no ME/CFS only XMRV/HMRV illness of which we will each get sub-grouped into and treated for. So all this is just a delay tactic until they can figure out how to spin that out and make it stick. hmmm, it actually sounds quite reasonable. If I'm reading you right. If not I apologized my brain just plain hurts today.

    The good thing about such a scenario is it would make treatment and diagnosis much easier for doctors and patients. The bad thing would be that you would be talking about a 7 to 10 year spread before things could be put into place for treatment. (sigh)
  10. anciendaze

    anciendaze Senior Member

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    Whoa! (Woe?)
    No, I am not saying that will happen. I am saying there are aspects they cannot ignore which connect very closely to XMRV. Public health concerns about contagion for a cause of a disease killing large numbers of males would force investigation -- all by itself. The problem naysayers face is that it is easier to find XMRV (HMRV) in ME patients than anywhere else, (except possibly those with ASD, another contentious issue they would certainly like to avoid.) They also have a problem with a biomarker present in 80% of any diagnostic category. This is way beyond the correlation with markers for many respectable medical problems, e.g. MS.

    Other biomarkers are already out there, in the form of serological tests for immune response, and activation of specific genes. More immunological biomarkers are on the way. Pathological evidence from autopies is also hard to ignore. Just wait until correlations between specific neurological lesions and virus show up. These studies were started some time back; preliminary results should already be spreading through research grapevines.

    I left out a number of specifically female problems, not because they are minor, but because many people feel medical professionals are capable of ignoring these indefinitely. (I myself know a woman with an implanted nerve stimulator to control an over-active bladder. It looks to me like her problem has a direct parallel to protatitis in males, and her other symptoms clearly fit into ME/CFS. She is being treated by a neurologist, who has no doubt serious neurological damage has taken place.) I was trying to say that research is converging on something common to a large number of illnesses previously relegated to psychology. There just happen to be viruses, or evidence pointing in that direction, turning up in many areas.

    Fragmentation of patient communities has already taken place. What I'm seeing is convergence. The problem for professionals is how to control this, which they probably cannot succeed in doing. Every simple response puts them in conflict with powerful forces in various specialties. There is no single plan, and it shows. In such a situation, emphasizing confusion is a way to delay. This can't last forever.

    Simply delaying publication of the Lo/Alter paper caused an outcry which reached the general public via the WSJ and NYT. They can't stop publication of all results on contentious subjects without a centrally-controlled global conspiracy, which does not exist. More upsetting things are in the pipeline right now. I'm seeing a delay measured in months.

    I don't know what will come after that delay, but I can hope.
  11. George

    George waitin' fer rabbits

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    Gotcha! Thanks for that very lovely explanation.
  12. bullybeef

    bullybeef Senior Member

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    Sorry anciendaze,

    You misunderstand. Of course prostate cancer and XMRV cannot be buried, but the powers that be can legitimately dismiss any XMRV link with an ambiguous disorder that has been redefined umpteen times in the last several decades, and seems to have a different definition wherever you look.

    ME/CFS has been made to be a waste bin diagnosis by the very people whom are trying to stall the science, so their plan of combining people with ME with people whom have mental health problems could actually give them the loophole to slip through.

    These detractors have also actively sought to make sure there isnt a unanimously agreed diagnostic marker for ME. If theres no fully agreed marker, nobody can really prove anyone has ME; a ME diagnosis is simply an educated guess, and when it comes to a retroviral link, Im afraid that isnt strong enough.

    What is stopping these detractors from going to the WPI and saying to them, can you prove that the people whom you diagnosed with ME, that then tested xmrv+, have really got ME in the first place? Theres no diagnostic test to prove they have ME. The detractors can redefine XMRV associated disease as being something completely new, and ME/CFS will continue has it has been.

    The problem we have with the detractors is these are the people that right the history books; that teach the students, and that redefine the diseases. Theyve always had the power and the control, and the diagnostic ambiguity of ME, can give them the ticket to dispel the ME/XMRV link.

    BB
  13. anciendaze

    anciendaze Senior Member

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    Would you be having a rough day or week? (Or perhaps your own experience with cliques of UK insiders is distorting your view of a world which is considerably more diverse.)

    What I'm getting at with the pc XMRV link is that the mere possibility that XMRV is an infectious agent causing or promoting a cancer which is a major killer means they must pay attention to any cohort which is infected at an 80% rate. If their current definition is a wastebasket which contains no single pathological unifier, it will be forgotten as quietly as scrutiny allows. Any group with that 80% infection rate will have to be considered as carriers, even if asymptomatic.

    Right now, I believe there is a group of government researchers in this country scrambling to find some way to portray current discoveries as important successes. Say, for example, they can come out and say we've discovered a simple test which allows us to predict who will get prostate cancer, and which prostate cancers will be aggressive enough to require surgery. This could save lives, and save thousands of men from needless prostatectomies. (Which would incidentally save money.)

    They do not want to go to the public and say something like "we've received $100,000,000 to research CFS over 20 years without finding anything useful, and, oh, by the way, our blood supply has been contaminated for ages." (The findings came from cancer researchers and infectious disease specialists inside government research, plus an institute independent of federal funding, not those tasked with the job.)
  14. Dolphin

    Dolphin Senior Member

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    I'm trying to catch up. I just watched Dr. Joan Grobstein (who I know) - patient testimony #2 at:
    http://hhs.granicus.com/MediaPlayer.php?view_id=5&clip_id=99 and thought she was very good. I think the fact that she's an M.D. adds weight to what she says. I hope to watch some more soon (i.e. I'm not commenting on others now as haven't watched them).

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