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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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They be watchin us. . .

Discussion in 'XMRV Testing, Treatment and Transmission' started by Levi, Dec 2, 2009.

  1. Kati

    Kati Patient in training

    LOL Blackbird- I will tell that one to my dr
  2. Marylib

    Marylib Senior Member

    New Zealand
    waste basket


    I have had two docs actually tell me that. Before I left the office...as fast as possible.
  3. PoetInSF

    PoetInSF Senior Member

    I wouldn't bother reading "science-based" blog that manufactures this kind of non-existing facts and then get worked up about it.

  4. oerganix

    oerganix Senior Member

    Saturday Night Live here we come!

    Marylib and I are working on a stand-up comedy routine. But we are aguing about who has to stand up. We both want to be on the couch.
  5. Samuel

    Samuel Bedbound with NO DOCTOR

    Let's make a buck

    I thought this was an actual bet. There are sites for that.
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama

    Well, the betting doesn't bother me, now posting about it publicly is not cool. I have dealt with detectives in my news reporting. You can't be gloom and doom and serious every moment of every day in dealing with your job. I know this one detective who was handling a stolen cow (I live in suburbia) case. She had workmates leave plastic cows on her desk and all types of tomfoolery. But for the man whose cow as stolen, I am sure it was a very serious matter to him.

    As long as the doctor tries to cure me and listens to me, then I don't care what jokes he makes about me at his dinner parties with another doctor. But it isn't wise to put such things in a public place.

    And the fact that previous supposed biological causes for CFS turned out to be false, I can understand the skepticism on this one.

    The problem is not the doctors folks. They know what they have been taught. The problem is a lack of research and information from the government, therefore, a lack of training in medical schools. It's foolish to expect every doctor to be like Klimas or Komaroff. But wouldn't it be nice if we could clone Peterson?

    But that all may be changing now.

  7. Marylib

    Marylib Senior Member

    New Zealand
    For my lie-down comedy partner,Oreganix

    Right on sister!:D
  8. annunziata

    annunziata Senior Member

    Hudson Valley
    It is not unreasonable to expect doctors to understand the significance of things like low NK cell function, which is very serious and known to correlate with the way a patient feels. There are thousands of peer-reviewed medical journal articles documenting the organic basis for this disease. It is not alone in being an illness whose cause is still undiscovered.

    Recognition of CFS/ME as a real and terrible disease should never have been -- and shouldn't now be -- dependent on discovery of a cause. Wanting to see replication of the WPI study is reasonable (I want to see this, too). Unfortunately, questions about specific research have always translated into skepticism about the disease.

    I'm not persuaded that all previous work suggesting involvement of a retrovirus is irrelevant.
  9. anne

    anne Guest

    I agree. My husband went into an infectious disease doctor with his massive EBV levels and she shrugged and said, "I can't help you." I have a friend in Boston who cannot even get anyone to consider CFS as a diagnosis--they run blood tests and shrug and come up with the first explanation they can think of and send her out the door; she can't find a single person to evaluate her. I saw a young doctor after having a terrible POTS relapse and she informed me I couldn't possibly be orthostatic at my age and wouldn't do the basic orthostatic test. A colleague's daughter--who perfectly meets Dr. Bell's pedCFIDS criteria--was told by the Mayo Clinic that CFS was a meaningless diagnosis and thus gave her no diagnosis and sent her on her way, with no help at all, and *I* have to try to explain that THE MAYO CLINIC KNOWS NOTHING ABOUT CFS AND SHE SHOULD LISTEN TO ME without sounding like a deranged moron. The Cleveland Clinic searches for mood disorders in CFS patients. I bet if you polled 100 doctors, maybe one of them would know there was NK cell dysfunction in CFS. My husband has to fly to Nevada, not just to get the best help, but to get any help at all.

    What shocks me is the lack of curiosity. The laziness. The shrug, "I can't help you." The firm belief that there is an iron circle around the sphere of their knowledge and nothing outside of it can possibly be significant and there's never any need to look.

    I know plenty of doctors who aren't this way, doctors my husband and I have both seen who have gone and done research and talked to colleagues and tried to find out what they could, doctors who took us at our word that we were sick and did everything they could to increase their own sphere of knowledge so they could help us. But there are far too many who don't.
  10. annunziata

    annunziata Senior Member

    Hudson Valley
    Exactly. There was a colossal failure by the medical profession, a failure of intellectual curiosity and of clinical acumen.

    Has your friend in Boston tried Komaroff? I don't know if he still sees patients, or to whom he might refer someone. I haven't consulted him myself so am not sure what he's like; it's just a thought. He did some very good research involving SPECT scans -- I submitted it to my ins. co. as part of my defense of my claim.
  11. anne

    anne Guest

    Yeah, he's closed, unfortunately, and her insurance is only instate.
  12. kurt

    kurt Senior Member

    this is research, not a referrendum

    Unfortunately some people following XMRV are trying to turn the research findings and replication studies into a type of referendum on CFS. But this is research and not politics, and in research things do not always work out the way we would like. A failure to confirm XMRV would not be a failure to accept CFS. It would simply mean that researchers are continuing to try to find the cause and do not have it yet. The XMRV finding will stand or fall on its own, nobody can predict that.

    Those doctors betting against XMRV may just be remembering how many other promising research findings have fallen by the wayside with CFS. Somehow I think we have suspended our disbelief a little too much in this case. The WPI excitement is very compelling, but it is still a preliminary finding that requires extensive confirmation and follow-on research.
  13. CBS

    CBS Senior Member

    Western US
    Never argue with "I can't help you!"


    Over 16 years of dealing with this has taught me one thing, never argue when a doctor says "I can't help you!" Once that attitude has been adopted they've closed the door on you already. The last time I heard that I just stood up, thanked them for their time, told them that I agreed that they could not help me and then walked out.

    It is simply not worth the time or the grief to try and change a mind like that.

    I also don't talk a lot about CFS. I've found that CFS is so loaded and means so many different things to different people that unless you make sure you're both talking about the same thing it often confuses more than it increases understanding (the whole point of communication!).

    I have gone through more physician than I can count but I now have a group of wonderful physicians and I am careful not to ask any more from them than each one can offer. I especially steer clear of the word 'CFS' with my endocrinologist (he doesn't want to go down that road and I think it distracts him but he can see all of the endo problems - they've gotten more and more florid over the years so we just talk test results and med effects - because I have other docs that appreciate the bigger picture I don't need him to 'get it').

    My GP takes my CFS doc at his word (especially as the CFS doc is an infectious disease specialist that emphasizes documented immune deficiency and viral infections) and because of this my GP is actually willing to learn about something he was skeptical about when I first walked in the door. It has also helped that my cardiologist and endo are so clear on what is wrong within their realms.

    As a group, I have personally found that Infectious Disease docs have consistently recognized that there is a problem even when they couldn't put their finger on the exact nature of the problems.

    HMO's can be tough to deal with and I do appreciate that ME patients in the UK have a tough time. I don't envy those stuck in either system.

    Hang in there (and don't put up with closed minded docs), there are good people out there who do want to help.
  14. Dolphin

    Dolphin Senior Member

    (I'm not sure what your last sentence is saying so this response applies to the rest of it)

    What Peter White was referring to was a correlation.

    Also as I recall, the correlation applied not to recovery but to improvement. He is wont to claim in recent years that GET and CBT based on GET can lead to recovery but that's because he uses a rubbish definition of recovery. But it's very annoying that he does and it puts extra pressure on patients to have to do GET or CBT based on GET before they'll get a payment from an insurance company in the UK (and elsewhere).

    Anyway the basic correlation is that people with CFS on disability benefits are less likely to improve/recover. And I believe this is from a study (Powell) that used the Oxford criteria for CFS, that just requires fatigue that has lasted 6 months.

    It is known that this is a heterogeneous definition, covering around 2% of the population.

    A much more simple explanation is that the people on disability benefits were either more severely disabled which generally in the ME/CFS area means you're less likely to improve/recover or as a group, the group on benefits had a higher percentage with "proper" ME/CFS and the group not on benefits had a smaller percentage with "proper" ME/CFS and more with some fatigue state that might improve with time or, in an intervention study, with GET or CBT based on GET.

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