The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Chronic Fatigue Syndrome edited by Stephen E. Straus (NIH) Retrovirus Chapter

Discussion in 'Action Alerts and Advocacy' started by spacee, Sep 14, 2010.

  1. spacee

    spacee

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    Dr. Straus is our very evil foe from the NIH. He died in 2007. He was removed from CFS in
    1999, I think but his influence is still vast. For example, one year after his death the
    Harrison's Principles of Internal Medicine which is the doctor's "bible", the 4th chapter
    is on Chronic Fatigue Syndrome and written by Strauss.

    I digress: The Book mentioned above, last paragraph in the Retrovirus Chapter

    As new laboratory technologies are developed and new epidemiological information is
    accumulated, the final chapter may be written concerning the potential role of retro
    viruses in this debilitating syndrome. In the meantime, health care providers should not
    indicate to their patients that convincing evidence associates CFS with a retrovirus."

    This book was written in 1994. And actually mentions Elaine DeFreitas as a friendly
    colleague and not the person they ruined the professional reputation of earier.

    Ok, Yes it is time to act! My emails will be ready by tomorrow to Collins and Fauci.

    BTW, this book sells for $199 at Amazon or less if you google. (I paid $9.99). A book
    published over 15 years about about CFS is still popular with doctors...of course it is.

    Spacee
     
  2. free at last

    free at last Senior Member

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    I find that sentence actually quite scary as it seems to suggest they knew all along that a retro virus might be involved but were advising people to down play the idea, very very weird. Thanks for pointing that out
    And thanks for nothing Dr Straus
     
  3. spacee

    spacee

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    It is very very weird.

    Just want to clarify because sometimes I am not clear :) Those were actually two books I was writing about. The one with the quote a 1994 book with a chapter on retroviruses.
    The other a 2008 'bible' that is used currently. I have not looked at the chapter (don't own the book) but I bet it doesn't mention retroviruses there! I am not scheduled to see
    my doc for a while but I will be asking if he has that book (bet he does) and if I can have a look at the 4th chapter.
     
  4. xrayspex

    xrayspex Senior Member

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    I would love to see what STraus first thought about cfs when he admitted it was viral related. isnt the story he was just bummed it was chronic epstein barr or something and then turned psychological on us? Wonder if he really believed it or if total cover up to save money. I really bet his cancer was his reaction to exposure to the virus ironically. Cheney told me he feels his heart disease was caused from the virus, that it was the form it took in him, and he thinks he remembers the day it might have hit him in 80s but then he didnt get sick at the time.
     
  5. urbantravels

    urbantravels disjecta membra

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    The story in Osler's Web is that Straus got very hyped on HHV-6 at the time it was discovered, thought it would be The Answer to CFS, and when it turned out it wasn't, he reversed course entirely and went the psychological route.

    In the book, there are some secondhand reports of him acting absolutely crazed with disappointment that HHV-6 didn't pan out as the cause, so it might seem that he was very invested in being part of a fabulous discovery and when that went sour, he essentially turned on the disease itself. Not to mention the patients.
     
  6. xrayspex

    xrayspex Senior Member

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    right, thats what i thought, meant to say he was bummed it was NOT just epstein barr.
    Very bad when egos get in the way of public/world health eh......
     
  7. *GG*

    *GG* Senior Member

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    This is a sad statement in regards to this Dr. Strauss. I am sure it is hard as a researcher or what not, but it sounds like he is not of high moral character. Although, it could be part of being a Doctor, treating patients, they do need to be able to turn off their emotions depending upon what they are dealing with, otherwise they would not be good Drs. At least this is what I heard recently, and seems to make sense?!

    I mean when you see so much suffering, and most doctors are rather useless at treating this disease, has to get very hard on a person after a while. Probably why we have so few Drs that are good for our Community!
     
  8. anciendaze

    anciendaze Senior Member

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    Strauss had a good reputation as a researcher, but a poor record in dealing with patients. In trials of drugs completely unrelated to CFS/ME, he even lost some patients, quite possibly because he either felt part of the experimental protocol was their responsibility, or because he ignored complaints indicating life-threatening reactions.

    By sheer chance, Brian Hyde was sitting next to him when he got the draft of the CDC report which said his hypothesis of EBV causation was wrong. (See footnote on p. 321 of Osler's Web.) His response was bizarre, and he immediately blamed the patients for misleading him! The later failure of the HHV-6 hypothesis further fixed his opinions.

    These are serious failings for both a clinician and a research scientist. However, I want to get beyond the personal failings, because I have never met a scientist without such. Sometimes they are harmless foibles, sometimes they are very serious. The purpose of modern organized science is to get beyond the purely personal quarrels over authority typical of renaissance disputes about knowledge. In this case, both specific organizations and institutions -- and the profession as a whole -- failed badly.

    One example is the publication of his study of 28 patients, chosen by him in an unspecified way, and diagnosed as having preexisting psychological problems primarily by a doctor without specialist qualifications in psychiatry, using criteria criticized at the time by psychiatrists. This was announced through press releases to 500 reporters and organizations as a definite statement on CFS. How a paper this bad got through review is one question. Why it was given such unthinking official support is a very different one. To compound the error, by making this view -- based on weak evidence -- the basis of policy, was a prolonged collossal mistake which requires much more explanation.
     
  9. xrayspex

    xrayspex Senior Member

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    anciendaze, do you recall that paper because you were following it at the time, or from Osler's Web?

    Do you think there is any useful approach in talking to doctors today given that sordid history and the still sorry state of affairs for cfs patients, specifically with trying to talk to say a well meaning PC doc who doesnt know that history, and is skeptical about cfs/xmrv and more into fm as a working diagnosis and cbt and get treatments because of studys that supposedly support it, there was a recent study I list in another thread, a study for example from aug in family medicine news about fm responding well to cbt and exercise.

    Does one try to tell the abbreviated version of Oslers Web somehow without looking kooky....I am at a loss because I feel like those discussions aren't that useful w/docs who are overworked and spoonfed misleading studies or ideas in the little time they do have to try to stay up on things. Its very frustrating, how do you tell a doc they have been played without sounding like a conspiracy theorist out of Linklater's film "slacker"? but to do nothing is no good either, how to educate? if they only have time for one study to cite that says it all somehow best, which one then......?
     
  10. Countrygirl

    Countrygirl Senior Member

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    Hi Spacee,

    Can you tell me which volume this is in, please, as I would like to buy it.

    Thanks,

    C.G.
     
  11. anciendaze

    anciendaze Senior Member

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    At the time, I was getting my news through mainstream media which blazoned headlines about how the whole CFS debacle had been a mistake across the major newspapers and magazines. After that I was careful not to claim I had CFS for many years. This took me along the psychiatric route. Curiously, my psychiatrist was willing to believe I had an unknown physical problem which really disabled me, though he described this as acting via depression, not neurological or metabolic disease. (That is, there must be some explanation for why I prefer to lie in bed and contemplate the ceiling that he couldn't uncover.) I didn't reconsider CFS/ME until this year, when I decided to read the papers presenting different views of the research published in Science. The contrast between the multiple methods in the Science paper and the emphasis on PCR and artificial controls in the negative studies, particularly in relation to the claims, caused me to go back and read "Osler's Web", which I had earlier dismissed as a conspiracy theory. I did check that such a paper by Straus really was published as described. It still looks unbelievably weak.
    I'm still working on this with two friends from college who are now MDs. I hesitate to attempt education of physicians who don't know me as well. It's hard to accomplish much of anything useful when a typical exam takes less time than sexual intercourse.

    Medical professionals tend to move in herds. You have to identify opinion leaders and convince them. The other problem came up long ago, when I had no idea my problems might involve my heart in any way. I was impressed by the way some Canadian researchers had applied new methods from dynamical systems theory to the study of the heart. I even lent a book on the subject to a doctor. Ten years later, when my father developed heart trouble, I was dismayed at the lack of progress. In this context, I remember an interview with a doctor at an innovative clinic applying these methods. When the reporter asked him why it had taken 10 years to get the first such clinic in the U.S., he said, "cardiologists tend to live a long time."

    The media steamroller just keeps going. Time magazine has a piece in the health section about how researchers in the Netherlands have proved that negative illness beliefs cause heart trouble. They didn't mention the viral debate at all, let alone Paul Cheney's striking findings about diastolic dysfunction in long-term CFS sufferers. Most medical people have the impression he was discredited for making wild unsubstantiated claims long ago. If you have believed this for 20 years, it may not be possible to revise your beliefs when evidence shows he was likely right about the central claim of an infectious organic cause. His new findings on diastolic dysfunction will need confirmation, but these connect infection, symptoms and specific physical signs very directly.

    It looks to me like we now see another reason the Netherlands group didn't want to find a virus, it would have demolished other research already under review for publication. Reports I've seen, (not the paper itself,) sound like they have a grab bag of heart conditions. Finding a single common physical problem would point to an organic cause. And the beat goes on...
     
  12. xrayspex

    xrayspex Senior Member

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    anciendaze you make a lot of sense. but it doesn't make the pill any easier to swallow. I'd heard something about that heart study, its surprising they are not just discriminating about CFS and FM now, they are moving onto other illnesses. The study I am concerned about that my physician tried to "helpfully" bring to my attention was also from the Dutch! What are they trying to do over there? I am ignorant on this, but do they have socialized medicine like UK? Because I see psychology being employed w/methods like CBT as well as Motivational Interviewing (MI) which is similar to help docs appease clients in the moment but not really give them anything, to deflect resistance or upset and provide superficial validation they have been heard. This really concerns me as I am in the field part time and can see it close up, although those techniques can be very useful as tools of conversation my fear is that they are going to be used to get out of paying for other aspects of healthcare. What I don't understand though about what I have heard in the UK, is it sounds rather expensive, some of the psych stuff they push on the ME patients, even sending a nurse into their home, I don't see how that necessarily saves them money in their healthcare so I don't understand the motivation completely if its not $, but I guess w/Straus it was ego....
     
  13. Daisymay

    Daisymay Senior Member

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  14. anciendaze

    anciendaze Senior Member

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    By US standards the Netherlands certainly has 'socialized medicine'. The US has Medicare for people over 65, where lots of problems show up, and for younger people who are disabled. The advantage of psychiatric diagnoses is that patients don't like psychiatric diagnoses or treatment, and thus do their best to avoid using resources made available.
     
  15. urbantravels

    urbantravels disjecta membra

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    Not availing yourself of psychiatric treatment is in fact the rational choice when the "treatment" is counter-productive, as CBT/GET is (I refer here specifically to the type of CBT designed to overcome "mistaken illness beliefs.") Without getting into the politics of who pays for the health care, I think it is a fair bet to say that whoever is paying the bills for health care *always* has the motivation that they would rather not pay, and that they would certainly rather not pay for any treatment of unproven effectiveness.

    I would hazard a guess that there are some pretty deep cultural reasons why the UK has evolved such a peculiarly unified and detrimental approach to ME/CFS, but in a demented sort of way, it makes sense for the NHS to have *something* in place as a standard of care in order to claim they are doing something about the condition. Otherwise they would have the political problem of dealing with a large group of sufferers not having any treatment at all available to them.

    Here in the lovely pre-reform US health care system, we don't get treatment either, particularly, but we are all having that individual struggle with our individual health care providers (if any) and insurers (if any). So it is less of a political problem at the higher levels. Patient experience is fragmented and individualized for us - we are dependent on the whims of whatever provider we're stuck with as to whether they'll provide us any care at all, or what kind they'll provide. Those with the means can travel long distances and pay out of their pockets for the handful of providers who know anything at all about the disease, but that's true in any country, under any system.
     
  16. spacee

    spacee

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    Hey Country Girl...we have talked and you have the info.

    My opinion of Straus falls into a couple of categories and I'm not sure which fits, maybe all.

    1. Some extremely bright people are completely weird. :)
    2. Maybe he wasn't as bright as he wanted to be. Dr. Cheney says that Straus as an infection research, worked like an engineer (his 1st degree was from MIT) and that he look at
    viruses as if the world was flat (you know before they discovered it was round).

    I am sorry but I am somewhat jaded over the NIH and CDC and I wonder their motives for even working there....it can't be money...it's the GOVT!
     

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