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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by voner, Aug 14, 2010.

  1. V99

    V99 *****

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    First question, what is CFS? Is it not the symptoms caused by the disease?

    How does CFS depress the immune system? It's an important question, and one that has never been remotely answered by anyone. (for those to brain-fogged to understand what I am getting at. What is the trigger?)
  2. urbantravels

    urbantravels disjecta membra

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    It's also my understanding, that epidemiologically speaking, there is a big difference between finding a given infection in, say, 10-20% of patients versus finding it in nearly 90% of patients. Co-infections in CFS have been studied for a long time, and long understood to be most likely "passengers" rather than the ultimate cause of the disease process, and none have ever been found in the majority of patients.

    Yes, to be thorough and cautious, one must still say we don't know in which direction the arrow of causality is pointing - but what opportunistic or passenger infection turns up in 80%+ of immunocompromised patients? Do 80-90% of AIDS patients all have the same opportunistic infection, or transplant patients on immunosuppressive drugs? Of course it's *possible* that the X and P MLV's are just "passengers" - but what is the *probability* of that, given the numbers?

    I think it's obfuscation to say that this is just a 'family of related' viruses - Harvey Alter himself seems quite clear that the situation is no different from the natural variability of HIV or Hep C.
  3. CBS

    CBS Senior Member

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    Hi Alan,

    Thanks for stopping by. As I'm sure you'll see from a review of the posts here, the CFS community is quite diverse (in a way, I'd say we're a large cross section of society).

    One comment on your second alternative hypothesis on MLV's being bystanders taking advantage of a compromised immune system. This is clearly amongst the possibilities that must be investigated and confirmed or ruled out.

    However, the notion that "CFS is causing the retroviral infection" lacks parsimony and unnecessarily introduces the need for an entirely undefined entity which you refer to as "CFS." The CDC made up the label "CFS." There is very little agreement as to the definition of "CFS" and yet "CFS" is now being endowed with the power to compromise immune systems (something the CDC states is exclusionary for a Dx of CFS) and facilitate a retroviral infection.

    My bet is on the least complicated explanation that relies upon the fewest leaps of faith and ad hoc definitions. That said, I'm willing to wait for the research now that this syndrome is getting the serious attention it deserves.
  4. V99

    V99 *****

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    I agree with CBS. What patients want is funding into the biology of the disease.

    Alan, you are most likely unaware of how difficult it is to get funding in that area and how much is already known. Expert ME/CFS doctors will already tell you that biomarkers already exist. Why are they not used?
  5. Wasbeer

    Wasbeer

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    Hi Alan,

    I think you're a great sport explaining yourself here in person. Ofcourse you're not the enemy, but I hope you can understand that a lot of patients feel very emotional towards these subjects, especially when the psy-word is used. I agree with you about the stigma mental illnesses carry. That's wrong, but it's no reason to stick psychological labels on people without proper proof.

    A problem with CFS is that a psychological cause has never been proven. Nevertheless, a lot of doctors, when confronted with absence of physical evidence, immediately jump to using a psy-word and than think their work is done. We, as a patient community, almost unanomously think and feel that the cause of our illness is not psychological, but that is something that's impossible to prove. How can you PROVE that you are NOT psychologically ill? It's impossible, because all denial by patients is seen as confirmation.

    Like a lot of my fellow patients, if a serious clinical trial with antiretrovirals will be started tomorrow, I would be the first to inscribe. I appreciate all the concerns that doctors seem to have about the side effects, but my uncle is on antiretrovirals because of his HIV, and I would love to trade my CFS symptoms for his side effects. No doubt about it. Ofcourse causality has to be proven, but with a percentage of 86.5%, what better way is there to prove causality than to start those clinical trials? Three ARV's have already proven themselves in vitro, so what's keeping the research community?

    Caution can be a good thing, but too much caution is dangerous as well, I'm pretty sure that if doctors and researchers don't take the lead now in clinical trials, more and more patients will start their own 'clinical trials', they'll go rogue, without proper supervision. Isn't that far more dangerous? I know I am running out of patience. I'm sick for 11 years now, and it took a concerned patients's mom (Annette Whittemore) to finally shuffle the paradigm on CFS. Eleven years I can never get back, so maybe you can understand that there is not a lot of trust towards the medical community within our ranks. Some caution is okay, but action is long overdue.

    Pardon my English, I'm Dutch, I hope you understand me. All the best!
  6. leaves

    leaves Senior Member

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    Hi Alan
    Thanks for stopping by: that shows strength of character and an open mind. I am one of those people that tested Xmrv positive. My mothers mother also had cfs and my mother has autoimmune diseases ( she can't get tested as she lives in Europe). Since I was a toddler I have had weird symptoms; neurological ( I don't respond to the knee response test) memory ( I can't remember my own phone nr) and recurrent infections ( I had chronic shingles from 12 to 15 on both sides of my spine (something the drs only said to have observed with aids patients) could you please explain to me how a small child makes that happen? My mind must be so strong I can be the new Uri Geller :)
    Oh I have friends, enjoy life (although i hate it that i have to spend so much of it horizontally) and my harvard trained psychologist is convinced i am in good shape mentally.
    Now if you excuse me; im going to try bending spoons ;)
  7. SOC

    SOC Moderator and Senior Member

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    Can someone help me out here? Did Drs Alter and Lo, et al, find different species of MLVs in CFS patients or different variants? HIV-1 and HIV-2 are different species, but are still considered causative of the same illness, so what's this big deal about there being different MLVs? Drs Alter and Lo called them CFS-1, CFS-2, CFS-3, etc, just like the HIV species are named, so I'm guessing different species, but I haven't been able to process the paper well, yet.
  8. akrasia

    akrasia Senior Member

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    My wife's occupation certainly does color my world view, but again I wasn't trying to attack anyone. Quite the opposite. Mental illness carries a huge and inappropriate stigma in our society, so whenever the topic comes up I do feel the need to take a strong stand. In one of the first CFS discussions we had on TWiV, someone actually raised the issue that the disease might be "just psychiatric." I immediately jumped in and reminded the audience that a psychiatric disease is no less real than any other medical problem. Whether there's a psychiatric component to CFS or not, I wanted to head off (and keep heading off) any idea that it's "not a real disease." In other words, I'm on your side whether you realize it or not.[/QUOTE]


    Alan,

    I’ll leave it to others to discuss the Alter paper. There are, unfortunately, very good reasons why people with CFS distrust the psychiatric.

    When the CDC, and the NIH for that matter, got involved with CFS, around 1984, a description of the illness already existed: it was Ramsey’s definition of an illness called myalgic encephalomyelitis, whose icd code was under the neurological. This was, most likely, the illness that people in Incline Village and Lyndonville, NY, two of several cluster cases, contracted. When the CDC came up with its first research definition in 1988, they, for reasons we are still trying to understand, included psychiatrists in the discussion and changed the name from m.e. to chronic fatigue syndrome, trivializing a very serious neuro-immune disease and throwing the people who were sick with it under the bus.

    This gave legitimacy to endless misrepresentations and mockery. It also empowered both the CDC and the NIH to starve it of funds and to shun bio medical research. Stephen Straus, the head of the NIH CFS program, was heard to say, “We have got to get those ladies back into their BMWs.” This is all recounted in what one day will be seen as a work of major historical importance, Oslers Web, by Hillary Johnson.
    When the WPI published its paper CFS was on the verge of being included in the DSM 5 and having its icd code changed. That would have buried us. Our doctors are ageing and research, such as it is, carries very little cachet or attracts much funding.
    From the point of view of history, psychology and psychiatry often have stepped in to explain all kinds of illness with devastating consequences for their victims. The idea that the medically unexplained should default to the psychological debases psychology as a discipline.


    We have been treated to the most inane and inaccurate projections by psychiatrists. These have filtered out to the larger world engendering all manner of social disintegration. Marriages, families, friendships have been destroyed. Our very claim on being worthy of medical attention has been ridiculed. Doctors, if you have one at all, often see us as the proverbial problem patient. Did you know that suicide is one of the leading causes of death for CFS?

    My indictment of psychology and psychiatry centers around the fact that they failed this population by not recognizing how marginalized it was, how desperately some of us needed support because of enormous physical and emotional suffering. Instead, we were ordered not to pay attention to our symptoms, that we were hypervigilant and activity phobic, and when we told these doctors that exertion made us ill, they blithely assimilated this to their impoverished model. They didn’t listen. People have been harmed by these treatments. If anything, you should be more concerned about the damage psychiatrists have done to us rather than fret about the possibility of taking ARV’s under the direction of an experienced infectious disease doctor.

    If you really are sincere about wanting to understand the illness, you need to educate yourself about the role of psychiatry in CFS.
  9. Esther12

    Esther12 Senior Member

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    Hi Alan.

    I quite agree with all the other comments in praise of you for coming here to read about some of our concerns.

    I do think that there's a danger that some now slip into an easy presumption that there should be no stigma around mental illness, and that it is not any more fair to blame people for the chemical operations of their brain than the operation of their gut. This is a belief that seems surprisingly wide-spread amongst scientists and psychologists, while being unsurprisingly widely rejected by moral and political philosophers. Surely we need to hold people accountable for the operation of their minds and the decisions they make. If we are ill because of our fear of accepting the responsibilities that come with good health, or a desire to maintain the sympathy of others and comfort of a secure sickness role then this is a disgusting way to behave, and we deserve to be hated for it so much as anyone deserves to be hated for immoral and unreasonable behaviour.

    But thats something of a side issue, I just think it is one which may lead to an inappropriate carelessness when it comes to discussing the mental health of others, detaching it from the moral concerns which should be innate.

    To me, almost all of the psychosomatic research that surrounds CFS seems poorly thought through and based upon the flimsiest of evidence, or else is openly worthless. But maybe that's my ego attempting to protect me from the realisation of my own madness? It seems that many of those working on the psychological side of CFS, for all their self-professed sophistication in understanding the psycho-social factors the surround illness, seem deeply uninterested in the intense strain and hardship they cause by so casually questioning the sanity of an entire group of already widely maligned patients. If there was compelling evidence that we were mentally disturbed, then of course they should not hide this in order to save our blushes - but I do think that their bold speculations about a potentially psychological nature of CFS should wait until they have this evidence, not just because of the widespread stigmatisation and increased isolation their work can bring to CFS patients, but also because undermining ones ability to assume ones own (at least marginal) sanity is in itself a severe hardship.

    Youve spoken about the need for caution with regards to CFS and XMRV, but have you written about the need for caution amongst those who believe CFS should be treated as a psychosomatic/functional/hysterical/medically-unexplained(wink-wink)/malingering condition? Is this something which concerns you or your wife? What evidence do you think would be required before treating CFS as a psychological condition would be acceptable?

    Thanks. I have caused some conflict on this forum by trying to engage with the psycho-somatic wing of CFS research (eg: this thread when we realised some of them were visiting the forum: http://www.forums.aboutmecfs.org/sh...dic-who-thinks-CFS-is-primarily-psychological!), and I certainly think its possible I could be mentally disturbed (its distressingly difficult to rule out the possibility) but I also really think that the way CFS has been handled by the vast majority of psychologists specialising in it is deeply immoral and unreasonable and would be interested to hear what you though, and if you hold their work to the same standards as the bio-medical CFS work.
  10. cfs since 1998

    cfs since 1998 *****

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    I wouldn't be so sure of that.

    As long as you don't call it chronic fatigue, which is not the same thing.

    Self-righteousness and condescension strike again. You apparently see a need to come here and "educate" us, who you perceive as clueless simpletons. Maybe if you didn't have such an attitude, you wouldn't have insults directed at you.

    Nobody is leaping to conclusions. Several thousands of studies have shown that CFS is a disabling neuro-immune disease, and patients also have elevated cancer risk. Retroviruses cause neurological disease, and immunological disease, and cancer. Patients have put two and two together with rational thought and logical--not "leaping to conclusions".

    A couple of historical quotes for you:

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome “is an acquired immune deficiency syndrome and we are presently searching for evidence of retrovirus infection in our patients.” Murdoch, The British Journal of General Practice, 1987.

    “The results of the present study...as well as the combined results of a number of studies in the literature...suggest that CFS is a form of acquired immunodeficiency.” -- Klimas et. al., Journal of Clinical Microbiology, 1990.

    What a novel hypothesis. Do you think AIDS causes HIV too?
  11. V99

    V99 *****

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    The really big question is how would a psychological cause explain the abnormalities that are found in the endocrine system, the nervous system, the heart, the muscles, the blood, etc. How did that leap occur?
  12. V99

    V99 *****

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    Some quotes:

    1956, May 26: E D Acheson. "A New Clinical Entity?"
    1959: E D Acheson. "The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia"
    1977, May 21: Letter from A M Ramsay, E G Dowsett, J V Dadswell, W H Lyle, and J G Parish. "Icelandic Disease (Benign Myalgic Encephalomyelitis or Royal Free Disease)"
    1990, June: Klimas et al. "Immunologic Abnormalities in Chronic Fatigue Syndrome"
    1990, July: E G Dowsett, A M Ramsay et al. "Myalgic Encephalomyelitis--A Persistent Enteroviral Infection?"
  13. SOC

    SOC Moderator and Senior Member

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    Does anybody else wonder if we're just talking to ourselves?
  14. urbantravels

    urbantravels disjecta membra

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    I am going to presume for now that message from Alan wasn't just a drive-by, while remembering that there are many people in the world who do not in fact hover over the Internet every waking moment and/or have other things to do besides watch this message board.
  15. leaves

    leaves Senior Member

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    Heheh :) he must be overwhelmed by now ...
  16. Recovery Soon

    Recovery Soon Senior Member

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    Without a Doubt. The guy came here and tried to offer an olive branch and it just sparks more outrage from some.
  17. V99

    V99 *****

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    I don't think there was outrage, just a lot of people trying to supply facts.
  18. Esther12

    Esther12 Senior Member

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    Some of the posts seemed a bit too aggressive to me. But some too soft as well!

    We've all got different standards and I expect Alan is able to understand that. I've not replied to some of the posts here I've disagreed with when they were directed to Alan, and there's always a worry that this can make it look like we all agree with each other's comments - but I think it's pretty clear that this is not the case.
  19. V99

    V99 *****

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    We also have different cultural backgrounds and writing styles/abilities
  20. leaves

    leaves Senior Member

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    Ai I hope it wasn't my poor spelling that drove him away ... Sorry everyone!!!:ashamed:

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