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"XMRV is Not CFS" From Mary Schweitzer

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Nov 14, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Mary Schweitzer on XMRV, XAND and CFS from Co-cure

    As always very interesting from Mary. My only objection, if you can call it that, is that the current definition of CFS is so encompassing that its hard to know what it defines. A definition of CFS is not synonymous with a psychosocial definition of ME/CFS - researchers of all sorts (physiological and psychological) call their patients 'CFS' patients. Dr. White is not by an means the arbiter of thought regarding what defines CFS in the research community. If XMRV holds up it will certainly redefine this disease dramatically. I don't think we can keep CFS and XAND separate at this point simply because we don't know enough - we don't know who has XMRV and what it means to have XMRV.

    Since is XAND is an umbrella term; right now according the WPI it appears to define a wide array of diseases - possibly even MS and autism and well as cFS - I think another term for the CFS subset of XAND might have to be developed.

    Mary's last question is a very good one; what will happen to the non-XANDERS? Since their numbers will be diminished they may very well be in worst shape than before.

    Dr. Reeves had no idea how his cohorts will turn out when he said those statements the CDC (HIV section) hadn't even begun testing his samples. His comments are essentially meaningless - and I think the fact that he made them must have just boggled his superiors minds.
  2. gracenote

    gracenote All shall be well . . .

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    great explanation

    Thank you Mary Schweitzer!

    I love how you have spelled this out. Your simple analogy (which I will turn around) is very helpful to keep in mind as we move forward.

    XMRV is to XAND as HIV is to AIDS
  3. dannybex

    dannybex Senior Member

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    I agree and disagree...

    ...with several of her pronouncements.

    Yes, XMRV may play a huge role, and may probably be the 'Puppet Master' as Cort so wisely suggested and Mary implies. I certainly don't think it acts alone, or is the sole cause.

    But I'm sorry...I get riled up when anyone implies that they have "real" CFS/ME/XAND...whatever you want to call it, while others don't or won't have it. Doing so negates the reality of acknowledged and known subsets (those with chemical sensitivities, environmental exposures, etc.) that are just as disabled as those who may have no XMRV or antibodies -- past infections -- from the XMRV retrovirus. Keep in mind that Dr. Peterson said some sample cohorts came back at only 60% positive.

    As Cort said: "A definition of CFS is not synonymous with a psychosocial definition of ME/CFS."

    Mary says: "And if you are tested, and found negative, do not be discouraged. Hopefully the research now begun will continue and branch out."

    I'm sorry, I just find that statement to be premature and somewhat patronizing, however unintentional.

    Continuing: "Above all, we cannot allow ourselves, as a patient community, to be divided."

    Well...personally, I find parts of her letter exactly that...divisive. "Real" vs. "oh, you must have something else".

    She says that "XAND is to XMRV as AIDS is to HIV". That may very well be true, but I personally think that has yet to be proven. It would be very interesting to go back to the healthy controls and find out if any of them also have any of the coinfections -- CMV, HHV-6, HHV-7, or EBV -- that she has, yet are not sick in any way.

    And while she makes these connections between various infections and XMRV, she misses the boat completely IMHO, when it comes to the stress factor. There's been an endless discussion over on CFSFMExperimental about stress as a factor in many with our disease...probably 30 posts...until someone concisely replied:

    "stress = cortisol = XMRV activated..."

    Sorry to vent...just disagree with some of her points. If any of my statements come off as rude or insulting...please let me know. That's certainly not my intention. :)

    just my two pennies...

    Dan
  4. InvertedTree

    InvertedTree Senior Member

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    Well said Dan. I had a similar reaction but couldn't put it into words as nicely as you have. I am troubled by several statements she made also. I didn't find anything you said rude or insulting...
  5. With respect, I agree with the original post by Mary.
    Before I start - remember.

    Many many people outside of the UK use the label CFS when they have
    ME or XAND (or both). No one in the UK (with genuine ME) uses the word
    CFS. CFS is for people who are cured by saying the word 'No' in 3 days.
    Ok? So understanding that, that CFS in the UK is a joke - lets continue.

    CFS is not a disease, it's a syndrome.
    Chronic Fatigue Syndrome or Chronic Tiredness Syndrome to be exact.

    Anyone can have this diagnosis with ZERO blood work up, and ZERO other diagnostic tests (Cardiac/Immune/Autonomic etc). How is that a serious neuro immune illness? CFS means nothing, and never was anything which is why in all these years the CDC, the British NHS, and every other government in the whole world did precisely NOTHING for people with CFS, because they never had CFS - they had a retrovirus or were misdiagnosed.

    By medical classification if you have XMRV, you cannot have CFS.
    CFS is 'unexplained' chronic fatigue. XMRV is not unexplained.


    Indeed, British experts in CFS - claim that ''Abnormal Physical Signs should not be compatible with a diagnosis of CFS''. Source: Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management Sharpe M. Wessely S et al Gen Hosp Psychiatry 1997:19:3:185-199

    Very recently, Professor Peter White who runs the St Barts CFS team in London - stated that if people with XMRV have Cancer - then people cannot have CFS.

    Source: http://www.bartscfsme.org/Documents...leukemia virus-related virus XMRV and CFS.pdf


    You guys do realise..............

    A drunk, an anorexic, a work-a-holic, an insomniac, a neurotic, a post menopausal teacher, a drug addict - can all have a diagnosis of CFS

    Not because this means anyone cannot get CFS, but because the above people's symptoms are classified AS CFS!!!!!!!. It's critical people understand this. This is how 'Nurse Lead' therapy by the CDC plans to 'Cure' people over the phone who have CFS by TALKING TO THEM. I am not joking.

    They are doing this in the UK up until 2012. This what your tax payers money goes to. Why carry on with a dustbin diagnosis? CFS is DENIAL by the CDC you have a serious immune disease (pathalogical abnormailty) in your body. This, historically is what the name was based on. A group of American GP's and Psychiatrists invented (created the mirage) of 'CFS'. This was exported from the USA from Reeves back to the UK by Simon Wessely.

    CFS = Long term tiredness. according to British NHS in 2009.
    CFS = 'No Specific Symptoms' (Oxford CFS Criteria).

    ALL diseases have specific symptoms - we all know this.

    XAND is very specific and a disease process, hence the WPI coined it
    and are developing a blood test for it. :cool:

    Would newly diagnosed AIDS, Lupus, MS, Parkinson's patients be up in arms saying - Nooooooo we have CFS and it must be taken seriously?
    I think not. Is CFS became Parkinson's - then Parkinson's is Parkinson's. Bye Bye CFS.

    CFS is dead - infact it was still born. CFS never existed it never lived.
    You (and me) were all lied to, tricked, conned and in some cases killed by the CDC by the ridiculous label CFS.

    Let those with unexplained chronic tiredness have CFS
    Let the mentally ill have CFS.

    I never had it, I don't want it.
    I will have XAND or something else.

    Infact my Diagnosis before XMRV is:

    1) Post Infective Syndrome (what ever that is)
    2) Post Viral Fatigue Syndrome (Obvious what that is).
    3) ME (Myalgic Encephalomyelitis) (ME - a disease of the brain).
    4) Dysautonomia/POTS and Vaso Vagal Syncope.

    Dysautonomia POTS is physical disease proven on a test. CFS is not.
    Even if I don't have XMRV, I have Dysautonomia - this is controlled
    by the CNS, not through illness beliefes corrected with CBT/GE/Pacing as CFS is. Many people with CFS recover through mental illness 'therapy'.

    Just because a Psychiatrist wants to kill me by telling me I have CFS, doesn't mean I should play ball or anyone else.

    CFS kills people - by the label.
    I repeat. CFS is an N-Word
    Don't use it.
  6. dannybex

    dannybex Senior Member

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    And with respect back to you :) I certainly agree that CFS or Chronic Fatigue Syndrome is an unfortunate and damaging 'name', and that many doctors (and friends/family) may equate it with 'chronic tiredness', but I and many patients -- and some of our doctors, even our friends, etc. -- do not. I hate the name, but I try not to let the label suck what little energy I have...I've allowed that to happen for too many years. If it has to start with a "CF", I always preferred the name CFIDS, or even better, CIDD (Chronic Immune Dysfunction Disease)...but CFS is the name that's very ingrained here in the US, [and I doubt it will change in the next few years, maybe even longer, so I try not to dwell on it. 'Syndrome' is unfortunate...disease of course is preferable, and even if the XMRV link for some odd reason falls completely apart (which I doubt) -- we've gotten so much attention from the news, that attitudes are changing already, even though the name remains the same.

    I've never heard of that 'No for 3 days' cure, thank god. :)

    All I can do is speak for my own case, and perhaps that of friends in my support group, but for those of us here, again in the US, the situation you describe has never happened. In fact, it often takes years to get a diagnosis of CFS, and when given, it's given with great reluctance and/or frustration on the part of the doctor. I've never heard of anyone just walking in and getting an official diagnosis -- given a diagnostic code -- of CFS without any tests or blood work being done. If that's happening in the UK, then that's truly scary...and grounds for malpractice.


    Yes, our government agencies have basically done diddlysquat, but I politely disagree that having a diagnosis of 'CFS' means nothing, etc., or that if one doesn't have XMRV, that they've been misdiagnosed.

    Who has made this medical "classification"? And who has been able to decisively explain XMRV? Even Mikovits and Peterson have offered conflicting explanations. (Mikovits strongly suggesting it's causal, with Peterson saying he thinks the immune problems may come first.)

    Perhaps it's happening in the UK, but I have never heard of a case here where an alcoholic or anorexic or a drug addict (for example) has been officially diagnosed with CFS, rather than being put in treatment for alcoholism or anorexia or drug abuse, etc., at least in the US. Again, it often takes years to get a diagnosis of CFS.

    As for talking to people over the phone to cure their -- whatever -- that's of course a ridiculous proposal, and I seriously doubt it would be officially approved. Especially with the recent news...



    I don't think anyone 'wants' to kill you, but I certainly understand what you're saying and your anger. The term CFS (or the many variations) has been very damaging, it isn't taken seriously by most, and in many cases that has brought about neglect, resulting in death, or ridicule or both, resulting in suicide.

    Nevertheless, that's the name that's used here in the US, and I for one, won't let that name or label kill me. I refuse to give it or anyone who denigrates us that power.

    Sorry for the long reply. We'll all probably have to agree to disagree on many of these issues, but with genuine respect and understanding.

    Best regards,

    Dan
  7. caledonia

    caledonia

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    I'm with Dannybex.
  8. dannybex

    dannybex Senior Member

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    And calling it "Reeves Disease" is better? :confused:

    Seems pretty insulting to me, but I'm probably misinterpreting what you're saying...

    d.
  9. Alice Band

    Alice Band PWME - ME by Ramsay

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    In the UK we have endless argument on CFS vs ME. Some argue that it is the same disease, some different .... some more serious etc etc.

    I think we may have a similar situation here. It's too soon to tell which groups will test positive and which negative (i.e. subtypes of CFS or ME, or whatever).

    People who test positive for XMRV is no more "worthy" than those who don't.

    Could we not agree that these different groups may be different but equal?

    I for one, do not want to see anyone go through what I've been through. The lack of research, the lack of real care, the sneering and the abuse.

    As everyone is tested the most vulnerable group in many ways, may be the people who test negative, who have no clear understanding of their disease and maybe, no hope.

    We must care for this group.
  10. cfs since 1998

    cfs since 1998 *****

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    I have to respectfully but firmly disagree with Mary Schweitzer and those that share her line of thinking. I think it only hurts our case to go around and saying, "XMRV is not CFS." To do that would we would be agreeing with Reeves, Wessely, White, et. al.

    CFS was a name given by the US government to an outbreak of an uknown disease in Lake Tahoe in the mid 1980s. If it is proven that XMRV caused said disease, then at that point, the name CFS will become an obsolete name for XAND (XMRV Associated Nueroimmune Disease), and CFS as a diagnosis will cease to exist. If there are people with CFS-like symptoms who do not have XMRV, then a new illness entity and criteria would have to be created for them.
  11. condra

    condra

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    As I've always seen it, CFS is an umbrella term for ME, fibromyalgia, unexplained chronic fatigue, and some other conditions. (now including XAND perhaps)

    I've never liked the term CFS, though I sometimes use it to describe myself to lay people who have never heard of ME.

    I imagine if it turns out that a majority of ME/CFS patients have XMRV/XAND as the main cause of their symptoms, they will vote with their own voices and completely drop the CFS and ME names, and stick with XMRV/XAND.

    I've no doubt that a small but significant proportion of CFS patients are hypochondriacs, depressed, misdiagnosed or whatever. While these people deserve respect, and need help, the prospect of being able to "weed them out" through new diagnostic testing, is intriguing.

    Indeed, if there are people suffering from chronic fatigue symptoms, for different reasons than others, surely it is in everyones interest to segregate and treat each group independently.
  12. caledonia

    caledonia

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    I'm not liking how this thread is going, mainly because I suspect that I'm going to be XMRV negative, yet I fulfill the criteria for the strictest definitions of CFS (such as the Canadian definition).

    I don't think it's going to be so black and white as you have XMRV/XAND or you have Reeves Disease, like Mary points out.

    There has to be some room for methylation problems, toxic chemicals, Lyme, toxic mold, etc.

    Now if it could be proven that XMRV causes methylation problems, that would be really interesting.
  13. Marylib

    Marylib Senior Member

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  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    When the WPI XMRV paper was first reported on in the media, confusion arose around the inclusion of lymphoma cases (vis Wall Street Journal).

    This led to some commentors - Lloyd, Shepherd, Wessely and others to question why these lymphoma cases had not been excluded from the cohort. In the document leaked to me that Peter White was circulating to CNCCs, White had seized on this too, with his letter quoting largely from the Lloyd commentary.

    WPI has since clarified that the lymphoma cases were a separate cohort to the cohort studied in the Science paper, that is, it was not the case that 20% of the 101 cohort studied had lymphomas.


    On Day One of the CFSAC meeting, as part of his slide presentation, Dan Peterson had run through figures for some of the other diseases/disorders that WPI had looked at separately. I scribbled down (and please do not quote these figures unless you have confirmed these, yourself, with the video):

    Fibromyalgia - 20, with 60% positive for XMRV
    Atypical MS - 3
    Autism - "small number" - 40%
    GWS - not tested


    I didn't catch any figure for the lymphoma study but I haven't yet been able to view the afternoon session of Day One or any of Day Two of the CFSAC meeting.

    Question: Has it been clarified how large that separate lymphoma study group was or how it was assembled? Is it 20% of 5, 10, 50? And where had the samples come from - one locality or several?

    I'm not looking for flaws in methodology, here, I just want to be able to understand more about the lymphoma cases.

    (If this has already been discussed under another thread perhaps someone could direct me to it.)
  15. zero

    zero Guest

    I agree with condra - CFS is a wastebasket diagnosis. XMRV/XAND refer to something specific.
  16. fresh_eyes

    fresh_eyes happy to be here

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    I agree with those who've said that there's got to more to this than XAND vs. Reeves' Disease. Having an unexplained illness has made me much less inclined to dismiss anyone else who reports feeling ill; while things like hypochondria and somatiform disorders surely exist, I lean towards believing that most people in even the broadest CFS definition probably have legitimate biological illnesses. Surely XMRV isn't the last work in retroviruses, and the future probably holds the discovery of XMRV 2, XMRV 3, etc. and who knows what else. I don't want to abandon anybody in the land of "it's all in your head".
  17. Robin

    Robin Guest

    cancer group

    From Cort's write up of the IACFS/ME conference last March:

    I'm not sure if lymphoma cases were tested for XMRV (but why wouldn't they be?), or if an incidence lymphoma has observed in CFS by other physicians than Dr. Peterson.

    Incidentally my uncle has mantle cell lymphoma. :( It's very aggressive, incurable and difficult to treat. He went through stem cell treatment last summer which was successful (for now) but claims he's not sure he could do it again if the lymphoma resurges. Mantle cell usually strikes men in their later years. I'm curious if Dr. Peterson's 3 mantle cell patients 1) were men 2) were older.
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Robin, I'm sorry that your uncle is having to live with this and I hope that he remains well.

    Judy M has clarified that the lymphoma group were a separate group to the Science study group and also that none of the 101 group had lymphomas.

    In the absence of a clearer picture about the "20%" lymphoma group, it might be assumed that the data has come entirely from Dan Peterson or from Dan Peterson plus samples from elsewhere.

    20% is a very significant figure.

    Are no other "CFS" and ME clinicians in the US reporting lymphomas or significant incidence of other cancers in their own patients?

    I know that Byron Hyde was at one time (and may still be) reporting that he had noted significant levels of thyroid cancers amongst his patients (though I have never seen him quote actual figures).

    If you are going to get a cancer then thyroid cancer is one of the easier ones to successfully treat. I don't know whether Hyde has ever reported on the outcomes of his ME patients who had had thyroid cancers identified and had undergone treatment for them. Did they, for example, fare as well as the otherwise well population does following treatment for thyroid cancer? Were there gender differences in incidence of thyroid cancer amongst his patients?

    Are there gender differences in this "20%" lymphoma group?

    I have a 23 year old son who has been ill since he was 12 and it is a concern.

    There are anecdotal reports, in the UK, of a higher incidence of cancers amongst ME patients but no studies have been carried out. We are told in the UK that at some point in our lives 33% of us can expect to develop some form of cancer.

    Hopefully more information about the "20% lymphoma group" will emerge in time.
  19. srmny

    srmny

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    Lymphoma

    Hi,

    I think we will find that most of us have the retrovirus. I rarely read a post where I think the symptoms discussed are unlike symptoms I have or had in the past. Recently I read a discussion that sounded completely different than my illness but then I remembered that at the very beginning of my illness it might have been an accurate description. Between the way this illness moves around the body, changes in severity and sometimes even backs off, we are not all on the same page most of the time. Add to that the difficulty many of us have or have had with output versus input, changing IQ and dementia like memory, it is surprising we still manage to recognize a fellow PWC.

    I know that when I am tested every year for all the CFS culprits ( HHV6/ HHV7/ EBV/ NK cells etc.) the results reflect how I am feeling at the time of the test. I have found that when the levels of virus are high I am feeling bad and the NK cells are also low. I expect XMRV will behave similarly. If I am in a "remission" I would expect to see only minimal XMRV antibodies but I will assume that the next check up (the following year) it might be active. Perhaps the people who have struggled for a diagnosis and never had any CFS type lab work are worrying unnecessarily. When my annual CFS blood work shows little sign of virus and my NK cells have gone from 3 up to 17, my doctor has never suggested I am well. I once got confused by it but not her.

    I also would add that we have known for a long time that NHL (lymphoma) was a cousin of sorts to this illness. Dr. Peterson verified it when I asked him at the CFSAC meeting. Not mantle cell necessarily but generic NHL. My husband came down with it about 5 years before I got sick. He does not have CFS and I do not have NHL but at my house we have always assumed each gave it to the other and no one blames anyone. Up until I asked Dr. Peterson every other doctor I asked about it looked at me like I was truly nuts.

    srmny
  20. camas

    camas Senior Member

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    Lymphoma in my family too

    Susan,

    I just wanted to thank you for posting about the CFS and NHL in your family and for reporting what Dr. Peterson said about NHL in general.

    I've had CFS for a couple of decades and lost my 49-year-old husband to a rare follicular mutated to Burkitt's lymphoma several years ago.

    I always felt there was a connection between our illnesses because he'd shown mild signs of CFS for a long time. I'd never discussed my theory with my doctor until the news of XMRV. He did his best to console me and agreed to let me go ahead with the XMRV testing.

    Wishing you and your husband the best.

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