Once again people are confusing the retrovirus XMRC with CFS - and forgetting all about XAND (or XMRV Associated Neuroimmune Disease), We have to keep them clear as we talk to outsiders, if we are ever going to escape over 20 years of a pathetic and useless name and concept, Chronic Fatigue Syndrome.
** XMRV is not CFS **
XMRV is not CFS - it can't be CFS. It can't be CFS because CFS means too many different things in the realms of medicine, research, and popular culture.
Example:
According to British psychiatrist Peter White, CFS is a condition of UNEXPLAINED SYMPTOMS that results from "inappropriate illness beliefs." It is best treated with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). And this is pretty much the version of CFS that has been adopted by Britains National Health Services - and the "NICE" Guidelines.
XMRV isn't a symptom. Perhaps the symptoms of XMRV are identical to White's version of CFS, but then they wouldn't be medically unexplained any more.
So, by definition, XMRV cannot just be "CFS" - because there are definitions of CFS that preclude the possibility of being caused by a virus. Any time you hear someone like White, or Simon Wessely, or Trudy Chalder, express an opinion about the "validity" of XMRV with regard to "CFS", they cannot possibly have anything professional to say about it.
In the U.S., CFS began life as "chronic Epstein-Barr virus." Now, CEBV could be the result of a retrovirus, because retroviruses mess with your immune system.
But when they CREATED the term "Chronic Fatigue Syndrome," according to the article co-authored by Ian Holmes in 1988 that was the first of three CDC definitions, they explicitly stated that CFS was NOT the same thing as CEBV.
It was not chronic mono. It was chronic fatigue.
Over the years, there have been more research definitions for CFS, plus the definition hidden within the questionnaires the CDC currently uses to diagnose CFS (sometimes called the Reeves or empiric definition).
I, for one, would not have CFS according to Reeves' questionnaires.
And I'd bet the bank that there are many people in Georgia who have been diagnosed using those questionnaires in Reeves' and Emory U's psych dept's clinics - who don't have XMRV.
But I have a natural killer cell function of 2%, evidence of Rnase-L abnormality, active cytomegalovirus, HHV-6, HHV-7, and chronically recurring EBV.
I think I have a pretty good chance of having XMRV.
AND YET - Even if I were to be tested for XMRV to somehow justify "my" definition of CFS as the "right" one - I'd again be mistaken.
**XMRV is a retrovirus**
Viruses fall into classifications. Polio is an enterovirus, and Melvin Ramsay, the co-discoverwr of M.E., always believed it to be an enterovirus. Epstein-Barr (mono or glandular fever) and cytomegalovirus (CMV) are herpes viruses - like Human Herpesvirus 6, or HHV-6. XMRV is a retrovirus.
XMRV is one of only THREE retroviruses known to be active in humans: HIV, HTLV1, and XMRV.
(Which is why this is such a profound discovery.)
The only really good model we have for human retroviruses is HIV. But HIV isn't really what people are after when they get tested, is it?
No. HIV is important because it either causes, or is so close to the cause as to be indistinguishable for practical purposes, AIDS.
** XAND is to XMRV as AIDS is to HIV **
So what is our "AIDS"?
Is it CFS? No. Why not? Well, among other things, about 1/5 (if I have that right) of prostate cancer victims have XMRV. But they do not have CFS.
Let's go back and look at the HIV/AIDS model again.
HIV by itself is not AIDS. You have to have one of many defining diseases to be diagnosed with AIDS.
For example:
HIV + Karposi's sarcoma = AIDS
HIV + pneumocystic pneumonia = AIDS
** XAND **
The disease we are going to be diagnosing with XMRV is not CFS. It is XAND:
XMRV Associated Neuro-immune Disease. XAND
What is XAND?
XMRV + natural killer cell dysfunction = XAND
XMRV + active HHV-6 = XAND
XMRV + active CMV = XAND
XMRV + T-cell abnormalies = XAND
The DISEASE that XMRV will HELP in diagnosing is XAND.
** Myalgic Encephalomyelitis **
Where does this fit in with M.E., or Myalgic Encephalomyelitis?
Unlike CFS, M.E. is a disease, a disease that has been diagnosed for half a century and coded under neurological diseases in ICD-10, the World Health Organization's current International Classification of Diseases - and it has been there for FORTY YEARS.
It would be a well-established disease, but in direct contradiction to the origional Holmes definition of CFS (and all other CDC definitions of CFS), British psychiatrists and individual researchers such as Stephen Straus linked M.E. To CFS, CFS to neurasthenia, anxiety disorders, somaticizing, and/or a constitutional inability to handle stress (currently hypothesized by CDC's William Reeves as caused by childhood traumas, or post-traumatic stress disorder [PTSD]).
** PTSD and XAND **
A constotutional inability to deal with stress, perhaps brought on by childhood abuse, has NOTHING to do with XMRV or XAND - unless Reeves could prove that:
XMRV + PTSD = (??) XAND
Indeed, when Reeves talks about not being able to replicate XMRV within his own cohort of "CFS" patients, he is (I think without realizing it) actually saying that
XMRV + PTSD does NOT equal XAND
So let's just repeat that: if Reeves is correct,
XMRV + PTSD do NOT equal XAND
** M.E. and XAND **
There are three theoretical possibilities for M.E. and XAND
1. Perhaps M.E. is XAND. That does not seem likely, because M.E. was identified in the 1950s.
2. Perhaps XMRV + ME = XAND.
3. Perhaps there were simultaneous outbreaks of XAND, M.E., and AIDS in the 1980s. Interesting thought. Or perhaps there is some other relationship. Who knows yet?
Whatever the answer, I think the discovery of XMRV and XAND will lead to a better understanding that "CFS" - the thing created by CDC to coverup hundreds of outbreaks of disease across the U.S. beginning in the 1980s - is not a disease.
XMRV, a retrovirus, is not "CFS".
XAND, the neuroimmune disease associated with XMRV, is not "CFS".
** There are many people with a diagnosis of CFS who do not have XMRV **
This will be the hardest lesson. There are many people who have a diagnosis of CFS who will turn out to have neither XMRV or XAND.
With a misunderstanding at its foundation (that this was an illness about "fatigue"), and with NO federal research dollars put towards understanding this condition in the 25 years (at least) it has been here, what other diseasea are hidden just below the surface, needing a diagnosis?
If you do not think you have XAND, perhaps this is not the time to be tested for XMRV. And if you are tested, and found negative, do not be discouraged. Hopefully the research now begun will continue and branch out.
Above all, we cannot allow ourselves, as a patient community, to be divided. More than ever before, we must support each other, whatever specific disease we may have.
The practice of disguising serious biological diseases as psychosocial illnesses - mainly to save money - MUST COME TO AN END.
A great step has finally been taken - but as we move forward into understanding XMRV and XAND, we must insist that research into these and as-yet-undiscovered diseases continue.
Mary M. Schweitzer, Ph.D.
What other diseases out there have been misdiagnosed as "CFS" for twenty years because our governments refused to spend money on research.
Congratulations to the Whittemore-Peterson Institute, the Cleveland Clinic, and their coworkers at the National Cancer Institute. What else could we learn by funding studies into biological markers. Immune and endocrine disorders
Sent from my Verizon Wireless BlackBerry
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