• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

XMRV in the Blood Supply? - WPI to begin testing


Senior Member
Clay, Alabama

I just love all this speculation. It is mentally stimulating.

Osler's Web gives the account of the teachers at Truckee. Now, unless they were having affairs, there must have been a transmission between them that is not sexual. Now, the symphony in No. Ca. or the Pan Am flight attendants, you could see where sexual transmission would have been a possible explanation for much of it. (Hillary said that some symphony players were having affairs. As for flight attendants and pilots, well, I won't say anything.)

But I don't know about the teachers. I find it unlikely that the teachers in the same break room were having affairs with each other.

I have CFS and so does my sister. She believes she has had something wrong with her since birth. I know I have had the vasovagal hypotension, which is associated with CFS, since I was five. But I didn't get sick until I was 40. I had some symptoms before that, minor, nothing I went to the doctor about. But at 40, symptoms started that showed something was wrong.

My other sister is bi-polar and has narcolepsy and endometriosis.

My mom has had gall bladder surgery, breast cancer at a young age (late 40s). Dad has diabetes, high cholesterol and high blood pressure. Although his diabetes is kept under control, he says he can't sit down to read something without following asleep within four paragraphs. And this is all the time. He stays on top of his blood sugar religiously.

My grandmother on my mom's side had breast cancer later in life (70s) and has vertigo they can't find out why. And she has fatigue.

My grandfather on my mom's side likely had misdiagnosed bi-polar disorder. He was an alcoholic.

Two of my four cousins on my mom's side have depression. (although, could it be misdiagnosed CFS?)

I suspect, many in my family, especially on my mom's side, have XMRV. And some of these health problems can be explained by the XMRV, even those that didn't get CFS or depression.

So I am not convinced that it is not passed on through the genes, since it inserts itself into the DNA of host cells. I don't know if it is in the sperm or egg cell. Tests will show this, I guess in time.



Senior Member
Clay, Alabama

There is some evidence that XMRV came from Africa. The Burkitt's lymphoma that is seemingly more common in people with CFS, or their relatives including sexual partners, is much more common in Africa. It is considered very rare here, but is seen more in the CFSers and relatives.

Hillary gives an account of a woman from South Africa who had chronic mono symptoms for years, coming to visit relatives in U.S. in four different states. Within a year, four of these family members got sick with lymphomas. Others in the family got CFS.

One of the members of that family thought she might have caused the Lake Tahoe outbreak.

Now, I can't help but think of HIV with all of this. It is similar.



Senior Member
Several years ago, one of my I.D. Drs. drew blood for some "experiments". I "heard" that this was in conjunction with a major study (thought it was taking place in Edinburgh..but not sure) involving Gene Expression and Microarray in ME/CFS.

I just found the study details on-line(very interesting). I can't remember how to give links and so forth. I googled "CFS Research Foundation"...then clicked on the first hit -"Research Committee" PDF file....and it's a newsletter with info re: the study.

I've been kind of embarrassed to ask if my blood was used for this. I have a feeling it was not.:(

This is an interesting UK study...but I still haven't worked my way through the info yet!:confused:. Check it out!:)



I can't remember how to give links and so forth. I googled "CFS Research Foundation"...then clicked on the first hit -"Research Committee" PDF file....and it's a newsletter with info re: the study.

Here's the paper that Jackie mentioned:

Gene Expression Subtypes in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (first paper cited)

Subject enrollment, clinical characterization, and blood
sampling. Twenty-five patients with CFS/ME from the Dorset
CFS Service in southeast England were enrolled for the microarray
study. Patients with CFS/ME whose blood was used for subsequent
PCR studies comprised those in the microarray study along with an
additional 30 patients from clinics in 3 UnitedKingdomcities (Dorset,
Bristol, and London; 1 patient from Leicester was under the care
of a clinic in London) and New York, New York.

Jackie, you could have been one of those 30 patients. Did you see that they thanked you at the end?

We thank Anne Faulkner and the CFS Research Foundation...
and all the patients with CFS/ME and blood donors for their participation.

Alice Band

PWME - ME by Ramsay

Do you remember all the other written tests at the time of the blood draw? There was a pain one and a few others?


Senior Member
Near St Louis, MO
Cold Taste

You asked
Are there swathes of Taliban in Afghanistan with Parkinson's, ME CFS, Autism, Gulf War Syndrome?

The answer concerning the Taliban is and will remain for the time being unknowable, but ALL these diseases exist in Iraq, together with an increase in childhood leukemia and other neurological and immune problems, and all occurring since the Gulf War. Uranium-tipped weapons have long-since been thought to be the culprit. We left one bloody awful mess behind after the Gulf War.

For a while, we wondered if the fact that we lived near - and my husband worked at - the main transit base for troops and ordinance en route through Germany to the Gulf had somehow affected me as I fell sick shortly afterwards. And our proximity to US military installations once we returned to England increased our suspicion, especially since there was quite a cluster within about 25 miles of these US bases.
Sofa, UK
One thing that's struck me today is the way that XMRV revisits old controversies and resolves them in less contentious and more plausible ways.

To mention that lots of people got sick in and around the Gulf, and in and around certain labs or military installations, used to have a political slant: theories about GWS used to immediately have a cloud of smoke around them for everyone because everywhere was the hint, suggestion or fear of a military explanation. But a previously-unknown retrovirus spreading through the area, requiring the accepted factors of chemical and psychological stress as co-factors, in a way explains how both sides of the controversy were right. The chemical and psychological stress were not a sufficient explanation on their own.

XMRV just looks like the missing piece in so many puzzles. I was reading Wikipedia on Multiple Sclerosis the other day, fascinating parallels and another ideopathic condition, feeling of an endogenous equivalent to XMRV, with the addition of an unexplained rapid rise in prevalence since the 80s, lots about B cell and T cell abnormalities.

X looks so much like the answer to so many questions (although those questions still aren't being asked scientifically, where are the tests for XMRV and MS, XMRV and GWS?), that the only reason I can come up with for doubting X is that it all sounds too good to be true.


Riverside, CA, USA
i also received 2 units of blood after delivering my 3rd child in 1980. i became ill with CFS in 1993. i am very concerned about the probability that i passed CFS on to my daughter, now 29, when i nursed her as an infant, and that she is now passing it on to her baby whom she is nursing. my daughter doesn't show symptoms, but then i may have carried the virus 12 years before symptoms became evident.

i haven't told my daughter of this possibility. i am torn. i don't want to worry her needlessly yet, because she plans to have more children, she needs to know so that she can decide if she wants to be tested. she is already a worrier. i would appreciate any insights any of you have...and especially from those who are young adults.

i haven't been tested yet, but am considering doing so soon. i'm not sure what concerns me more: that i have XAND or that i do not. if i don't...i have no idea where to turn for help. i don't really see a reason to wait to be tested, since it seems doubtful the CDC is going to move any time soon regarding XMRV, and i don't believe any insurance will cover treatment, when it's developed, until the CDC embraces it.

thanks for listening!