Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a debilitating condition that makes day-to-day life difficult for those who have it. Join the group and discuss treatment, symptoms, and lifestyle changes that have helped.

3 Online

"Retrovirus Reaction"

Dr. Judy Mikovits stirs up controversy in neuroimmune disease community
By Leilani Clark (in her opinion)

"If you've been sick for 10 years, 20 years, 30 years, and you've been to all kind of doctors and you can't seem to get well, these people are desperate to find what might be the key to helping them," says Tom Klaber. "For some of them, XMRV could be just the thing."
Klaber, a principal at Santa Rosa consulting company Bridge Medicine & Health, has been instrumental in bringing Dr. Judy Mikovits to Sonoma County. Mikovits is the lead author of a 2009 paper published in Science Magazine showing that more than 70 percent of patients diagnosed with chronic fatigue syndrome also tested positive for XMRV, a human retrovirus discovered in 2006. One of only three known retroviruses (HIV being another), the discovery may hold the key to unlocking the mysteries of many illnesses, including prostrate cancer, fatigue, lymphoma, multiple sclerosis and autism.
Like medical theatrics straight out of a Michael Crichton novel, certain groups have challenged Mikovits' claim that strong associations can be made between XMRV and cancer or other neuroimmune diseases. A study in England purported to find none of the retrovirus in blood samples, a claim later discredited when it was revealed that the researchers had used an entirely different method of testing from the original.
"[Mikovit's paper] really upset a lot of apple carts," says Klaber. "There were people with cherished beliefs about the cause of chronic fatigue were not happy. Ego, greed, prestige and power is as rampant in academia as anywhere else."
Klaber encourages anyone suffering from chronic or debilitating illness to attend the public talk. "Significant numbers of people have chronic illness and just can't feel happy," he says. "XMRV is obviously playing a role for many of these people."
Find out more about XMRV when Dr. Judy Mikovits speaks on Monday, Jan. 17, at the Friedman Center. 4676 Mayette Ave. 2pm. Free. 707.396.5835.

Available at;

End Article
From observation Dr. Judy Mikovits isnt intentionally stiring up controversy in neuroimmune disease community, she's just telling it as it is beccause she knows a bit more about the 'main contributor' factor than most. Its the others that are beating up the controversy because she is forcing them to adapt because WPI are leading in the main contributor' research so it necesitates change on the 'old order dont like change'.
Its just normal stuff. Thing is from everything I read and understand, been tested for, and have been told by her Associate Peers, 'Old CFS constab will have to change and get with the times or they will be redundant.
Whitmore PI's and Mikovits's logic and methods are real, the science is good. It stacks up. Paper on the first 6 using her new treatment has just been published.
More and more labs are finding if you use WPI's IIPP"s method they find MLV's and XMRV's in 70 % of CFS patients.




I agree, Al. The paper in Science really ruffled a lot of feathers, so there's bound to be a lot of squawking. When the dust settles, I think there will be some big roosters that will retire early or just fade away. More papers will be published, this story isn't over yet.

Take note that no one has claimed a linkage between XMRV and ME/CFS. That has yet to be proven or disproven, but I think we will be there soon. I was really impressed when I read that research has shown that XMRV attacks human immune cells in lab cultures.

Thanks Al for posting this information. I needed a little hope for this year being a year that will help us. I have been dx for about 4 years now but it seems like a lot longer. It would a blessing for all of us that suffer to finally be able to lead a normal life again.

Thank You Al. I've done alot of reading on this and it just fits alot of my health problems.

It was way past time someone shook things up. It's the only way we're going to get any help.

It all comes down to money & politics the old group is going to start losing what they see as there share of the money and they don't like that.

Thanks Al!! Our research Guru!!!!

One of these days, it's gonna happen....we're gonna get some help!! We're going to be validated by scientific data, and be able to move ahead with some hope and dignity!

Thanks, Al.

Al, Thank you so much for posting this. I think the comment about "ego, greed, prestige, and power" is a very important factor to remember. I sometimes forget that. It's just that I'm so sick and suffering, and yet there are those who work against helping.Thanks for keeping us informed, up to date and helping us to understand some of the complexity of this research world. I appreciate you.

Well, well well. I was privileged to hear this talk yesterday.
Did I ever learn alot. Three hours of lecture and Q@A. With
all due respects to Richie, it appeared to me, that there is a
direct link between XMRV and CFS. They said there is an even
higher correlation with people with Lyme. Like 100%. I believe
the findings iwth CFS was as high as 98% in some testing. I
always want to add a disclaimer, that I could be wrong about
science when I state it, but I don't believe they said the retrovirus
caused CFS, but that it was present in a large population of
people who had it. These are diffinitely ground breaking
findings. They also did studies among families and found
that in alot of instances the virus was transmitted onto family
members. They didn't say how. They know it lives in the blood
and tissues. They have placed restrictions on who can donate blood because of their findings.
Ok. They also advised writing to our federal
and local congress
people to encourage more research. To tell our stories and
say that more funding is needed. The exact posts have not
as yet been put on the Whittmore Peterson website
( ) but it is my understanding that some of
the info to write letters will be put up soon. More funding is
needed to work on treatments. Sadly, some of the funding
that was intended for this research has been cut. Judith
suggested a good place for it to go would be the NIAD The
National Institue of allergies and disease.
Let us hope that all this good work moves forward in
the coming year. That more and more researchers are
allowed to unravel this daunting illness.

Thanks Al and also Rosa for the update.

Best wishes.

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