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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Media Links - no discussion


Senior Member
Media Links - no discussion

XMRV and ME/CFS A stunning find

"What has caught the attention of the scientific world is that these observations seem to fit neatly, at least at a first glance, with what is already known about ME/CFS as a chronic illness. For example, viruses related to XMRV have been reported to be involved in damage to blood vessels and nerves, and natural killer cells (historically low in ME/CFS) are said to be susceptible to infection by XMRV. Also, the fact that retroviruses like XMRV are known to be able to activate some other (latent) viruses might explain why ME/CFS has been associated with a range of different viral triggers, such as herpesviruses like Epstein-Barr, over the years. Again, as Dr Judy Mikovits and colleagues point out in their paper, some of the most commonly reported features of ME/CFS include neurological symptoms and immune dysfunction with inflammatory cytokine and chemokine upregulation, and some of these observations could be accounted for by infectious XMRV in lymphocytes."


Senior Member
UPDATE: Ampligen for Chronic Fatigue Syndrome

"This isn't the news we've been hoping for, but at least now we know: approval is not coming this fall, as Carter had previously said.

In related news, Carter says Hemispherx is collaborating with the Whittemore Peterson Institute, which recently announced the discovery of a retroviral link in chronic fatigue syndrome, to see if Ampligen could be an effective treatment for XMRV."


Senior Member
Eight-Country European ME Alliance Issues Kudos to WP Institute, Pledges Cooperation

ME Alliance Press Release Oct 16:

The European ME Alliance (EMEA) wish to congratulate the Whittemore- Peterson Institute for the painstaking, professional and groundbreaking work which its staff have performed, along with the National Cancer Institute and the Cleveland Clinic, which has resulted in the publication of the findings of a novel virus XMRV in causing or influencing ME.

The members of EMEA recognize that the staff at WPI are performing research of the highest quality.

The publication of this research in Science magazine is itself an amazing achievement.

This work has been achieved in an amazingly short period of time and the tenacity, dedication and sheer excellence of the WPI has brought hope to millions of people, patients, carers and friends, in Europe and further afield.

EMEA announces its continued full support for WPI and hopes to be able to become a stronger partner in the future.

Signed by all members of the European ME Alliance:
Belgium - ME/CFS Association (Nieuwrode, Belgium)
Denmark - ME-NetDK
Ireland - Irish ME Trust
Germany - Fatigatio e.V.
Norway - Norges ME-forening
Spain - Liga SFC
Sweden - Riksfreningen fr ME-patienter
UK - Invest in ME

The European ME Alliance


Senior Member
Chronic fatigue breakthrough?

"Twenty-five years after an Incline Village outbreak, there are reports of a breakthrough in dealing with chronic fatigue syndrome (CFS).

In August 1984, two physicians at Incline Village, Paul Cheney and Daniel Peterson, were flooded by seriously ill patients describing mononucleosis- or flu-like symptoms. Soon the Centers for Disease Control were in Incline drawing blood samples, but local community leaders were upset by the publicity, fearful of the damage it could do to tourism.

There seemed to be a cut off point, Incline resident Erik Johnson later wrote. If people recovered within two weeks, they seemed to have beaten it. But if this weird flu went on for longer, for three weeks or more, the illness seemed to actually get worse. We had never heard of anything like this. Thats not how any normal flu acts. It scared us all to death.



nasty UK newspaper article from a doctor who writes anonymously:

'Dr Crippen: the ME debate

Despite recent research, doctors continue to be sceptical about ME

The militant wing of the Myalgic Encephalomyelitis (ME) brigade broke out the champagne when a recent article in Science reported that a retrovirus had been found in 67% of ME patients compared to under 4% of the general population. Sadly, the study only involved just over 100 patients and is thus inconclusive.

ME is surrounded by a sad potpourri of cod-science, misunderstanding, prejudice, anger, denial and indifference. Both doctors and patients are to blame. Doctors are victims of their rigid training. If the history, examination and tests do not produce a diagnosis, the doctor's wiring starts to overheat and there can be only one conclusion. The patient must be mad. "Mad" is a diagnosis. The doctor sighs with relief. The patient cannot win.

Some people with ME are even more blinkered than the medical professionals. Patients with chronic illnesses such as cancer or heart disease sometimes get depressed and are helped by psychiatric treatment. You cannot suggest this to a militant ME sufferer.

"Myalgic encephalomyelitis" literally means "painful muscles" and "inflammation of the lining of brain tissue". Two scientific concepts irrationally conjoined to provide fertile ground for quacks and malingerers.

Doctors continue to be sceptical, their scepticism buttressed by the many who march under the ME banner but who have nothing wrong with them other than an inability to cope with life.

Some ME patients are mentally ill, I have no doubt. Some ME patients are not mentally ill. Of that I have no doubt either. When you have filtered out the malingerers and the mentally ill no easy task you are left with a group of people who are suffering from a chronic illness. Many of them are not receiving the help they so desperately need.

Dr Crippen is the pseudonym for a long-serving GP.'

you can write to the paper here:



Senior Member
From Jody, member on this forum
Musings on Retrovirus XMRV and Chronic Fatigue Syndrome

"Worrisome thought. If XMRV is the cause of CFS ... what if they can't cure it? Are we doomed to carrying a life-long virus that stirs the pot every once in awhile, causing life-stopping relapses?"

"Just a few of the thoughts that have caused many a CFS relapse and crash last week. Other stalwarts with CFS wrote letters, made appointments, posted online comments and wrote articles. Then, many of them were also levelled by their symptoms from the duress of responding, and they are now flat on their faces once more. Hoping that one more time they will regenerate and be able to get up, to face -- again -- an unknown future."




Senior Member
CCFS Advisory Committee Meeting - Will be Webcast Live

CFS Advisory Committee Meeting - Will be Webcast Live

HHS has posted an agenda for the CFSAC meeting in Washington DC, next Thursday & Friday, Oct 29 & 30, 2009. Detail is sparse, but many suggest this event may mark a new chapter in ME/CFS research, and the world is invited to watch it all, live.

To Access and Print the Agenda LINK

The Event Will be Videocast Live on the Web
Starting at 9:00 Thursday EDT at LINK
For the time where you live, use the World Clock Time Zone Converter

To Prepare in Advance for Viewing the Archived Videos
*You will need to have RealPlayer installed, and you can download the latest version in advance at LINK
*You can test your computer and network connection at LINK

Topics Clearly Indicated in the Agenda
*Dr. Daniel Peterson, MD, from the Whittemore-Peterson Institute, will give a presentation starting at 10:15 am on Oct 29 on “XMRV Association with CFS.”
*Dr. David S. Bell, MD, will Speak on “CFS and FII/MBP” – the issue of suspected “fabricated and/or induced illness in children/Munchausen by Proxy” as it relates to ME/CFS - at 3:30 pm

See top link for entire entry


Senior Member
Hillary Johnson Op-Ed Ny Times

Op-Ed Contributor NY Times
A Case of Chronic Denial

"Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitass findings."

"When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.

My hypothesis was, This is a retrovirus, and I was going to use that repository to find it, Dr. Mikovits told me.

What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.

Its amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives, Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease."


Senior Member
Hillary Johnson Blog


"Something made stockholders start dumping UNUM shares at about 3 pm Tuesday afternoon. UNUM is the largest disability insurer in the world, with ties to the shrink lobby in the UK and a 20-year commitment to making sure no one with "chronic fatigue syndrome" recieves disability support.

Did any UNUM stockholders happen to read the Times op-ed today and notice the comment about the CDC's desire in 1987 to protect disability insurers from making "chronic disbursements"?

Did they look at that number--one million Americans sick with a devasting disease that may be about to be resolved by bona fide science? Did they read about the potential "dismantling" of the construct, "chronic fatigue syndrome" and the new name for the disease that afflicts people who are infected with an oncogenic retrovirus?"


NIH Research Matters

October 19th: Virus Linked to Chronic Fatigue Syndrome

Chronic fatigue syndrome, or CFS, is a debilitating disease that affects millions of people in the United States. It's characterized by profound fatigue that doesn't improve with bed rest and can be exacerbated or re-kindled by physical or mental activity. A number of other symptoms are also associated with CFS, including cognitive deficits, impaired sleep, myalgia, arthralgia, headache, gastrointestinal symptoms and tender lymph nodes...patients with CFS are known to have some abnormalities in their immune system.
This Week in Virology Podcast episodes discussing XMRV

I hope this is the correct place to post these:

TWiV 55: Mice lie, monkeys exaggerate
by Vincent Racaniello on October 25, 2009

Hosts: Vincent Racaniello, Dick Despommier, Alan Dove, Jason Rodriguez, and Rich Condit

The largest TWiV panel ever assembled takes on XMRV and chronic fatigue syndrome, 2009 chemistry Nobel prizes for ribosome structure, finding new poxvirus vaccine candidates, a brouhaha over leaked Canadian data on influenza susceptibility, and transmission of H1N1 influenza to a pet ferret.

*Note: the XMRV discussion starts at about minute 30:00

by Vincent Racaniello on September 20, 2009

Hosts: Vincent Racaniello and Jason Rodriguez

Vincent and Jason review influenza 2009 H1N1 vaccine trials and protection against the virus conferred by the 1976 swine flu vaccine, then move on to a virus called XMRV and its possible role in prostate cancer.

About This Week in Virology: "TWiV is a netcast about viruses hosted by two Columbia University Professors. Contact: twiv@twiv.tv or Skype twivpodcast "


Senior Member
ABCNews.com piece on CFS and XMRV

ABCNews.com piece on CFS and XMRV


here is the article:

Chronic Fatigue Patients: No Longer Fakes?
Virus Found in CFS Patients Might Explain Bone-Aching, Unrelenting Symptoms, Help Find Therapies

Oct. 30, 2009—

In 1982, Cynthia Toussaint, a 21-year-old North Hollywood, Calif., ballerina and actress, had a hamstring injury that wouldn't heal. Her leg pain was so severe, it was like "being doused with gasoline and lit on fire."

As her symptoms grew worse, the muscles spasms contracted her right arm and leg so tightly that her limbs "folded up."

Then came the fatigue -- so deep and persistent, Toussaint could barely lift her eyelids on awakening and often would fall out of a chair with sleepiness.

"I was bedridden for a decade and could barely crawl to go to the toilet," she told ABCNews.com. "They said it was in my head -- that I had stage fright or tendonitis from Mars. People said I was making it up."

Toussaint eventually got relief from what was diagnosed as complex regional pain syndrome, but what she believed was chronic fatigue syndrome persisted.

For years, she fought with doctors, her insurance company and other skeptics, who would not believe her illness was real and painted her as lazy, complaining or just plan "nuts."

But now, scientists have identified a retrovirus that may explain the cause of CFS -- a condition once sarcastically called the "yuppie flu."

Since it was first identified 25 years ago, the syndrome often has been considered a sham, and many patients have been referred to psychiatrists when no clear diagnosis was made.

"Once my HMO even asked me to take a truth serum to see if I was lying," said Toussaint, now 48 and founder of For Grace, an organization that advocates for women in pain. "I was so ashamed."

Patients like Toussaint, who say they feel vindicated that their illness is real, are celebrating the news.

Though many in the health field await more proof, investors and medical technology companies are buzzing about the implications of finding a biomarker and possibly an eventual vaccine and treatment.

Between 1 million and 4 million Americans suffer from CFS, according to the Centers for Disease Control and Prevention. At least one-quarter of those are impaired enough to be unemployed or on disability.

This research, announced this month in the journal Science, was led by Judy Mikovits, a 22-year veteran of the National Cancer Institute and retrovirus expert at Reno, Nev.'s Whittemore Peterson Institute.

She reported 68 out of 101 CFS patients were infected with the contagious xenotropic murine leukemia virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected.

After the paper was published, her work showed that 98 percent of 300 patients tested positive for the retrovirus, which was found in fresh blood and plasma, as well as saliva.

XMRV also has been associated with prostate cancer, and some leukemias and lymphomas. Retroviruses carry their genetic information in RNA rather than DNA, inserting themselves into their hosts' genetic material, where they stay for life.

Although CFS only occurs in about 4 percent of the population, many more asymptomatic Americans could be carriers.

"The study is intriguing," said Dr. Joshua Prager, director of the California Center for Rehabilitation of Pain Syndromes. "There could be a sampling error, but there is hope. If, in fact, there is a marker for the disease, it is something that is truly treatable."

Chronic Fatigue Syndrome Once a Mystery

CFS long has baffled doctors, according to Prager.

The CDC is specific in its diagnostic criteria: Patients must exhibit unexplained fatigue that is not related to exertion and cannot be relieved by rest. At least four other symptoms also must be present for six months of more, including impaired memory, unrefreshing sleep, muscle aches, joint pain, headaches of a new kind, sore throat or tender glands.

Rivka Solomon's battle with CFS began two decades ago at the age of 21 when she and two best friends contracted infectious mononucleosis.

"They were sick for a week and I was bedridden for a year," said Solomon, now 47 and founder of the Boston-based women's empowerment group, That Takes Ovaries.

Seven years later, her symptoms intensified after a bout with "walking pneumonia," and she was forced to give up a career in international politics and to confine her work to writing a book about her pain.

"It's unrelenting fatigue and comes with non-restorative sleep," she told ABCNews.com. "You are damned exhausted all the freaking time. It's a deep, to-the-bone exhaustion.

"I feel like taking a shower," she said, "but putting my arms up to wash my hair is too much work. And it doesn't ever go away."

Like Toussaint, Solomon experiences a "brain fog," which feels like "you are thinking through a thick cloud of pea soup," and chemical and perfume smells make her "dizzy and wacky."

The very name itself is a stigma, according to Solomon: "It's so pathetic, like calling Parkinson's 'shaky person syndrome.'"

The CDC has called the new CFS research exciting, but preliminary.

"If I don't know the nature of the cases and controls, I can't interpret the findings," Dr. William C. Reeves, who directs public health research on the syndrome, told The New York Times.

"We and others are looking at our own specimens and trying to confirm it," he said. "If we validate it, great. My expectation is that we will not."

The CFS debate goes back to an outbreak in Lake Tahoe, Nev., in 1984. Several hundred patients developed flu-like symptoms, fever, sore throat, headache and neurological problems like memory loss.

Chronic Fatigue Outbreak Dismissed by CDC

The CDC dismissed the epidemic at the time, even though the patients were infected with several viruses, and suggested these were psychiatric problems, according to Hillary Johnson, the author of "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic."

The name was coined in 1987 and "functioned as kind of a social punishment," Johnson said in an op-ed piece for The New York Times. CFS, which now carries the scientific name X-associated neuroimmune disease, is associated with a high suicide rate.

In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 her patients with chronic fatigue. Some of them also had rare forms of cancer.

The CDC tried to replicate her efforts, but ended research prematurely and later criticized her work. The CDC acknowledged in 1999 that it had diverted millions of dollars allocated by Congress for CFS to other programs.

But at about the same time in the 1990s, University of Miami researcher Dr. Nancy Klimas pioneered lymph node extraction therapies for what was then called chronic immune activation syndrome.

Now, drug companies are taking an interest in her work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients.

"They went from very ill to much, much improved," said Klimas, who now directs the Gulf War Illness and Chronic Fatigue Syndrome Clinic at the Miami Veterans Affairs Medical Center.

One company that hopes to find new therapies with Klimas is Ohio-based Neo Probe, which explores activated cellular therapy technology to treat cancer, as well as viral and autoimmune diseases.

According to Frederick Cope, vice-president for pharmaceutical research and clinical development, the one "lingering question" is whether Klimas' sequencing matches those done in the Reno research.

"I wouldn't necessarily assume that it is," Cope said.

Another is getting more information on the long-term effect of this therapy, "not only that is safe, but that it is effective."

But Klimas said, "It's exciting to be excited. It's been a tough field to be in. Like Rodney Dangerfield, we don't get no respect."

The research also may bring new insight into other diseases like Gulf War illness, autism and even schizophrenia.

Klimas understands the urgency in finding vaccines and treatments.

"I take care of HIV patients all day and chronic fatigue patients another day," she said. "Between the two, the CFS ones are the more miserable. Most of my HIV patients are hale and hearty. My CFS patients cannot even participate in the care of their own families."

But no one is more excited than the CFS patients themselves.

"The news completely changed my life," said Solomon. "There's a skip in my walk because, for 20 years, even though no doctor ever discounted me, it's been a real burden and embarrassment. It means there is hope."

"[Chronic fatigue syndrome] doesn't kill you like HIV/AIDS did before treatments, but it really does limit you. You have a very small life," she said. "Now we can focus on strategies and maybe I can get my life back before I am dead."

Copyright 2009 ABC News Internet Ventures


Senior Member
Medical breakthrough puts Reno in spotlight

"Judy Mikovits remembers that eureka moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

It was January 22, and we were in a San Diego restaurant called the Yard House, said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the worlds leading virologists.

We kept waiting for them to say something, Mikovits said. I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, Well, this is going to change their world.
And it has."

"This breakthrough discovery of a new infectious human retrovirus in Chronic Fatigue Syndrome patients also holds out hope to those who suffer from other illnesses, including fibromyalgia, nongenetic autism and possibly even some forms of cancer, WPI researchers said."

"What makes this especially exciting is patients, who basically have been ridiculed and poked fun at for having a disease that has been given very little credibility, finally would have hope, Lombardi said. "

"The rate of the syndrome within families suggests it could be transmitted more easily than previously thought, but additional studies must be done to determine how the retrovirus passes from person to person, Mikovits said. "

[Note:this is an excellent article and I highly recommend it being read in its entirety.]


Senior Member
Scientist's empathy for patients comes from own family's experience with cancer

"It was the death of her grandfather when she was a child that set Judy Mikovits on a path to help others stricken with illness, especially those who deal with the ridicule associated with Chronic Fatigue Syndrome."

"In those days, people didn't even say the world "cancer," and some people still harbored the false belief that it was infectious, she said.

"My grandfather was dying of cancer, and nobody would talk about it," Mikovits said. "One day I said to him, 'Don't you know you're dying?' And he said, 'Don't say that. I don't want your grandmother or your dog, George, to know."

"He was dying of cancer, and nobody would talk about it. That's what bothered me most."

"It's what instilled the 52-year-old microbiologist with the empathy she has today for patients with Chronic Fatigue Syndrome.

"All these CFS patients are stigmatized; that's why they stay in the closet. I think we're where we were 40 years ago with cancer," Mikovits said. "It carried a stigma like CFS does."

""You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy," Mikovits said."

[This is just an excerpt. Highly recommend reading in entirety.]


Senior Member
Though syndrome brings hardship, family tries to live fully, positively

"When 9-year-old Benjamin Ghusn makes a wish, he usually asks for the same thing.

"I almost always wish for Becca to get better," Ben said, as he sat on the sofa in his family's southeast Reno home curled up next to his sister, Rebecca, a petite 15-year-old who suffers from Chronic Fatigue Syndrome.

Her story is one that will be familiar to others with the syndrome and their families.

At age 11, Rebecca became ill with what appeared to be a severe case of the flu. But this flu didn't go away. The symptoms persisted and worsened."

"Rebecca also suffers from a long laundry list of food allergies that includes gluten, whey, pineapples, oranges and onions.

It isn't an easy way of life, but George and Nancy Ghusn try to make it as normal as possible for the family."

"George Ghusn said the family is "cautiously optimistic" about the news last month about the Whittemore-Peterson Institute's study showing the presence of a retrovirus in 67 percent of the patients.

"Just because they found this doesn't mean that it will eliminate the problem," he said. "Hopefully, it will lead to treatments that will work."