fibromyalgia ..the cause ???

[farmer giles]

i was sent is email from some one on a forum about fm

what do you guys think

A Case of Chronic Denial



By HILLARY JOHNSON

Published: October 20, 2009

EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?





Health Guide: Chronic Fatigue

XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted) .

That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.

Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.



Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”

Health Guide: Chronic Fatigue

Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.

As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.

It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)

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. DeFreitas’s findings.

That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.

Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.

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.

“It’s 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.

For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.

[Tan]

Thats intense! I used to think people who said they had FM were hypochondriacs. Then I researched more. Why dont more people know of this XMRV?

Its still very confusing.

Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”

[G#Gill]

Most interesting, Jim, and it's about time these docs were granted proper funding for effective research into this crippling disease.

I do know of somebody who has been inflicted with this for 20 years. Her first doctor had no sympathy with her and insisted that she was malingering, and it was all in her mind! She changed her doc and the new doc was a lot more sympathetic, appreciating that it was a genuine disorder, but just did not know how to treat the disease. I haven't seen this person for some time, but I understand that she is managing to struggle on and she has a wheelchair and what she calls a 'cripple sticker' for the car, which is a help. She also has meds which alleviate some of the pain to a degree.

I also know of a professional footballer who developed ME, but luckily, and probably because he was a very fit person any way, he managed to overcome it after a couple of years or so, but not early enough for him to continue with his footballing career, unfortunately.

[farmer giles]

G#Gill;1255144 wrote: Most interesting, Jim, and it's about time these docs were granted proper funding for effective research into this crippling disease.

I do know of somebody who has been inflicted with this for 20 years. Her first doctor had no sympathy with her and insisted that she was malingering, and it was all in her mind! She changed her doc and the new doc was a lot more sympathetic, appreciating that it was a genuine disorder, but just did not know how to treat the disease. I haven't seen this person for some time, but I understand that she is managing to struggle on and she has a wheelchair and what she calls a 'cripple sticker' for the car, which is a help. She also has meds which alleviate some of the pain to a degree.

I also know of a professional footballer who developed ME, but luckily, and probably because he was a very fit person any way, he managed to overcome it after a couple of years or so, but not early enough for him to continue with his footballing career, unfortunately.


i'm learning how to handle mine :-6



the pain can be dreadfull and the tiredness all consuming but i'm alive and kickig i can have a week where i feel great and i can then go two weeks racked with terrible pain and can barely get out of bed ,there does not seem to be any reason to where and where it strikes for example two weeks ago i had severe chest pains and my left arm was hurtin so bad i was pretty much rolling around the floor ,i went to the docs and had ESG and other heart tests done they came back fine ,my legs hurt the most

but i'm lucky i know some one else who can hardly move and is in a wheel chair racked in pain every minute of every day :(

[Imladris]

I get the chest pains too Jim, worried the cack out of me to start with. Had the ECG which was normal, bit reassured for a while but they are back again. Few nights ago I was sat having the chest pains whilst using the laptop. So of course I start looking up symptoms of a heart attack in women (they're different to mens symptoms) - you start worrying when you can tick off several! :wah:



My biggest problem is not telling anyone when they or other things start happening. I don't want to be constantly whingeing about my health, I tell my hubby so he knows why I'm being a lazy sod and not doing much! But I don't tell him about the chest pains- stupid I know they could be serious.



I think the link between XMRV and ME is potentially very important for sufferers of FM, hopefully things will develop for us too as our condition is very similar to ME.

[K.Snyder]

I had "growing pains" as a kid. Perhaps these two conditions are connected...

[K.Snyder]

In my studies I'm currently learning about "actin", "myosin", Troponin", and "Tropomyosin" and I can't help but steer away from the relativity of calcium and the possibilities this may have on fibromyalgia.

My curiosities have lead me to this...Calcium ions have a key role in the physiology of muscular contraction: changes in calcium ion concentration may be involved in the pathogenesis of fibromyalgia. Although, since the plasmatic level of calcium in fibromyalgia patients is always in the normal range, it seemed interesting to evaluate the intracellular calcium concentration. The study was carried out on two groups of subjects: 70 affected by fibromyalgia and 40 healthy controls. The results obtained show that in fibromyalgia patients the intracellular calcium concentration is significantly reduced in comparison to that of healthy controls: the reduced intracellular calcium concentration seems to be a peculiar characteristic of fibromyalgia patients and may be potentially responsible for muscular hypertonus. The effective role of this anomaly in the physiopathology of fibromyalgia and the potential role of drugs active on the calcium homeostasis are still to be confirmed. Role of intracellular calcium ions in the physiopa... [Boll Soc Ital Biol Sper. 2000 Jan-Feb] - PubMed result


Does anyone know of more studies involving this?

[Bez]

farmer giles;1255217 wrote: i'm learning how to handle mine :-6





the pain can be dreadfull and the tiredness all consuming but i'm alive and kickig i can have a week where i feel great and i can then go two weeks racked with terrible pain and can barely get out of bed ,there does not seem to be any reason to where and where it strikes for example two weeks ago i had severe chest pains and my left arm was hurtin so bad i was pretty much rolling around the floor ,i went to the docs and had ESG and other heart tests done they came back fine ,my legs hurt the most



but i'm lucky i know some one else who can hardly move and is in a wheel chair racked in pain every minute of every day :(


I had / have similar symptoms and in December 2009 was diagnosed with Polymyalgia Rheumatica. I have been on Steroid treatment ever since and feel so much better. Obviously steroids are not so good for your body, but hey, but I'm so happy not to have the pain and fatigue. :yh_flower

[Imladris]

Bez that sounds very similar. It's a sh1t of a condition to have at times. My latest adventure with it is clusters of migraines, four weeks of them, almost continuously - bloody miserable making. Thank God for an absolutely marvellously supportive GP, at times I couldn't cope without him. No wonder that cluster headaches are known as suicide headaches! :rolleyes:



Bez it's great to hear that your medication is helping, so much of it is trial and error. Hugs to you - gentle ones:wah:

[Ronaldchiro]

You need to contact a right chiro to deal with fibromyalgia.

[Macadamia]

I remembered reading this article by Dr Eades. It's about vitamin D3, the sunshine vitamin, and how a deficiency of it could in theory be responsible for fibromyalgia.

Sunshine Superman | The Blog of Michael R. Eades, M.D.

I know taking D3 correctly can be tricky. It's a pro-hormone, and so figuring out a correct dosage takes testing. Thought this was a good article on getting D3 correct.

The Heart Scan Blog: Getting vitamin D right