Sunday, 16 January 2011

Fibromyalgia CAN Be Proven!

In reply to my friend E-patient Dave (Dave DeBronkart)'s suggestion to please share with others why it is a myth that Fibromyalgia (FM) can NOT be proven or diagnosed:

Dear Dave
I think I got the message late on Twitter that you wanted me to share some ideas about proof that Fibromyalgia CAN be diagnosed. So here's my humble offering.

The problem is that when the term "Fibromyalgia" was coined in 1988 or so, the medical world called it "A wastebasket term, a miscellaneous category to place patients in when they continue to have pain without any positive blood tests." One interesting fact is that when these people go see different specialists who take various other tests, they DO find a real diagnosis such as hypothyroid or metabolic disorders, cellular dysfunction, so they no longer have the diagnosis of Fibromyalgia even though they have the symptoms. One of the problems of this disease is not being able to think clearly, kind of like having Attention Deficit Disorder (ADD), so you can change and organize this letter any way you'd like.

1) It has been found that 95% of people with Fibromyalgia and Chronic Fatigue Syndrome have XMRV virus. The virus has also been found in some with Multiple Sclerosis and Lyme disease, which have overlapping symptoms with FM. Unfortunately there is only one place in the USA that is able to test for this virus. It's the Whittemore Institute in Reno, Nevada, USA.

It's considered severe enough that the Red Cross have suggested that people with the XMRV virus should not donate blood. They have also found the virus in 3% of the blood supply. http://tinyurl.com/5wzjvnw

2) There is a virus researcher who often claims that her FM (fibro) patients are much more ill than her AIDS patients. Her name is Dr. Nancy Klimas.

3) I can't remember where I read it, but one rheumatologist found that the only patients he had who felt pain when the blood pressure cuff was applied, were patients with FM. This news has spread and has become a starting point for suspecting FM in patients without other diagnosis.

4) The World Health Organization (WHO) seems to be ahead of the doctors in their knowledge of FM. I am hoping the doctors in medical school now will learn the new facts and appropriate respect for the disease instead of the abuse and neglect we get from the older doctors who refuse to learn anything new about the problem. Here is the WHO's statement about FM. The WHO has dozens of pages of information about the disease, various studies, treatments and symptoms. http://www.who.int/

5) When consulting with the Disability Board of the USA, you will find they say that it is a growing and disabling disease, both in the handbooks of SSI and SSDI.

6) There is a medical 400 page manual written by Dr. Devin Starlanyl M.D. that lists every symptom possible in FM, explains why it happens, complete with diagrams. The symptoms are consistent from patient to patient worldwide, so there is no doubt that this can not be a disease of the imagination, as most doctors treat us like it is. See
"Fibromyalgia and Chronic Myofascial Pain Syndrome, A survival Manual" by Devin Starlanyl M.D. and Mary Ellen Copeland, M.S., M.A. It can be boughten as a used book, as it is a bit more expensive than fiction books because of the reference and medical matter, but it is intensely helpful to every fibro patient, it discusses how to live with the illness in almost every area of life.

You can also find her website about FM for more info here, where you can read more than I can research for you:

The WHO agrees that integrative medicine, alternative health practices, and prescriptions work in combination to increase the quality of life in an FM patient. What we are waiting for now is an anti-viral for the XMRV virus. They made one for HIV, HPV, type A flu and cold virus, and soon it will be our turn as well.

Thanks for asking me, I also have lupus which makes my health and energy limits much more complicated. I wish I could have done more research for you.

Best wishes,
Sheila Wall/Penlady on twitter, Bluebirdy on blogspot.


the information you give here is not really accurate, the study of WPI was done on CFS patients, not fibromialgya. Although both conditions are related, the clinical diagnosis is diferent, and therefore the Science study was done on CFS patients not Fibro patients. A small study was done on Fibro patients and 60% had XMRV, but that small study is unpublished and not statistically significant because of the small sample...
Although your intentions are good, your information is NOT factual.

Hello Carlitos;
Thank you for your comment. I'm no scientist, it could be that I was given different information through my fibromyalgia support groups than you have been given. I said that WPI (Whittemore Peterson Insitute) is where you can get tested for it, I didn't state that WPI did a study on FM. From what I remember, the study was done by some other agency, before WPI moved to a different state 1 or 2 years ago, then FM patients were referred to WPI if they wanted to be tested. I think the percentage of FM patients with XMRV is not a big issue, because the fact is that XMRV is still a problem in the majority of FM patients, therefore an anti-viral specifically for XMRV would change the quality of life for a lot of people with FM, CFS, M.S., and Lyme disease. I can even accept your number of 60%, because I know that people with fibromyalgia can be misdiagnosed when they actually have some other unfound condition. Therefore "fibromyalgia" can be caused by different things. However, Because your number of XMRV FM victims is different than mine does not mullify the rest of the information, and does not nullify the fact that there are dozens of FM symptoms and signs that CAN lead to a positive diagnosis. I live in a country where we can't even be tested for it yet, which is frustrating, but if there is no treatement for it once you find out that you have it, I guess the test is a waste. Once they develop an anti-viral, that's when the test would be helpful. My mother and I have been taking an anti-viral only available in Canada, (we both have lupus and FM), and we have felt better while on that, but not 100% better. It's called Amantadine. I often wonder if that would help CFS patients.
I will follow your blog. I would like to know more about XMRV.

From the WPI (copy and pasted)

The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.

We have detected the retroviral infection XMRV in greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested.

For more information go to


or http://www.facebook.com/home.php?ref=home#!/pages/XMRV-Global-Action/216740433250

And, unfortunately XMRV is not a "simple" virus like the flu, it is a retrovirus like HIV.
Good Luck!

THANK YOU ANONYMOUS! I'm sure that's what I read previously and where I got the number of 95%.

Very meticulous and well researched dissertation on FM. Those who are suffering from this dreaded disease just like you will find in your post a haven of useful information not only of the disease itself but on the prevailing attitude of modern and outmoded medicine towards this sickness. The Lord has granted you wisdom and resourcefulness to do all these things for others to benefit. God bless you more for your effort to reach out to those who are similarly suffering from these diseases neglected and avoided by most health authorities. Thanks for the post. God bless you always.

Thank you Mel! May God keep and protect you and your family.

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