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Adrienne Dellwo

The XMRV Retrovirus & the Fibromyalgia Connection

By October 18, 2009

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The XMRV Discovery Series

Since news broke of the XMRV connection to chronic fatigue syndrome and possibly fibromyalgia, there's been a lot of confusion about just how strong the fibromyalgia connection really is.

According to the Whittemore Peterson Institute, one of the partners in this research, scientists tested some blood samples from people diagnosed with fibromyalgia and found a high prevalence of XMRV in those samples. However, they point out 2 major short comings of this research:

  1. The small number of blood samples tested
  2. The possibility that some of those samples came from people who were misdiagnosed or had undiagnosed comorbid chronic fatigue syndrome

The misdiagnosed/undiagnosed issue is a big one. Right now, both of these conditions are diagnosed based on symptoms, and their symptoms lists are very similar. Most doctors don't understand either condition well and may be unable to distinguish between them. Some doctors also believe fibromyalgia and chronic fatigue syndrome are really the same condition. Until we have a universal diagnostic test for at least one of these illnesses, we won't have a reliable way to separate test subjects. Once we do have diagnostic tests, it's likely that a lot of us will end up with different diagnoses than we have now.

The researchers behind the XMRV discovery are already moving forward with more research. Until they examine a larger number of people with fibromyalgia, we won't know for sure what this discovery means to fibromites.

Also See: The XMRV Discovery Series

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Comments
October 19, 2009 at 10:09 am
(1) MyFibroHelp says:

There is also a difference between HIV infection and AIDS although they are closely related. The same may be true with XMRV and fibromyalgia. Only research will tell.

October 23, 2009 at 6:07 pm
(2) FibroFilly says:

I also believe that they are one in the same; they simply manifest themselves in different ways, at different times. It’s only a matter of time before it turns into one, the other or something worse. This also shines some negative light upon the pharmaceutical companies who push Lyrica as a ‘cure’ or the fix for FMS. It only treats the symptom…not the cause.

October 27, 2009 at 7:53 pm
(3) Adrienne Dellwo says:

FibroFilly,

It’s rare that I come to the defense of pharmaceutical companies, but I do want to point out that none of them has claimed their products would “cure” anything; the drugs are shown to help alleviate some of the symptoms. And if the cause of a disease is still unknown or unproven, no one can do anything to cure it — all we can do is treat symptoms.

I also want to point out that very few diseases can be truly cured. Most of the time, the symptoms are alleviated to one degree or the other, or the underlying mechanism can be slowed or stopped.

October 23, 2009 at 11:09 pm
(4) Tammy says:

I’ll take a treatment like Lyrica until they find a cure…it’s better than nothin!

October 24, 2009 at 10:39 am
(5) BB says:

Everyone seem to worrying too much about causation and the like, but nobody seemed to alarmed about transmitting the retrovirus, blood banks and the 4% of healthy samples. 4% of the worlds population is 271million. If you then add to that to all the CFS/ME sufferers that they do know of and then add that amount they the ones they don’t know of, you could be talking around half a billion sufferers worldwide with the potential to transmit the disease.

And nobody’s is shocked by this?

October 27, 2009 at 10:12 pm
(6) Adrienne Dellwo says:

BB,

You’re definitely not alone! If other researchers can replicate this finding, I’m guessing that we’ll end up with some changes to protect public health. Here’s a discussion on transmission issues:

XMRV: How is it Translated?

October 24, 2009 at 11:18 am
(7) Suzanne says:

Actually, there are signs to both diseases. A medical sign is an objective indication of some medical fact or characteristic that may be detected by a physician during a physical examination.

Patients with fibromyalgia can be diagnosed in part with a tender points exam. Done by a competent clinician it doesn’t hurt if you do not have it. But because it can be independently reproduced in millions of patients it is a sign. Do ME patients also have this? It depends on how you define ME.

Dr. Benjamin Natelson always checks ME patients for a positive Romberg or tandem Romberg which is a pathological neurological sign. Do fibromyalgia patients also have this sign? Once again, depends on where you draw the line.

As for pharmaceutical companies – you live in a profit driven society. You also live in a free country – if you do not like it, do not buy it. No one has a gun to your head.

However it is the height of self absorption and arrogance to assume that a product that specifically addresses the horrible neuropathological pain patients have should not be prescribed because a profit will be made or because you cannot feel their pain.

Logically that means you also shouldn’t pay medical insurance premiums because someone will make a profit nor should you go to a doctor – after all, they charge money. Once again, if you don’t have neuropathological pain don’t take it. But that doesn’t mean it won’t help someone else.

Very few diseases have a cure – most of the time the symptoms can only be ameliorated. Cold medicine doesn’t cure a cold, but that probably doesn’t stop you from buying and using it.

Oh wait, and if you have the XMRV virus or any other virus be sure to avoid the antivirals – someone in our capitalistic society might make a profit.

Medicalization is a social medicine theory – the same group that says your disease is all in your head – just a matter of cultural interpretation. Think before you jump on someone’s band wagon.l

As

October 24, 2009 at 2:22 pm
(8) Nancy Henson says:

As was said previously in this group of comments, there is confusion about what is FM and what is CFS. The reality is according to some stats is that those with FM only will likely get CFS eventually. The percentages are high. So that means there’s a close link between FM and CFS.

For 25 years I’ve had the symptoms of both. It was many years after onset before I got an FM diagnosis. Then after suffering for 15 years I finally got the CFS diagnosis. And my specialist and others were saying 10 or more years ago that they felt that there is an underlying disorder (for lack of a better term) or an umbrella term under which FM, CFS, IBS, IC, GWS and other disorders/diseases fall.

I think now these new researchers will begin to sort it all out. Keep in mind that diseases like M.S. were being regarded as all-in-your-head 100 years ago and not so long ago either. With new technology they can see what it is but the cause is still illusive. Cure is still illusive.

If viruses/retroviruses cause all the incurable disorders/diseases known today, the researchers have a job on their hands.

October 27, 2009 at 12:21 am
(9) dmacgal says:

I’m sorry to be so ignorant, but what is the “ME” short for? I have CFS, fibro & lupus, so am not familiar with this abbreviation.
Thanks

October 27, 2009 at 4:08 pm
(10) Adrienne Dellwo says:

dmacgal,

ME stands for myalgic encephalomyelitis, which is what CFS is called in the UK. In the US, there’s been a push to change the name to ME/CFS for a transitional period, then eventually drop the CFS altogether. Here’s more on that:

Definition of ME

October 27, 2009 at 9:41 pm
(11) gtarMike says:

I have no clue what I have! It started as periods of extreme all-over flulike pain and fatigue which over 9 months morphed into chronic status, then insomnia joined the brew. It took a year and a visit to the Med Univ of SC/Charleston to get a diagnosis of “a fibromyalgia-like condition”, which is as specific as any doctor as ever gotten. I do NOT have “pressure point sensitivity”, which may be why they didn’t go with straight fibro. After 3 years or so it diminished considerably, but still plagues me enough to be on painkillers (tramadol) daily.
I gave my doc copies of the XMRV findings; his MA called to tell me they have no doable test to determine if I have it. They are testing me now for ciliac syndrome (gluten sensitivity).
But I’m still very much in the dark about why this abomination happened to a prevoiusly normal, healthy person. I haven’t worked in 4 years, lost a 100K job and my home due to this – thing, and BC/BS threw me out on my ear.

October 28, 2009 at 10:50 pm
(12) sandy says:

Hi gtarmike,

My husband has had both CFS and Fibro for over 20 years now and is completely and totally disabled because of it. He is doing good just to get up and use the bathroom, and it is very hard on him just to do that! Anyway, since he has both CFS and Fibo in very severe forms, I’m pretty sure I could help you figure this out.

It sounds very much like you started off with a moderate case of CFS, and then as time went on, and more symptoms came on you, the severity decreased a bit and you now have a lesser moderate case of the CFS. CFS causes pain as well as the Fibro, but in a different way (like a flu illness) and CFS causes more trouble with exhaustion and weakness than Fibro does.

But the fact that you said you don’t have pressure point sensitivity, pretty much tells me (and also doctors) that you most likely do not have Fibro. In fact I’m 95% sure that you don’t. And as I said, what you described sounds much more like CFS. CFS usually (if not always) starts out with achy flu like symptoms, or mono (or what at least feels like mono – and in some cases it is mono), and it just kinda stays with you. CFS can also cause swollen sore lymph glands in the neck or underarms. It can also cause fevers, weakness, trouble with walking or sitting due to weakness, headaches, memory problems, concentration problems, inability to function and a lot more.

But it is true that CFS symptoms and Fibro symptoms are similar in that they both cause pain, tiredness, concentration problems etc. The main difference is that with CFS, the weakness and inability to function is worse, as well as the fevers and flu symptoms. But with Fibro, although the weakness etc isn’t as bad, the pain is usually worse, and definitely includes those very sensitive pressure points, that are very often painful to the touch, and when examined by a doctor who understands Fibro, and he presses on those points, sometimes the patient can’t even stand the pain because it hurts so bad. When the doctor examined him for Fibro, and pressed on those pressure points, he jumped as if someone had shocked him with a stun gun, and nearly hit the ceiling as they say.

My husband (even after 20 years) still can’t believe that all he has to do is touch his arms in certain points, and how much pain it causes him. But we also can’t believe that for over 20 years, he’s been so weak and sick with CFS that he’s been unable to do any kind of work whatsoever, and can almost never go out at all, and is doing good if he can just make it to the bathroom and to his doctor’s appointments.

Hope this helps,

Sandy

October 29, 2009 at 12:11 am
(13) Sandy says:

gtarmike

Sorry, I forgot to tell you something. You asked why would this illness strike someone who was healthy and well. And that’s a good question, but that is exactly what happens most of the time. One day the person is healthy and well, working a great job, enjoying family and friends etc. and then one day, they wake up feeling like they have a flu.

Most people figure it will go away within a few days, but if it’s CFS, it WON’T. It will continue on usually for at least weeks, if not months or years (and unfortunately even a lifetime for some). It seems to me that almost everyone who is struck with CFS is a pretty healthy active person, and then when they are struck down with it, and can’t seem to get back out into the working world etc. their friends and family just can’t understand or relate because they have no idea how bad it really is. Just tell them it’s like having the flu and Mono on continuous basis, and that if the person fights it too hard or too much (like my husband did) it will only get worse, even to the point of being permanently disabled or permanently bedridden.

Hopefully with this new information on the retrovirus, and seeing that most people with CFS do have it, there will soon be some type of treatment to at least lessen the severity of the symptoms.

Good luck to you,

Sandy

November 2, 2009 at 9:18 pm
(14) Terr the fibro bear says:

I find that Lyrica was helpful but for the amount that is required for it to really help caused extreme tremmers in me that are quite immbarrassing, being that I am only 25 years old. I must point out that I have been reading the book “What you doctor mat not tell you about Fibromyalgia” By a Doctor in California that educates on how he believes Guaifenesin works to reverse the symtoms and pain associated with FMS…And have been on the protocol for 7 months and have seen slight relief in my FMS symtoms…which has been better than nothing at all!

Terri

November 4, 2009 at 3:46 am
(15) Karin says:

I am from Germany and live in the US since 2005. I have fibromyalgia since the early 1980s and diagnosed in 1992. On thing what always flabbergast me when I read about the symptoms of fibro, that so little people put two and two together. When you don’t sleep very good for weeks, you develop pain (studies of people that didn’t sleep for more than 3 days and nights got pain all over!!!), you have problem with concentration, thinking etc.
As far as I know all fibromyalgia patients have sleeping problems, long before they developed any symptoms. Some researcher say that we don’t produce enough melatonin and serotonin. Look up what that does to your body and you won’t be surprised. But there are lots of other symptoms that are part of our illness, like dry eyes, mouths etc., rashes that come and go, Irritable Bowel Syndrome, swollen hand and feet, sweating….. and lots and lots more that have nothing to do with lack of a good nights sleep and the symptoms because of that…. and that is what drives us and the doctors crazy.
But the main diagnostic criteria is still the pressure points – the tender points – if 11 out of 18 tender points hurt, and you have some of the other problems, you can be sure you have fibromyalgia.

December 4, 2009 at 4:21 pm
(16) Kim says:

I have noticed that Every single person I have spoken to who has FMS/CFS has had some form of Gynological problems, from dysplasia – to Cancer – Fibroids or a Hysterectomy. Now I am NOT saying that this caused the FMS/CFS I am merely making an observation. Now I know Men get Fms too but I am Just passing on the information that I have gathered. How Many of You reading this have had your own Gyno problems? now dont just say every woman gos thru one thing or another because that is not the case – I Never had anything Not even a yeast infection but about the same time I was begining the severe symptoms of my FMS I to had Pre-cancerous cells in my cervics – I wonder If there is a link now with this report on FMS & XMRV – What do you Think??????????????

July 28, 2011 at 2:51 am
(17) Dawn says:

Kim
I have had chronic fibro-like pain since I was a small child. I began getting severe migraine headaches at the age of 12 and didn’t even start puberty until 15. I had 2 normal pregnancies and have 2 adult children. I became disabled 3 1/2 years ago at 37 yrs old due to FMS, Arthritis, Sleep Apnea, Chronic Migraines, PTSD, plus…but I haven’t hit menopause yet and everything still works like clockwork. I’ve had plenty of doctors over the years tell me it’s just in my head or it’s just hormones or it’s PMS. It’s nothing to do with my female parts. They are not what hurts. I have 18 trigger points that feel like needles shoot thru them to the very end of the nerve. Touch me too hard and it feels like a bruise for a week. I can’t get comfortable sitting, standing, lying down, but I’m so tired I just want to sleep. But I can’t sleep without meds…

A traumatic event usually weakens your body and the FMS/CFS takes over control. Whether it’s XMRV or not.

December 5, 2009 at 2:07 pm
(18) Caryn says:

This comment is addressed to Kim. All my symptoms started after a partial Hyst, where the ovaries where left. They told me I had endometriosis in my uterine muscle. My recovery was terrible and slow, and since that 1996 surgery, my qualifty of life has been destroyed. I am in chronic pain, can barely function, and hurt everywhere. Even with pain management under the care of a pain specialist, my quality of life is terrible. No body understands because it is not like your arm is missing and that is self evident. I have been diagnosed and treated for Lyme, Other Tick born co-infections, Fibro, you name it and now they call it Syrogrens. Bottom line, I was a strong, healthy, energetic woman, and now I am a shadow of my former self. As far as a virus, I do believe there may be a viral component to this and it def effects woman much more than men. I had Parvo Virus where my blood titers showed high levels of both past and current infection for years after the initial onset. There is SOMETHING that everyone is missing, and I remain hopeful for a cure one day. If enough data was put together and analized I am sure there would be some pattern to this that has been missed. It is a terrible way to live. And you loose everything, friends, family, work, you name it. It is a monster that MUST be stopped. I only hope I live to see a cure, not just band-aids.

December 31, 2009 at 11:53 pm
(19) Susan Hemann says:

I have had fibromyalgia for a few years now. I have also had trouble with frequent infections and fatigue. Fatigue is the biggest problem with fibromyalgia. So I am not sure whether CFS and fibromyalgia are related or not. I just know fatigue is definitely a major issue. I also have found the supplement Coenzyme Q10 a help for some of the fatigue. 200 mg, a high dose, but I have found I feel better when I take it.

May 8, 2010 at 1:49 pm
(20) Rain says:

I have been trying to research the connection between FM/M.E. since I was diagnosed in ’86. Both outbreaks of FM/M.E. occurred in the early 1980′s.

M.E. epidemics began as early as 1934, occurring the same time out breaks of Polio began. It is believed by some that M.E. is a viral mutation of Polio, which leads me to wonder if XMRV is linked to Polio (see “A Hummingbird’s Guide to M.E. to corraborate info.)

I’ve had both M.E./FM for over 24 years. I’ve run the gauntlet of abuse, neglect by a myriad of people, but I have also met some amazingly compassionate ones who have these diseases. For them, I am grateful.

What is sometimes skipped by is the fact that both these diseases deplete red blood cells, just like any other autoimmune disease. It is the fact that the body is now incapable of absorbing oxygen properly and nutrients as well. I have an oxygen tank that I use daily and it does help. I am a firm believer that these diseases bleed oxygen from the cells, causing a number of other maladies, e.g. anemia.

Oxygen is vital, but some with advanced symptoms of one or both can make it excruciatingly painful to exercise, which is why extra oxygen while in a flare would be advantageous.

Best regards, Rain

June 13, 2010 at 4:51 pm
(21) Belinda says:

Dang, lost my comment…you all have posted very impressive and thoughtful comments. I can tell that you are right on with all of it. I was diagnosed with fibro in 1996 the year after I was treated for an aggressive breast cancer with aggressive chemo. My theory was that you cannot asssult and I mean assult your immune system that many times with chemo and have it come back without damage. I say often that my immune system came back not liking me. It was finally validated by a recent physician whom I really trust. I saw him for aqua therapy in 2002 and I should hav e stuck with him as he now has a comprehansive practice dealing with Spine, Sports and Joint medicine. In fact, that is what the practice is called. I was on long term anti-inflammatories (@ least 10 years) and I developed Stage 3 kidney disease. Had it for @ least 3 years before treatment last year. Then went to a Stage 4 (failure) in December and the beginning of January. I got off one of the 600mg tabs of DayPro (but it doesn’t matter the name of the drug – all are NSAIDs) in October, I think. Then when the kidney function tests revealed the Stage 4, he took me off of the other one. NSAIDs caused it. – end of story. Well I learned on Saturday from kidney studies and other tests for thyroid (unrelated) that my kidneys are in Stage 3 again. I’m thinking…maybe the fibro being auto-immune or just having had the chemo itself is a factor..the kidneys produce a horomone: (Erythropoietin, or its alternative erythropoetin (pronounced /ɨˌrɪθrɵˈpɔɪ.ɨtɨn/, /ɨˌrɪθrɵˈpɔɪtən/, or /ɨˌriːθrɵ-/) or EPO, is a glycoprotein hormone that controls erythropoiesis, or red blood cell production.) I obtained that for wikopedia. I see that you all are really well-versed in fibro…FIBRO SUCKS is my motto. Does anyone have any thoughts on this? Thank you.

January 13, 2011 at 5:51 pm
(22) Nis9 says:

I took ill in 1989 with a “flu” (told I had 2 at the same time) that nearly killed me at age 20 & have had HIV/Lupus like symptoms ever since. In 2008, I was diagnosed with FMS. Do people with CFS have tender points? They sure do smell the same. I was diagnosed with Endometriosis in 1988 as well for the lady asking about female troubles & FMS. Lastly, I tested positive for XMRV DNA & antibodies a few weeks ago. I asked the lab PR lady about contamination, & she roughly stated they use only human XMRV, I suppose for the serology assay.

February 22, 2011 at 7:48 pm
(23) Skeather says:

I just htought all of you should know that I successfully treat my flu like symptoms (sometimes I have serious issues with not being able to get my body temperature to be one temperature) with the drug Clonidine.

Secondly, yes I too have had cervical cell half way to cancer before.

thirdly, I was a strong activer person prior. I was hit by a car and I think the injuries, plus the viral illness I had at the time, made me vulnerable to the XMRV …which I think I picked up in the hospital while working as an RN. I had a genetically defective immune system and was getting ill a lot at the time….I think I simply breathed it in.

July 31, 2012 at 11:24 am
(24) linda says:

For belinda, I have same issues,fibro,also rheumatoid arthritis,been taking nsaids too long & have issues from it, but really worried most about my kidneys, also upped prednisone to 20mg:( But was wondering whats left to take for pain? was on fentanyl patch, morphine etc. they all quit working & then your left w/horrible addiction etc. this is old post so don’t know if u will get this or email but hope you do & respond or anyone, thanks. lf555555@hotmail.com

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