Retrovirus Implicated in Chronic Fatigue Syndrome & Fibromyalgia

I wonder if they’ll have a lab test out soon?

I wish they’ll find a cure. My mommy has it.

Finally, some hope!!!

After 16 years, my wife and I are finally excited about something positive in the diagnosis and possible treatment for her condition. Her infectious desease doctor said that when they found the virus it would be a retrovirus. He said this 16 years ago.

I have been saying for 13 years this was a virus like Polio, it effects the nerves which effect the muscles. I had polio in 1956 and now I have Fibromyalgia and they feel very much the same to me…..yeah! now lets find a cure!

This is more evidence that Dr. William Reeves and the Center for Disease Control has failed CFS sufferers. There have been so many people who have suffered because of the CDC.

If we get a diagnostic test from this we certainly deserve a name change. How do you reckon De Freitas’ disease sounds? Why not name it in honor of Elaine De Freitas, the woman who discovered the virus in the 1980s.

If it is caused by a retrovirus how come more men don’t have fms and or cfs? I don’t think viruses can discriminate

more women than men go to doctors and thus less are diagnosed but I believe there are just as many men with Fibro as women…

I have believed all along that a virus was the cause of both FM and ME/CFS. This research was LONG overdue.

sorry , my fibro fog is acting up, I meant to say more women are diagnosed with FM than men cause they tend to see doctors more cause men are more stubborn when it comes to their health and thus are not as willing to seek medical care/help.

I would think and would hope this latest ground breaking research will finally put to rest the talk of these illnesses not being real or just not serious illnesses.

They are REAL PHYSICAL diseases (in many cases severe and disabling) that have been very poorly treated but with more research treatment should improve.

Contrary to one comment, I am a man with infection triggered M.E., often called C.F.S, with both terms being descriptive rather than definitive. However, I have also been found to have multiple infections including Human Herpes Virus 6, Varicella Zoster (think Chicken Pox), Borellia but not Lyme disease, and Candida Albicans. Having been cured of all these infections, no change, but I have now been found to have a bio film protected Streptococcal bacterial infection that because of the
bio-film resists my immune system and antibiotics. This means chronic immune activation, opportunistic viral infections, and a constant feeling of being infected.

I suggest that finding a chronic retroviral infection in so many is significant, and with plenty of antiviral drugs that can be used, great hope. However, in my own condition, rather than constantly catching acute infections, such as a common cold, this is very rare. For this reason, I believe that I may be in a category dominated with a chronic immune response trying to deal with a bio-film protected bacterial pathogen. In both cases, chronic infection against an immune system that cannot cope appears to be the major problem.

Well finally maybe those schmuck doctors who are prone to saying it’s all in our heads will think twice before making themselves out to be idiots.

I was lucky enough to have a doctor who wasn’t a schmuck, but I have many fibro suffering friends whose doctors in their initial search for a diagnosis were a bunch of schmucks.

Wouldn’t it be grand to have some light shed on something as this ailment where it certainly is due??

Interesting comments and it now makes sense to me how I came to have fibromyalgia. (follwing the Polio and leukameia link)

Well now…thank God for the Institute and their research to PROVE once and for all that these are “DISEASES” and not a psychological condition related to hysteria. Maybe the NY Times will do the right thing and stop putting out those bogus, detrimental articles that they write. Let’s hear those “It’s all in your head” comments now. I’m happy that this event has taken place while i’m still alive and can enjoy knowing I am not a raving lunatic (this disease is what is driving me mad). Thank you to all those at Whittemore Peterson and God Bless you all.

Ive been in here a few times lately readng all your comments i was just recently diagnosed 5months ago but i reckon ive had this about 6 years maybe more, the thing is i could list all my aches and pains but wonder sometimes is it all to do with fibro i dont really understand it all… i can relate to what you all say but i feel like im on my own with it.

like my doctor told me what it was and gave me some leaflets…i did read them.
however iam glad there seems to be a breakthrough nice to know scientists are still looking.

another thing… the problems which i suffer most from are moodiness(very severe) and when i try to explain something it comes out back to front (frequent) i want to be a social worker in a few year do you think ill be employed if i have fibro??

What a relief! Those fleeting moments of self-doubt can finally dissapear! Change of topic – just wondering how many folks out there also have Reynauds? (It’s cold out today)!

At last perhaps we have some answers and hopefully maybe a cure. My mother had polio as a child and I have often wondered as a fm sufferer if this has had anything to do with my symptoms. She suffers in the same way as I do chronic pain, sleeplessness chronic fatigue etc., I wonder if there is any link at all, talking to my Doctors they say not, but perhaps if other people are the child of a polio sufferer there may be a link.

The study was looking at the origional Incline Village subjects who had a definate infectious onset and may not apply toall those with CFS but is hopeful for those with an infectious onset. Hopefully the test will be available to our doctors.

Lisa,

Great question on why so many more women have these conditions, if they are in fact tied to a retrovirus. It’s too early to know for sure — I’d guess that possibilities could be differences in the immune system or genetic predisposition. Of course, hormones could also play a role.

hi could someone have a look at comment 16 and see what they think an answer would be great thanks, carolyn, my doctor told me it was smoking causing the discoloration in my hands but i believe it is raynouds after doing my own research,
i will go back to see him but i just hate going all the time, i could be in the doctors everyday with one complaint or another so i try to limit myself lol…

I hope there is a lab test and treatment soon. I have always known this was a virus. When I first got ill 14 years ago it began with a virus and 104 fever. The things I have been told by Dr’s, “friends”, family over these 14 years I would have never believes I’d hear. I hope I can become well again. It’s very sad that people have been suffering this much over 25 years and few scientists, doctors and people cared about it or about us.
I’m copying the NY Times article for my doctor who recently asked me about child sexual abuse being connected to the disease. I was devastated I thought she understood but she was following the CDC “study” proving an association with sexual abuse. Of course, if that’s it they don’t need to spend money on looking for a VIRUS. I hope this helps all of us and we don’t have to deal with the disease and the disrespect !

To leeanne, re: comment #16 -

Yes, leeanne, you could be hired as a social worker if you have FM. I have FM and I work in human services – have for many years now. All after I started having symptoms. It all depends on how bad your symptoms are, what methods of accommodation you’re willing to put in place, and what your employer is willing to permit (if you choose to disclose your FM; you don’t have to).

If I were you, I’d also schedule a psychological assessment to rule out any psychological issues that might be causing your moodiness and difficulty getting things to “come out” the right way. It might be that there are other co-morbid issues going on that need to be addressed in order for you to be really ready and able to perform social work.

Most human services employers I’ve come across are willing to work with you as long as you can convince them you can get the work done and do it well. That’s all they really want to know and see. So it’s really up to you – if you think positive, learn ways to cope and manage your FM, and still want to do it, I say go for it! Good luck to you!

I find this fascinating because earlier this year I had a chronic ulcer on my tongue. Soon after it cleared up, I broke out with large patches of dark, scaly, itchy patches over my arms, neck, chest, abdomen and scalp. It was thought to be a form of Pityriasis Rosea, even though the pattern on my body didn’t match the typical outbreak. It is believed that Pityriasis is brought on by a herpes virus. In addition to
my fFMS and CFS flares, I now get ulcers which lead to another outbreak. I wonder if all of this is connected?

leeanne,

Whether or not you’ll be able to work in a few years is an impossible question to answer. Each of us has a different set of symptoms, different severity, and different levels of ability. Some people with fibro work full time, some work part time, and some are unable to work at all.

Fibromyalgia doesn’t always get worse, likely truly degenerative diseases do. Sometimes it gets worse, sometimes it gets better, and sometimes it goes on indefinitely without any real change. If you keep experimenting with treatments and find things that work for you, you may be able to maintain or increase your productivity and hold down the job you want. Sadly, there’s never a guarantee with fibro.

I have a question. First they said they found this in 68 out of 101 patients with ME/CFS then they refined their tests and found 95% of the patients had this virus. So what do the other 5% have? And isn’t this a very small amount of people to test. Where we all know we have various symptoms, are we all going to have this virus in us? And if we don’t then what will they say we have? Is it all in our heads again? While this is great news, it is also a bit scary, since we all know how many look at us like there is nothing wrong with us. How will one feel if they fall into the 5% of those who do not have this virus. If they have disability benefits will they be denied if they don’t have this virus. Sorry, I look at both sides of this, and while I have only been sick since 1999, and out of work since 2005, I have been trying to get people to understand what CFS is about. I just wonder what people will think if not everyone is found with this virus!

I have often felt like this has to be a latent virus that flares (ususally more than it is latent). My concern is about being a blood donor. I donate regularly and always reveal my fibro and the medicine I take. But can I be passing fibro (the virus) to recipients? They always take my blood. I have Herpes Type I that goes becomes active periodically. I often wondered if herpes could be a candidate since so many of us have it.

This is very exciting news, however it makes me nervous to read over and over that the virus is the possible cause for ME/CFS. Fibromyalgia is not mentioned very often in the article.

I hope this does turn out to be a cause of fibromyalgia as well as ME/CFS. Or at least we who suffer from it are not left out in the rush to find a cure for ME/CFS.

I am excited to find out that a retrovirus has been discovered to be the cause of fibromyalgia, which I have. My one concern is if you get the virus through blood and body fluids, will it be considered an STD? Is it sexually transmitted most of the time? I guess there will be a lot of people claiming to have these diseases through blood transfusions, but there can’t be that many people who had transfusions. Will there be a stigma to having any of the diseases that result from XMRV?

Lily,

First, I want to point out that at this point, the most we can say is that XMRV may play a role in fibromyalgia — we don’t yet know that it’s involved for sure, or that it’s part of the cause. (The ME/CFS research is a lot better, and even it is just a first step, not a conclusion.)

Our minds do go to STD when we hear about transmission through bodily fluids, but that doesn’t mean sex is the only or even most common method of transmission. This is pure speculation on my part, but it could be that it’s not easily transmitted through semen and is more likely passed through blood — which could mean transfusions, mother-to-child, etc. would be more common. We also don’t know how easily it’s transmitted through saliva.

The question is one that’s cropping up a lot — our first retrovirus association is HIV, which came to public attention as an STD (and one linked to a much-maligned minority group), and then we learned later about other means of transmission. The only other known human retrovirus is HTLV, which causes leukemia and some other diseases. HTLV can be transmitted sexually or through the blood, but it doesn’t carry the same stigma as HIV. Also, when researchers have tried to identify populations at risk for FMS & ME/CFS, they haven’t identified a high prevalence in prostitutes, IV drug users, and others at high risk for HIV.

If the XMRV link is confirmed, I’m certain that some people will wonder about infidelity when their significant other is diagnosed with it (as if we needed to add more strain to our relationships.) However, I don’t see the general public associating these conditions with STDs in general, because it’s coming to light in such a different way than HIV/AIDS. Maybe I’m overly optimistic, but I think XMRV could help lessen the stigma we already face.

I find this all very interesting! I have been ill since 1992, and it was going through many doctors and years later that I was diagnosed with FMS. I have always felt that it was not a disease in itself, but symtoms of something else that wasn’t looked for or was hidden. I also have Epstein-Barre virus, CRONIC shingles(which is suppose to be VERY rare) and supposedly HPV. I think this all ties in somehow. I just can’t see me having 50 different things wrong with me! Plus, I haven’t been able to get anyone to tell me how EB virus affects me physically or whatever, it’s like, you’ve got EB, next!

Has anyone had FM or CF symptoms from birth? I am curious about the connection between mother and child or a possible genetic link or birth defect.
I had developemental delays from birth. I am severly farsighted and got glases at 9 months old. Doctors at that time though it was everything from a brain tumor to nerve damage to ADHD to Fragile X syndrome (a chromasomal defect). I’ve had learning disabilities all of my life according to schools and doctors, but it never made sense to me. I always said I had motivation disorder, lol. I was just to tired really. When I was pregnant with my first child, I tested positive for Group B Strep and HPV and I wonder about the connection here. I also had what the doctor thought was Mono after that. A virus is a very interesting concept and I appreciate the new direction for my own research!

I personally don’t know whether this discovery is a blessing or a curse. I am reading all this stuff on line and have a lot of the symptoms of ME which would REALLY depress me even more than I already am. I heard about XMRV on the Dr. Oz show. They only indicated CFS, not FMS. I have always been told they are different conditions but you can have both, but know one has ever said I have CFS. I would be ecstatic if they can connect my FMS to an actual virus, just to know myself that I am not bonkers and it is not all in my head. I was initially diagnosed with Lupus in 1997 and treated with anti-malarial drugs and steroids. But in 1998 when I moved back to Pittsburgh, PA the rhuemotologist that I began seeing said my positive ANA test didn’t have a high enough titre, and said I had FMS. Then all they wanted to treat me with was Anti-Depressants. I already knew I had depression as the maternal side of my family participated in a study that found the genetic link to depression. For years I got it’s all in your head and there is no real treatment for my chronic pain. I worked and got my Master’s in Social Work (I saw the posting above about whether you can work with FMS) and was functioning fairly well until I had a new onset hypoglycemia attack while driving and passed out at the wheel, rearending an SUV. Fortunately it was rush hour so the accident wasn’t serious but I had whiplash and aggravated a congenital lower back problem. As many with FMS know even something minor can floor you. My physiatrist put me on narcotics for the pain, and I have never worked again. Fortunately I am off them now but I am in so much pain I can barely go out.

This retro-virus discovery is hopeful but who knows when a person will actually be able to access the test for it as well as come up with treatment options. Personally it can’t be soon enough.