If fm/cfs is caused by a virus then is it a virus?

Discussion in 'Fibromyalgia Main Forum' started by doxygirl, Nov 3, 2008.

  1. doxygirl

    doxygirl New Member

    i just don't get it....if this dd is caused by a virus then how can it not be a virus?

    A few weeks ago there was a video posted on here in regards to a lab that claims to have " a test" for this dd...in the video the lab technician says that this dd is caused by a virus!

    I do not understand "lab lingo" so can anyone here explain how it can be caused by one but on be one in itself?

    Ty for anyone who might be able to help me understand

  2. ladybugmandy

    ladybugmandy Member

    maybe the person thinks that the condition is triggered by a virus but that the virus is no longer active?

    do you happen to have a link to the video?

  3. bigmama2

    bigmama2 New Member

    i dont know the answer, but just to let you know- there are some who think cfs may be triggered by a virus that messes us up in many ways (brain, immune sustem, etc) and then goes away. a "hit and run" theory.

  4. richvank

    richvank New Member

    Hi, doxy.

    The relationship of viral infections to CFS is a subject that has been argued back and forth for quite a few years. I'll tell you what I think about it, for what it's worth.

    As you may know, the attention given to this disorder in the U.S. started in the mid 80s with some clusters of cases, most notably one in the Truckee, Nevada and North Lake Tahoe (Incline Village) area. In the past, there had been other clusters or "epidemics" of cases, both in the U.S. and in other countries. The name Myalgic Encephalomyelitis became associated with these clusters in the UK, but in the U.S., the CDC committee that was formed decided to call the disorder CFS, and they broadened the case definition to include individual, sporadic cases as well as the cluster cases.

    In my opinion, the cluster cases were in fact caused by a virulent virus or viruses. I think that Drs. Dan Peterson and Paul Cheney are still of this same opinion. I believe that the Whittemore-Peterson Institute in Reno is working on samples that were taken from the original cluster of cases, and they are focussing on a viral cause.

    On the other hand, most of the cases we see now did not originate in the clusters, but were sporadic in nature. I don't believe the sporadic cases in general are caused by a particular virus. Rather, a range of stressors, including a variety of viral infections as well as other biological pathogens, chemical toxins, physical stressors, and emotional/psychological stressors can be involved in causing a depletion of glutathione, which can lead to a methylation cycle block in people who have the appropriate genetic predisposition. The viruses seen in sporadic cases are usually reactivations of earlier viral infections that the majority of the population carries around in the latent state, including Epstein--Barr virus, cytomegalovirus, HHV-6, and others. As a person remains ill with CFS, their cell-mediated immune response is dysfunctional, so that they are unable to mount a strong defense against viral infections. They thus accumulate more of them over time.

    So I would draw a distinction between what happened in the cluster cases that kicked off the interest in what came to be called CFS, but probably should have been called ME, and what happens daily in the sporadic cases that are continuing to develop in communities all over.

    Best regards,

  5. momof27

    momof27 New Member

  6. CanBrit

    CanBrit Member

    Because of the way my FM started...stomach virus to sacroiliitis to FM, in my case I think there is a direct correlation to viral attack I first experienced. My thyroid, they believe, was also attacked by this virus.

    Sacroiliitis is not a virus but can be caused by one. I've also been investigating arthritis of viral origins. There's an awful lot of conflicting information out there, but in my case, the virus is no longer in my body...just the damage it left.



  7. doxygirl

    doxygirl New Member

    Iam sorry if this is long and hard to use...Iam still not computer literate so this is the best I can do for now...I have the video on my favorites so if anyone can tell me an easier way to post it here please let me know and I will try to do it...

    until then try putting this in your web browser and let me know if it does or does not work


  8. doxygirl

    doxygirl New Member

    This one may be easier to get to...once you get to this url...scroll down to where it says "video" I think it also says something like " major medical breakthrough video" but it is pretty easy to find

    let me know if this works ok? :)


    [This Message was Edited on 11/06/2008]
  9. TeaBisqit

    TeaBisqit Member

    I'm just not sure anymore. I know I caught something that completely disabled me. But the question is, what really happened. I was advanced Lyme anyway. But I wasn't disabled. So did something get in and make it go crazy? Who knows. Is this Advanced Lyme plus another thing? Who knows. Is it a hit and run where it gets in, disables you and leaves? Who knows. I kind of doubt it ever left whatever it really is. I wish we would get some real answers.
  10. winsomme

    winsomme New Member


    do you know when this video was from?

  11. winsomme

    winsomme New Member

    got it.

    Posted: Sep 17, 2008 06:28 PM
  12. mom2many

    mom2many New Member

    Oh my goodness, I was shocked watching that video Doxy, they got close to the end and they said "Those with CFS have a huge rate of having shingles". I'm DX with FM but really feel that I have CFS also. Well I get shingles even other month to even month, my Dr.'s have never known why I get them so often (I don't think they really cared tho). But now this shows that I probably DO have CFS also.
  13. winsomme

    winsomme New Member

    i've always felt that CFS (at least some subgroup) has to do with a chronic infection. that is certainly how i feel about myself.

    that video is encouraging, but one thing that seemed a little strange to me is this:

    if they have found a virus that they think can cause CFS, then why wouldn't the test for CFS be testing for that virus.

    instead they mentioned doing a cytokine/chemokine profile....

    it seems like that is a much less direct way of diagnosing CFS. is there an infectious disease out there where the test for the disease isn't testing for the infection that causes it...

    i guess one possibility is that the virus they thinkg they have found isn't for everyone with CFS and the cytokine profile catches more CFS subgroups..
  14. Heyygirl

    Heyygirl New Member

    This is all so fascinating. I have been dx with cfids. I have some really normal days, but sometimes about every 4 weeks I get a "cold" and after the "cold" symptoms have subsided I am left totally bushed and headachy. It is so embarassing and difficult to get anyone to understand why it takes so long to overcome the cold....after the upper and respiratory symptoms have gone. I feel like such a slug.

    My doc hasn't tested for Lymes yet. He has done me much good this last year, upping my hormones and hmmmmm...brainfog.....vitamins, minerals and enzymes I guess I'll call all that stuff. But I STILL get every virus that comes along and it lasts weeks to get over. I also need to look into cytokine whatever that is and that new thing...oh man...can 't think of it...ah well...guess I'll go back to bed. I really don't want to retire early, but wonder if it is gonna have to happen. My hubby won't be happy about that. Sorry. Rambling.

  15. Nanie46

    Nanie46 Moderator


    I think the easiest way to explain it is: FM/CFS can be caused by a virus (or maybe any infectious agent, even lyme) and the FM/CFS symptoms are simply a RESULT of the damage caused by the virus.

    Therefore, the FM/CFS itself is not a virus....because pain, stiffness, fatigue, etc is not a virus, but the RESULT of the infection.
  16. gapsych

    gapsych New Member

    I think there are many causes of FM/ME but can be summed up as some kind of physical stresser which would include viruses, other illnesses, accidents and in some extreme cases psychological stressers.

    However, my opinion is there has to be some sort of genetic component as not everyone who experiences these stressers to the body get FM/ME/CFS.

    I had none of these DDs before I broke my arm.

  17. ladybugmandy

    ladybugmandy Member

    i do not think we can really know if a virus is still in our bodies or not. antibody tests are unreliable and tissue biopsies are hard to do.

    there have been many studies showing active virus by tissue culture even though antibodies do not show activity and even when cerebrospinal fluid does not show a virus.

  18. karynwolfe

    karynwolfe New Member

    I can't help but be bothered by seeing the "FM/CFS" usages, since FM and CFS are completely NOT the same illness and shouldn't be interchangable. :( Fibromyalgia can be initiated by a virus because of the physical stress it induces, and does not necessarily result from the destruction that any causative virus does to the body. You can also get FM as the result of a car crash (physical trauma), or shortly after getting another disease: The main factor is that something about that particular stressor pushes the body over the edge. There are clear genetic components to Fibromyalgia. It runs in families, much like multiple sclerosis does: MS does not necessarily result from the damage a virus does to the body, but often a viral agent is the initiator. One get also "get" MS after a traumatic event, but that traumatic event itself did not cause the disease: It simply was the trigger that set off the genetic timebomb.

    ME/CFIDS has much in common with both MS and FM, but just because of that, one cannot consider them interchangable. As Rich mentioned earlier, there is a disease called Myalgic Encephalomyelitis (ME) which is, without a doubt, caused by a virus, as demonstrated by the epidemics which date back to the 1930s, probably earlier. Everyone contracted a certain virus and everyone suffered the same symptoms, but some did not recover because of the extent of the brain damage caused by the virus. It is a neurological disease. It was, for a time, called chronic ebstein-barr syndrome.

    Today's CFS definition is very broad and -can- include those who got it due to acute-onset viral infection (those cases -used- to be differentiated from CFS and were instead referred to as "CFIDS") or those whose bodies started attacking them after some unknown trigger, or who developed it slowly over time without ever getting a major infection, et cetera. Personally, this makes me angry, because people who have CFIDS/ME have a much more specific set of symptoms and disease process, and it actually has the potential to be progressive and fatal; it is not a syndrome. People who have been diagnosed using the CDC's critera for CFS could actually have the more specific disease of ME, but because there are no diagnostic critera for ME here, would never know it unless they did their own extensive research, or got diagnosed with CFIDS, back when they used to differentiate. And both groups--people who do not have ME but actually do have a type of CFS, as well as those with ME--suffer by being put into the same research groups, even when their onsets and accompanying symptomology are different. The same goes with confusing FM and CFS, or FM and ME/CFIDS: The treatment for one will actually worsen the other!

    *edited to take out html codes*[This Message was Edited on 12/28/2008]
  19. Nanie46

    Nanie46 Moderator


    I think that the stressors that people suffer, ie: physical trauma, psychological trauma, illness, etc, cause latent infections to reactivate and that leads to our symptoms. This same thing happens with the chicken pox virus when people develop shingles, and when TB reactivates.

    For instance, a person could have had an EBV and HHV6 (or CMV or Parvovirus B19) infection years ago. Then they have a car accident and the stress of the accident reactivates the old infection.
  20. TeaBisqit

    TeaBisqit Member

    but no one has a forest with regards to theories on our illness. I believe I was infected with more than one thing. And I will always believe that. You know your own body. I am leaning more towards this possibly being weaponized Lyme that just gets activated or reactivated when you get different viruses. I think you get the initial infection. Maybe it lays kind of dormant for years. Then you get sick with something you pick up, and it makes the Lyme go nuts. Then, if you're lucky, it might go dormant again or semi dormant, but then you get sick with something else and it unleashes it again. That's kind of what I'm leaning toward in my case.

    I don't know when or if we'll get the real truth. I pray we do in our lifetime.

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