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If it's a virus, GET and CBT may not work
4 Replies
January - March 10

I found some recent discussion about the value of Cognitive Behavioral Therapy and graded exercise (GET). I think for many of us, these approaches are valuable. But some of us may have contracted a mouse virus known as XMRV. There is more information coming out about this. The Wall Street Journal has had articles about it.

I don't know if anyone remembers the book Osler's Web which came out many years ago, and warned about a coming epidemic of fatiguing diseases. The author now has a good website, and you can find it by googling "osler's web." It has some great links and interesting information.

I browsed another site tonight called It has a lot of valuable information. There is a debate there over some recent research, and I copied the following excerpt from the most recent page:

"Kim McClearly could have told CNN something like this: “The PACE trial is problematic, and here are some reasons why. The selection process eliminated most bona fide CFS patients. Instead, the PACE patients had idiopathic fatigue and depression. Cognitive behavioral therapy and graded exercise therapy are primarily helpful for those with idiopathic fatigue and depression, not those with Chronic Fatigue Syndrome. In fact, THE HALLMARK OF CFS IS POST-EXERTIONAL CRASHING, SO GRADED EXERCISE THERAPY WOULD MAKE THE SYMPTOMS OF MOST CFS PATIENTS WORSE. [my emphasis]

“Many patients with CFS are severely ill and suffer from seizures; swollen lymph nodes; fevers; autonomic dysfunction that makes it difficult or impossible to sit or stand; heart failure; immune dysfunction, including reactivation of herpes viruses; and rare cancers. Some patients are dying, others are consigned to a living death, and compelling evidence points to a newly discovered retroviral infection in these patients that’s similar to the one that causes HIV.

"Despite its trivial name, this is not a trivial disease. To suggest that patients can power through CFS through GET or CBT would be as incorrect as suggesting that those with Parkinson’s disease or multiple sclerosis or AIDS can be restored to health simply with exercise and a positive attitude.”

I'm sorry if this sounds bad. This does NOT describe everyone who posts on here - but it sounds like some who are so very sick and so frustrated. There ARE treatments out there if you have one of these viruses. If you don't know, how can you ask your doctors - or try to educate them - or find the right doctor? So I decided to post this info, even if it sounds scary. These sites have links to some great information. Knowledge is power!

As I've been researching some of these things, it made me think of all the different stories I've read on this forum. We are all so different - we may have very different illnesses going on - that is why what works well for some of us doesn't work at all for others.

Hope we can push for more research, and do the best to educate ourselves about what is REALLY wrong with each of us. (Proper diagnosis! Who does that any more?) It seems that right now, it's too complicated and new, so we get dumped in a big grab-bag called FMS/CFS, and some doctors still don't believe it's real! The author of Osler's Web claimed from the start that there was a deliberate avoidance of this enormous public health issue. The people who are the most motivated to work for change are the people affected by these diseases. That is us!

Sorry this is long. Best to everyone. Please google and read up. I'd love to hear what you all think.


Noca - March 10

I assume this virus would have been detected by elevated white blood cell count seen in any one of my 6 blood tests last year if this was the case behind my FMS.


Cher0208 - March 10

Last time my doctor tested me, my Epstein Barr Virus levels were very high. And so my doctor said that means I have fibromyalgia. She never tested me for trigger points and diagnosed me with fibro just on the basis of how high my EBV titers were. Do you guys know anything about this? What is the relation? And in terms of all these other suspected infectious diseases/virus' that are supposedly causing fibro, what kind of doctor do I go to for testing? This information that is coming out is great news as it is bringing us all closer to understanding this disease. At the same time I feel overwhelmed. I don't feel like I have one awesome doctor to go to that A. Believes in fibro or Epstein Barr and B. really gives a crap about helping me to get better. My pain management doctor seemed cool at first but she just seems over it and annoyed sometimes and I don't want to go and pay out of pocket to someone who is annoyed by my relentless pain and fatigue.
Luckily, the exercising and eating right has been helping a lot.


January - March 10

If you're reading this, please google "CFS central" - there is some interesting information there. Also, google Osler's Web. This author was onto something many years ago, but the medical organizations ignored her. Her book years ago talked about a huge impending public health crisis, and here it is. I used to think fibro showed up in older people; I'm shocked at how many really young people on here have been diagnosed with it. You are right to be angry that your whole young life is gone. There must be something our brilliant researchers can do. Come on, somebody discovered antibiotics, somebody invented a polio vaccine -- nobody can cure fibro? The drug companies are minting money by treating our painful symptoms. But look at the side effects we live with! What if we could find a CURE, and get a life again?

Next time we go to visit our doctors, why don't we all ask them if they are aware of the latest research on how fibro is related to XMRV (the mouse virus)? to mycoplasma infection? to prions? to any other viral infection? is it related to Gulf War syndrome? Why don't we just ASK and see if they can answer our questions? Why don't we hand then a computer printout on some of the latest research? Why don't we ask them if there are any antibiotic or antiviral drugs that help with fibro, chronic fatigue and brain fog? Ask them if the brain fog might lead to Alzheimers down the road. Ask them if fibro is contagious among family members. OK, now we're getting into dangerous territory that nobody wants to think about. If you really want to get scared read about prions and diseases that affect your brain. The google bar is in the right hand corner! : )

I'm NOT saying take away anybody's treatments or drugs. I'm just saying why don't we DEMAND better, more precise diagnosis and treatment? Why don't we push for a CURE - instead of being so nice and just accepting whatever we can get? How many of us take meds and still hurt all day? Don't have energy to do the laundry? I read this forum and I want to cry for most of the people on here, who are NOT getting adequate medical care! Nobody who feels this bad should have to run around to 25 different doctors, and not have their serious pain and brain issues dealt with! This is horrible. Of course the doctors are putting us off - they don't know what to do either. Read Osler's Web, and you will see that the big associations that advise the doctors have been ignoring this for years. There is one group of people who is qualified to speak up…. us.

Noca - what if there are particles that are smaller than viruses and behave differently? White count would not necessarily go up. White count only goes up if immune system is working properly. Prions and mycoplasmas behave differently, and are VERY hard to detect, from what I've read. They "fool" the immune system. Equally hard to treat. The usual medical tests will not pick up anything, you need sophisticated and repeated tests (read about the problem with diagnosing Lyme). And, the problem is we don't really have good treatments.

Possibly antibiotics or antivirals might work for some people. I especially wonder if they might help in cases of fibro-fog - which means something is definitely affecting the brain - possibly some kind of low level bacterial or viral infection. Either that, or drug side effects. All of these can be dealt with.

One form of mycoplasma causes "walking pneumonia." How many of us have had that? Maybe it never goes away, but morphs into something else?

Some researchers are linking mycoplasma with Lyme. The treatment for that is 6 mos. to 2 years of doxycycline, and even that isn't a guaranteed cure. How many of us have had that kind of treatment?

Cher - EBV at least CAN be diagnosed. Google Chronic EBV. That might be treated with antiviral drugs if it's flaring up. You would probably need an infectious disease doctor - but he would have to be educated on newer diseases. You could ASK about possible antiviral meds since EBV is a VIRUS.

I don't think EBV is the same as fibro; I'm guessing some fibro people have it, some don't. I'm not aware of any research on the matter - maybe someone else is? Maybe we could take a poll on here?

What is fibro, really? There are theories, but nobody really knows. It's a whirlpool of symptoms - a syndrome. The drug companies have it carefully worded: "Fibro is THOUGHT TO BE…" We are all dumped in together - chronic illnesses with pain and fatigue. They treat the symptoms, but not many people are getting better in the long run. I think it depends on what you "really" have whether you will ever get better or not.

As far as I know, the only common "test" for fibro is a majority of active tender points and eliminating other diseases - who's even been through that process of testing for all the other diseases you could have? Nobody has time to bother.

From what I've been reading, an underlying mycoplasma infection can damage the immune system (leading to susceptibility to any disease) and possibly the mitochondrial energy system (leading to fatigue). So while the underlying defect may be a serious virus or mycoplasma infection, you are so weakened, you can get many other kinds of diseases on top of it - like EBV, hepatitis, cytomegalovirus, viral cancers etc. Maybe that's why we get "flares" - maybe we manage to fight something off, and then come down with something else.

"Flares" are characteristic of many viral infections - they occur after the virus has lain dormant and multiplied inside the cells. Then, around the same time, the cells die and burst open releasing huge numbers of viruses into the host and triggering symptoms. I was just wondering the other day about fibro flares and how they might relate to viral flares….

Just some ideas. I am only beginning to read up on all this, and would love to hear from anyone else about what they think? Sorry this is so long...

And PS, I agree with Cher, the best thing we can do is support our natural immune system - that is the perfect plan for dealing with most things. Stay as healthy as you can for as long as you can.

hugs to everybody.


kiwiang - March 19

hi cher0208
I to found out after years of tests that I have had ebv, my new doctor thinks there is a link between that and my getting fibro(she is the first one to do this test which I found amazing)I have found the exercise to work wonders to :)




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