Protein in Virus Linked to Chronic Fatigue Syndrome
We have yet another viral discovery linked to chronic fatigue syndrome (CFS or ME/CFS) - and it’s a protein in a particular strain of human herpesvirus-6 (HHV-6), a virus long suspected of playing a role in many cases of ME/CFS.
Japanese researcher Kazuhiro Kondo, MD, PhD, has spent the last 2 decades trying to identify a “latent protein” responsible for chronic nervous system disease and associated mood disorders, and now he believes he’s done it. (Latent means not currently active or not apparent.)
Dr. Kondo says his team found this strain of HHV-6 in people with ME/CFS, but not in healthy people. This virus travels from cell to cell, taking up residence in the brain and other tissues. Because it doesn’t release particles in the blood, standard blood tests don’t pick it up.
Adding support to Dr. Kondo’s claim is a Stanford University study showing that the antiviral drug Valcyte (valgancyclovir) (known to be effective against HHV-6) improved cognitive function in people with ME/CFS.
Obviously, it’s great to know this virus is there and that Valcyte helps fight it. Even better is that scientists already know what test would detect this HHV-6 protein (elevated IgG antibody titers, for those with medical knowledge).
However, the test isn’t available right now, and it could take years to get it validated and into commercial production. At least now there’s a test to work toward, though, and in the meantime we have stronger evidence that Valcyte may be an effective treatment.
Have you tried Valcyte, or other antivirals? I’d love to hear about your experience! Leave your comments here or in About.com’s Fibromyalgia & Chronic Fatigue Syndrome forum.
Suggested Reading:
- Is a Retrovirus in Our DNA Responsible for ME/CFS & Multiple Sclerosis?
- Drugs Used for Chronic Fatigue Syndrome
- Symptoms of Chronic Fatigue Syndrome
Posted by Adrienne Dellwo
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I am on valcyte and have been for 3 weeks. I am writing about it on my blog although I also write about other things. I am considering a blog just for my CFS situation right now, given I am taking valcyte and there is a need for information….there are many who seem interested in knowing more .
suffice to say, I feel horrible right now and too exhausted to write much. The drug is hard to take, has a billion side effects and we are having trouble getting the dose right…too high and too many side effects, too low and I am sick from taking the drug but it “seems” like nothing much else is going on….it is my understanding my symptoms should become much worse within another week or so if it is going to do anything however it has not been so black and white. My doctor is up on this, keeps in contact with Dr. Montoya and so we will see. I would not have even done this if my titres did not come back so high but I really had no choice. I had someone ask me how/what tests they did to determine this and all I know is my blood was sent out and it took a few weeks to come back with the titre/antibody etc to HHV 6.
Hello,I am on my 11th week of valcyte and my symptoms became the worse around week 6 or 7 and from that point got worse. I am still on it and will remain on it. I am also taking it for HHV 6.
I have had CF since i contracted TB in 2003, what i need is medical evedance that will link TB as a trigger to CF. As i have a claim in for compansation for CF, they paid out for TB but wont recognise it as a trigger for CF any help you give will be greatly recieved. Paul Seville
I have been on Valcyte 900mg/ day for one year now. I have some days that are much better, some days that are still severely fatigued, but I am not consistent yet. Any other type of infection sets me back for a while. I have had many over the past year. If I could stick to the good days, I am doing better, but not good enough yet. Also, one thing that seemed to play a big role with fatigue was starting on birth control pills to regulate my “non existent” hormone levels. Two months in made a BIG difference.
Even though I’ve tried multiple treatments for CFS I’ve not tried Valcyte so far. Based on the comment I read above it seems that its value is really questionable.
I guess I need to find out how it works in order to determine whether it may be helpful for me (don’t really trust doctors to make this decision anymore).