Fibromyalgia & Chronic Fatigue

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Fibromyalgia & CFS Blog

By Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS

Protein in Virus Linked to Chronic Fatigue Syndrome

Sunday June 29, 2008

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.

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Comments

July 4, 2008 at 3:30 pm
(1) Doni says:

AGAIN! LOL…that dog-gone HHV-6! I feel that it is very closely involved in our illness. Last week, Adrienne wrote about how CFS?ME is linked (Tufts U. Pathology) with HHV-6 via the Retrovirus HHV-18.

Now, HHV-6 produces a protein that only we have. As per my RETROVIRUS post, I am heartened to get more acknowlegement,,,

(Previous Post)–
WOW!-this supports my Hypothesis of 2 yrs work & personal research from this former, lowly Sciences-major, namely me.

I have MS and CFS/FB. Worst symptom is unending FATIGUE. I am disabled, but en-abled with time to study.

My Mom suffered horribly with recurring HHV-6…every decade she went thru an “Outbreak”…huge open blisters down her entire digestive track. Foods only from a blender in 2 year periods…dreadful to watch as she struggled to cook family meals for us.

1960-1970’s medical minds, perplexed in Europe and the US, treated her with massive steroids, causing 100 lb. weight-gains, severe depression, …awful side effects.

Tho never diagnosed, prior to her death, I have come to believe that my Mom had MS and CFS/FM, with all the clssic, major symptoms. However, the medical community focused chiefly on her depression, prescribing box-loads of at-that-time popular & strong MAOIs and TCAs–(I called them her “-ILs”–ToferNn-IL, MerarIL, etc.), further debilitating her quality of life and her joy.

Most of my memories of her consist of great mother-daughter talks with myself and my little sister–lying in her favorite spot, her comfy Bed, where she was forced to spend 18 hours each & every day.

Of 3 daughters, I believe that I inherited her HHV-6 syndrome. (Not ever verified as my “team” is not as solid as I would like. Too passive, on which I intend to rectify–when I have an energy-spell! LOL! ) HHV-6, I intuitively know, plays a role. And my younger sister battles endless Shingles outbreaks–HV-3 (HV varicella zoster) which also causes chicken pox. Again, those blasted Herpes viruses plaguing my family for subsequent generations. And her child, at 19, was found to suffer another auto-immune disease, Crohn’s.

I am gratified by this study and I intend to contact lead researcher, Brigitte Huber, PhD of the Tufts University School of Medicine, offering myself for any studies.

Blessings to all of you, who live with or are support to, CFS/FM & MS folks! And to you too, Adrienne, for this marvelous About.com site & your work.

Doni Biggs
DBiggs0001@aol.com

July 4, 2008 at 6:55 pm
(2) Penny says:

I have been treated successfully for several years now with FAMVIR…anti-herpes drug! I take one 500 a day as ‘maintenance’ but during a fibro-flare (I have FM and ME but also had polio as a child which gives me also Post Polio Syndrome) I take 3 500 a day for 7 days–but the symptoms are usually gone after the 4th day! I’m so lucky I found something which seems to help! I’m also lately taking the concentrated montmorency cherry juice and notice a difference in pain if I happen to miss a day or so!

July 5, 2008 at 9:32 am
(3) sandra says:

SO HOPING THIS VIRAL CONNECTION WIL BE FOUND..HAVE HAD CFS/FMS FOR OVER 25 YEARS..ALWAYS COMPLAINED OF THE PAINFUL SWOLLEN LYMPH NODES IN NECK..FEELING MONO ALL OVER AGAIN..TAKE VALTREX TWICE A DAY…WOULD LOVE TO TRY THE VALCYTE…CANT FIND A DR. TO AGREE…THESE HHV’S HAVE TAKEN ATOLL ON ME…3THREEMS

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