When chronic fatigue syndrome was called Epstein-Barr, it was believed to be caused by the epstein barr virus which is in the herpes virus family, and causes mononucleosis. Researchers have moved on to other theories since then, but a recent study may cause them to think otherwise. This year a study treated CFS patients with the anti-viral drug Valcyte. A doctor named Jose Montoya, that was treating chronic fatigue patients out of Stanford University,noticed that one of his patients had high levels of circulating antibodies to 3 different herpes viruses. Early in 2007 he completed a study of 25 of his most severe CFS patients. He reported that there was significant improvement in 21 of the 25 patients. 20 of the 21 patients that had a flu-like illness onset had the most significant improvements.
Many of the patients that were treated had been sick for over a decade, and were severely disabled. Some of them have actually resumed work and excersice. Dr. Montoya believes that this treatment may help a certain subset of CFS patients, but a significant portion of the population may make up this subset. Viral infection has often been a suspect in CFS patients, but if this new study comes out with a positive result it might be a breathrough.
Currently Dr. Montoya is conducting a study with 100 chronic fatigue syndrome patients. He has a website that discusses his clinical trial here. I believe that the trial has already begun but there may be updates there in the future. Dr. Montoya recieved a 1.3 million dollar grant from Roche Pharmaceuticals to conduct his research and if this 2nd, larger clinical trial has similar results as the first, then there may be a new effective treatment for CFS.
Hi,
I have just started Valcyte.Does any one know about gain weight or lost of appetite ?
Thanks,
I have been unbelievably exhausted for two months – basically unable to leave bed for more than a couple of minutes. I also have horrific aching and nausea. My general bloodwork from my internist has come back normal, although my Vitamin D was low, and my Leukocytes were low. I feel absolutely miserable. My doctor, at Brigham and Womens, a Harvard teaching hospital in Boston, is at a bit of a loss.
It would seem that I should have tests for various viruses, as well as immune function tests. I have been unable to find any CFS/ME/CFIDS specialists around Boston, at the teaching hospitals or otherwise, and thus would be immensely grateful for any recommendations someone might be able to provide.
Thanks so very much.
Hello Marc,
Valcyte works and I was seriously ill including 3 days in the hospital due to horrible intense pain from CFS. If you have insurance maybe try it for yourself?
Hi Marc,
Dr. Anthony Komaroff of Harvard Medical School is a CFS expert. Don’t know if he sees patients, but it’s a start. Also, check CFIDS of America Org
Good Luck.
hi liz. because your son fell ill pretty recently, and is young, he has a great chance of recovering fairly quickly on HIV meds: AZT, Raltegravir, and Tenofovir. he can be tested for the retrovirus at VIP Diagnostics. for support, information, and help finding a doctor, check out the Phoenix Rising CFS Message Boards.
good luck!
linda
Hi Mark,
Since you’re in the Boston area, try Dr. Jeanne Hubbuch, 288 Walnut St., Newton, MA 617-965-7770, She’s amazing!
Good Luck!
Susan
Hi,
I know Dr.Andereas Kogelnik ,practicing at Open Medicine Clinic, by Elcamino hospital
Mountain view,california. He is a great doctor. Try him if you are suffering from CFS.
Hi, to brainfoged and fatigued to use time on registration, but I could not find any post or comments about a very important study, published in october 2011, and I thought you all should know about this mayor research find. They are now planning a national research study.
“New status to CFS-patients.
I addition to providing hope to millions of CFS-patients concerning treatment, the MDs are giving the patients, as a group, new status.
The two doctors say the results indicate that CFS is in fact a somatic decease”, they say to TV 2 News.”
EGNLISH VERSION OF THE NORWEGIAN TV ARTICLE: http://www.tv2.no/nyheter/innenriks/english-version-norwegian-research-breakthrough-can-solve-cfsmystery-3615631.html
THE PULISHED PAPER:
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358