I'm having problems with my computer so I was not able to read article.

I do think the XMRV virus is going to be a big part of Fibro and CFS.

I've found the Phoenix Rising web site very informative on what's happening with the research on this virus. They also have good info on both CFS and fibro.

Here is a link to their web site.

http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx

It's more what Dr. T says that has me disturbed; a short quote from his article:

We have been treating viral infections (and many other infections) as one of the cornerstones of resolving CFS for decades. The recently reported research on the XMRV virus, while a useful new finding that will help in our efforts to find effective CFS treatments, is in essence but one more documented infection

and from a reader's response:
Dr. Tietelbaum, if you actually want to help ME/CFS patients, learn the facts about this illness and stop selling products to patients that don't work. While your approach may work for patients who have idiopathic fatigue and not ME/CFS, patients have been disgusted by your inability to distinguish between the two for years. Also, if you truly believe XMRV is "just another virus," you obviously know nothing about retroviruses and how they work. HIV -- one of the other retroviruses -- is not "just another virus" and is well-known to allow the resurgence of herpesviruses and other pathogens in AIDS patients that are also common in ME/CFS patients. Human retroviruses are uncommon, and a finding of retrovirus antibodies in 95 percent of an illness population is extremely significant. I'm sure you're in a panic right now about losing your empire of overpriced nutritional products since ...

I know what is tripping Dr. T up--plain a clear.

On one hand he is a CFS sufferer himself, who went on to become a doc. And write two books: "From Fatigued to Fantiastic" and "Pain Free 123". And those books have self-empowering information to help those who suffer with CFS and FM get a better understanding of why they feel the way they do and what to do about it--at this given point in time in medical research. And that is good. But it is a layman's guide.

On the other hand--there's the unfortunate happenstance of the Fibromyalgia & Fatigue Centers. These centers took Dr. T's (and other) research, and treatment for CFS and FM--and totally bastardized it. And unfortunately, they talked Dr. T to fairly recently put his name on their board, as a sorta seemingly stamp of approval. I have not heard anything positive about these center so far in my research.

But that doesn't mean that Dr. T's protocol in his books are bad because of what the centers do. It's a self-guided program that offers a customized plan to suit each person's needs.

And the expensive products that were referred to in the comments in the link? That again would be a reference to the Fibromyalgia & Fatigue Centers. It's supposed to be hideously expensive, and a strong armed "use our products to be part of the program approach".

On the other hand again--the products suggested in Dr. T's books are readily found at a health food store. He does say that he favors some brands, but that you should get what suits your needs. The products for sale on his website--he receives no monies from them. (Stated clearly on the site.)

So, don't give up on Dr. T. The vast amount of research being conducted looking into the causes of the diseases we fight is bound to be ever-changing. And volatile.

He could have put the comments about XMRV better. But then he is a bridge-builder: those who try to incorporate both traditional western medicine AND holistic medicine which looks at the big picture. It is not an easy task to straddle these two polar opposite means of helping a person come to healing.

I do know that Dr. T's FFTF program (from the book) has changed my life. It is really that profound.

Thank You. I'm not a big fan of Dr T. Like alot of people out there they are only interested in make money off our illness. He treats the symptons and for some it helps but he doesn't offer any type of cure.

In my case I think I would test positive for this xmrv virus, and that it could be the cause of my breast cancer back in 99. Although I'm cancer free at this point, I think the treatment lowered my immune system allowing this virus to just take over. Also if you have this virus it is known to keep other virus active in your body. I just wish they would hurry up with the research. They have all kinds of drug companies set up to run clinical trials once there is an FDA approved way of testing for this virus and their are some doctors that are trying antivirals on themselves and other patients when a virus shows up that already has an FDA approved test. It's just a matter of finding the right doctor and hoping they can spead up this research but there are alot of people that don't want to see this happen because then they will start losing money.

Rambling now. I think there are alot of people that are being diagnosed with CFS and FM because their doctors are to lazy to do the test need to find out what is wrong with the individual it's so sad to see how bad and even corupt our health care system is and it's world wide to much politics and other garbage when health care should be the priority.

Hugs

I think you're right to question Dr. T's statement. Everyone's got an opinion. If they can back it up with actual facts, they're worth listening to but you've got to watch 'em. Good eye, Narey.

I take Dr. T. with a grain of salt but I really appreciate that he hasn't buried his head in the sand like MOST other doctors these past 20 years. He really deserves to be called a pioneer, simply because no one else was doing much of anything and he has been diligently trying to work it out.

I research everything any doctor tells me before I buy into it - especially doctors as commercialized as Dr. T, but I do use many of the same treatments he suggests and I have found relief - that's really all that matters to me. I'm not one of his disciples - I found these things on my own and read his book later. He did turn me on to D-Ribose - no - that was Dr. Oz.

He can have all the opinions he wants, but until science says otherwise, I think XMRV will remain significant to our predicament but we don't know that for sure, yet, do we? Neither does Dr. T.

I am not a fan of Dr. T. Did you see him on the Dr. Oz show about XMRV? He was more interested in selling books and promoting FFC than looking at the underlying issue of what causes CFS.

True, he has treated a lot of patients and has a lot of experience, but I think he glosses over any underlying cause of the illness and instead focuses on what the normal population calls "I'm so tired".

His treatment is questionable at best, and I consider gross neglect and misconduct at the least with some patients at FFC, especially with the news of so many patients having heart attacks after the IV treatment given at FFC.

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1386250

Hm, I have to say that I know someone who is going to one of the centers and IS pleased with her progress so far. It IS outrageously expensive to sign on, though.

I can appreciate and respect the benefit you've received from Dr. T (keep making typos so not even trying to spell out his name, LOL!), BluestSkies. And since i can't seem to articulate what it is I don't like, I won't go on about it, but I haven't liked his way of generalizing and ...well, the talk show circuit route he's taking seems to minimize the true experience of CFS and FM to me. A few of us have been dismayed by the high expectations following a big hype about an appearance which are then dashed by his actual bleh statements. He's getting too 'fluffy'.

It's important to weigh all sides of an issue. And to follow what your gut tells you. And yes, when oh when will they get on with the blessed research to help find cures.

Thing is though, a lot of people don't even realize that western medicine's end game is not to heal our CAUSES. But rather to keep us coming back for treatments, products... for bucks. Sad, but true. So even with all of the research I can tell you that it's purpose is at best geared towards a context of Drug Discovery. Not a true cure. Makes you sick, but it's the facts. I know-- I worked in hi-tech biotech during the Human Genome Project-On Drug Discovery for Cancer. And that was the best scientists of the best in the world. Drug companies are who fund the research most, and they go where the money is....

That all being said, in the meanwhile what can we DO to be proactive? How can we help ourselves and others?

I know there's bad feelings about Dr. T lingering ...but has anyone actually read his book "Fatigued To Fantastic" (the newer 2007 version0?

Has anyone really tried the supplement protocol? Aside from D-Ribose that was mentioned?

Don't dismiss it out of hand. He is a pioneer. And he has sound advice for now, on how to better your quality of life. I'm sticking with what I can control--and that's one heck of a start. And yea, lots of the supps are to be found a little here and there in the better books. But it's the way it all comes together that helps.

Now... don't freak out. But I realize that this is a FM forum. And I have the wolves of FM-MPS-CFS-SAD etc.... nipping at my heels. So that's why I advocate more strongly. But man do I WISH I would have tried all this back when I "only" had FM and MPS. It would have helped a lot. So, food for thought on you Fibro-Onlys.

Now, Bluestskies, I like you a lot and I love to read your posts, BUT just want to point out that many of us aren't FM onlies. I am a very private person and I have some lingering hesitation on message boards anymore, and I just haven't listed what~all I am facing or how I'm facing it. Careful not to over~generalize.

That said, I can LOL about reading the book. I probably have, IN the bookstore. I visit the library and the bookstores every chance I get. It's what I love to do when I get a free moment. And many of the books I've read I've done so AT the store, sometimes in bits and pieces. Don't ya just LOVE how you can now take a stack of books and find a little chair and peruse to your heart's content without actually BUYING!? :-)

I ordered from Fatigued to Fantastic after being diagnosed thinking if I got one good idea out of it, it would be worth the $10 I paid for it. At the time I was deathly ill about 29 days a month and had been in a flare for over 6 months after going off Effexor.

I focused on things that sounded like it would apply to me and implemented them. The two things that helped me the most were taking magnesium malate and the homeopathic flu remedy Oscillococcinum to treat my flu-like symptoms of swollen glands and sore throat. Since taking that 5 years ago, I probably haven't experienced that symptom more than 3 times. I don't know what it did, but Dr. T suggested trying it and it really helped.

The other things I noticed in his book that were worthwhile were discussions of adrenal fatigue and hypothyroidism both of which I have. He also mentions food allergies/sensitivies are common with fibro/CFS sufferers which is true in my case as well. When I cleaned up my diet, focused on increasing my salt intake and went off meds, I went into remission.

There is one of his centers about 50 miles from my house that I considered seeking treatment from but I think it was about $4,000 just to walk in the door. Since so much of the stuff is very hit and miss, I figured I could try the supplements on my own.

segulley, I think it may have been you who mentioned flu remedy Oscillococcinum before, and I bought it. But I only remembered to take one single dose. What do you think: is it necessary to take three over a day? I bought the 6 doses box, so I think I ought to just take it when I remember to and save a 3 dose strip for a family member who might need it eventually. Your thoughts?

It seems like I ordered a couple of boxes of the Oscillococinum and took the recommended dosage when I started experiencing the swollen glands and scratchy throat. I think it took more than a couple of doses, but I'm pretty sure I threw some out after the symptoms went away as it was getting old. I just know that I had been having those symptoms for a number of years every time I'd go into a flare and wondered if I had a low-grade infection that the doctors we're picking up.

If you are having symptoms, I'd take the recommended dosage and see what happens.

You can get it at a pretty reasonable price through vitacost.com.

I've read the article. It's just more of Dr. T's self promotion. I have found a different website to be much more helpful: mecfsforums dot com.

Here's the link: www.mecfsforums.com