Chronic Fatigue Syndrome on Good Morning America

[PlateletGal]

I think that Dr. Donnica Moore did a good job. I wish that she would have brought up the point how serious CFS is... but overall, I was impressed !


http://abcnews.go.com/Video/playerIndex?id=8664151

[Neoplus]

I agree! Although I agree that it is a real danger and can be serious, what angers me is that it can be treatable with the help of doctors but we all know that a lot of times they won't give us the help we need.  Doctors really need to start being more willing to try things for the sake of the patient.  Luckily, it seems that more and more doctors are opening up and being willing to listen to the patients and what they may be interested in trying.  I hope the data is replicated and confirmed and an insurance reimbersed blood test for XMRV will be available shortly and doctors will start treating with whatever we have in our retroviral arsenal.

[PlateletGal]

One thing I forgot to mention to ppl interested in the recent XMRV findings. Since we could have a retrovirus (which I think we all have to say is frightening...AIDS patients have another retrovirus), that is something that we will live with. Apparently it is in our DNA. One thing I recall about AIDS patients (and this is where the bacteria part comes in) is that I've heard that they do not die from their virus.... they die from co-infections (bacterial along with viral). So I would assume that it would be the same for fibro and CFS patients.

This is frightening information, but the facts are the facts and I think all of us (deep down) know that we have a very real, often serious and degenerative, illness. The good news is... this recent research findings from the Whittemore Peterson Institute has gotten international attention. This should mean more $$$$ to research our illnesses and to come up with treatments and hopefully... a cure. I have seen people claim that they are cured from CFS. They all know that they could relapse... but at least they are having fun right now.. symptom free. There is a lot of hope for all of us.

[PlateletGal]

I heard that this retrovirus was also discovered in fibromyalgia patients, but they weren't clear as to how many patients. You know fibro flares usually can happen during a period of stress... which is more proof that fibromyalgia patients may be suffering from a low-grade underlying infection. I just spoke with a N.P. last night who has had fibro for many years... when I told her about some of the evidence regarding pathogens and fibro, she said, "well that makes sense".

Best,

~PlateletGal

[Ella789]

Absolutely,  EBV   was what started my CFS/fibro  also.  I never was the same after recovering from it.  I  think there is so much more to other diseases that have been triggered by viruses/ diseases  of the past.

Ella     fibro/CFS/SLE  

[PlateletGal]

And.... I hear that she will be on the Dr. Oz show.

It's ABOUT TIME !!!!!!!

[PlateletGal]

Dr. Moore made a 2nd appearance on Good Morning American to discuss the lastest research (XMRV) in CFS patients :


http://www.youtube.com/watch?v=JFBY8UKMVp0

[PlateletGal]

P.S. ~ When I saw my allergist yesterday, he told me about a friend of his who has CFS. Fortunately... his friend was one of the lucky ones, as he apparently made a full recovery. My allergist is now a supporter of alternative medicine. Years ago, that wasn't the case.  ; ^)

[PlateletGal]

That is the frustrating part. There is no standard treatment for Chronic Fatigue Syndrome. The only two treatments that I am aware of that has apparently cured some CFS patients would be the antibiotic protocols (I listed some of them in the health pages) and Valcyte, a very powerful anti-viral drug. The co-founder of PetsMart was on the original study and he is now jogging again. He said he had CFS after a flu-like illness and I believe he was disabled when he participated in the study. I believe Dr. Montoya (Stanford University) is doing another research study using Valcyte, but the results haven't come in so far. Valcyte can lower not only your immune system, but your white cell count and other labs as well. I would think that taking Valcyte, if you have a bacterial infection, could be harmful in the end. My .002 cents worth.

What also is worth noting is that there was a CFS patient in the hospital dying and what saved his life were homeopathic formulas from Germany. Singer / actress Cher frequently flies to Germany for her EBV / CFS treatments and also publicly said that she uses homeopathy.

[SuzCat]

I wonder why she didn't say anything about treating chronic fatigue using vitamin, mineral and other health supplements? Hasn't there been enough peer-reviewed research yet?

[PlateletGal]

I think the sore throat in CFS patients could be from a persistant viral infection. Of couse, on the other hand, many CFS patients have numerous allergies. (confusing, isn't it ?)

All of these conditions, including fibromyalgia, have one thing in common : we all seem to have an underlying infection(s). I think many fibromyalgia patients find this hard to believe... but of course CFS know we have an infection.  This is due to research on CFS and also the fact that most of us became ill after having a viral illness. I know that EBV was the trigger that set-off my CFS symptoms.. without a doubt.

An estimated 60% of fibro patients have some CFS symptoms and vice versa. Of course as you know... we all share symptoms of lyme and autoimmune diseases ! Again, the common denominator in these illnesses is an underlying infection or multiple infections. If you have CFS... your primary complaint will be fatigue. I'm seeing some MedHelp members that I believe are misdiagnosed with fibro, when they actually tend to have more CFS symptoms.

98% of the population will test positive for EBV. The difference is many chronically ill patients will have high EBV titers... whereas, healthy people will have lower titers.


Also, most patients with CFS usually have 2 or 3 of the following abnormalities:

Elevated IgM/IgG coxsackievirus B titer
Elevated IgM/IgG HHV-6 titer
Elevated IgM/IgG C pneumoniae titer
Decreased NK cells, either the percentage or their activity

http://www.medhelp.org/health_pages/Fibromyalgia/Diagnostic--Blood-Tests-to-Help-Diagnose-CFS/show/376?cid=39

[FurballsMom]

That is a good video.  It is nice that the doctor is making more people aware that CFS isn't ordinary tiredness.

I do have a question for you about the sore throat associated with CFS.  Is it viral or allergy in nature?

I ask because I was finally diagnosed with FMS, but I also have MCS, so I have a lot of allergies.  I often have a sore throat that seems to be associated with the allergies.

About four years ago, I developed mild Shingles that started with a burning rash I discovered on my breast while showering.  I was given both antibiotic and antiviral medications to take for about a week.  The Shingles itself wasn't really all that bad, but for the rest of the month, I had some kind of virus syndrome that I never did find out what it was.  It was obviously no ordinary flu virus.  The symptoms changed from day to day and I was in the ER with new symptoms several times that month.  A friend of mine ended up with the same virus and had it for two months versus the one month for me.  She ended up with Parkinson's.  The symptoms involved respiratory, including a persistant cough that had to be treated in the ER, because I wasn't getting any rest, gastro symptoms which included a lot of vomiting, high fevers.  I was in bed nearly 24 hours a day for an entire month.  Since this started out with Shingles, is it possible that this Virus Syndrome (what the medical professionals were calling it) could have been a form of EBV?

I tried to get my doctor to run some tests for dormant EBV, but she won't do it because she says just about everyone has dormant EBV.  Is there any way for me to find out if that virus was EBV?

[PlateletGal]

Of course the drug that Dr. Moore must be referring to for treatment of CFS is ampligen, an experimental drug that is administered intravenously and is still waiting for FDA approval for treatment of CFS/ME, HIV, renal cell carcinoma and malignant melanoma.



http://en.wikipedia.org/wiki/Ampligen