Letters from Our Readers – Questions and Comments 1-03-07

Most Descriptive CFS Name Yet

…An alternative approach could be to name CFS “Sisyphus disease.” Sisyphus was a king in Greek mythology who outwitted/duped death. As punishment, he had to work in the underworld for eternity, repeatedly rolling a rock up a mountain, from where it fell down again. From there, a " Sisyphean task" is one that lasts forever and never yields a result. – Leo


Patient Needs That Go Begging

I find your newsletters informative, but I have yet to find any website that lists places where people can go to receive long term treatment for Chronic Fatigue Syndrome, or depression, or anxiety, in a residential setting…and where a patient can find help getting this treatment paid for.

I have been dealing with these illnesses for 8 years, have been all over this country, and have found NEITHER coordination of care NOR a compassionate community to help me. It would be nice if somebody would investigate this issue. – Julie

Note: These are the types of needs the CFS and FM patient/advocate sessions at the International Association for CFS conference on January 10-14 in Fort Lauderdale will discuss (see http://www.aacfs.org/p/224.html ). We look forward to the resulting reports on advocacy priorities and strategies.


Seeking Info on Dr. Montoya’s Treatment

I am trying to find out if someone interested in Dr. Montoya's treatment can contact him to find detailed information about this treatment and can try it with the help of his own primary doctor?… If not, is Dr. Montoya looking for volunteers for his future experiments? I could not find Dr. Montoya's contact information. If you have it, I will appreciate it. Thank you. – Balaram

Note: Thank you for your excellent questions. We believe you are referring to the report in ProHealth’s archives on a paper that Dr. Jose G. Montoya, MD, delivered at the Barcelona conference on the HHV-6 virus in May 2006, “A Herpes Drug May Make Energy Soar for Chronic Fatigue Patients” (http://www.immunesupport.com/library/showarticle.cfm/id/7152/). The Stanford University-based researcher reported on his study using the antiviral drug valganciclovir – which works by preventing viral cells from multiplying and targets the human herpes virus (HHV-6) in CFS patients. In that pilot study, 9 of the 12 patients involved reported a great improvement in their condition, though Dr. Montoya indicated these preliminary results would have to be studied in much larger, controlled, trials before conclusions could be drawn regarding valganciclovir’s potential use in CFS treatment. Notably, valgancilovir is a drug with serious potential side effects, used to control certain “cytomegalovirus” infections in AIDS patients and to prevent these infections in organ transplant patients.


Soy – Candida Sense or Nonsense?

Mark Pellegrino's article in the December 13 CFS newsletter, “Candidiasis – Yeast Infection and Nutritional Repair,” has a confusing contradiction. In this article, he [writes]: "The Fibromyalgia diet that I described in Chapter 17 is also a good anti-yeast diet. (See “Why Weight Gain is a Problem with Fibro, and What to Do About It” – http://www.immunesupport.com/library/showarticle.cfm?id=7468&T=CFIDS).

But in that diet he includes both cheese and soy – foods he says to avoid in the candida article. I'm confused…is soy (tofu, etc.) to be avoided along with soy sauce? I was told to avoid both… – Denise

Note: We forwarded this question to Dr. Pellegrino, who responded, “I think Denise is very perceptive because she did pick up a confusing contradiction that I never realized I had written. I think the best way to reconcile is to realize that some apparent ‘good’ foods can be higher in sugar. A good example is yogurt, which in plain form has good protein and friendly yeast. But if one eats the tasty yogurt with all the fruit mixed in, the extra carbs can defeat the good benefit. The main reason the fibro diet is also a good yeast diet is because it emphasizes less carbs.” In general, it’s important to remember that not all soy-based products and dairy products are created equal. For example, most soy products (i.e., tofu and soy milk) are fine, however, soy sauce is not good because of its high sugar content. It’s best to check the labels of individual products and avoid those that are high in refined sugars and carbohydrates.


Developing a “New Life” I’ve had CFS since 1984…Other than my family, no one knows how bad I am. When they see me, I’m out and dressed, makeup on, and they think I’m fine. (They don’t see me here at home in the bed at least 18 hours of the day.) There is no way to tell them how my body really is, so I don’t even try. I’m so happy that they are trying to keep finding a cure or at least a good treatment for this disease. It completely ruins your life as you knew it. You just have to develop a new life and I have done that with the support of my husband. Thank you for your web site. It has helped me so much. I consider myself a very lucky person – Marlene


What About Ampligen®?

What about Hemispherx Biopharma and its product for CFS…[the antiviral drug] Ampligen®? – Magx

Note: For information about Ampligen®, you can search the ProHealth archives. Just go to ImmuneSupport.com, find the “Search Our Site” search box at the upper left, and type in “Ampligen” (without the quotes). The most recent mention of this product was included in our November 29 CFS edition: “Major Late-Round Ampligen® Trial Recruits in Seven States” at http://www.immunesupport.com/library/showarticle.cfm/id/7538/

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