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From Our Readers – Comments & Suggestions 11-18-09

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Kiwi Fruit Enzymes & Regularity

Re: Studies showing enzyme complex derived from kiwi fruit supports healthy bowel function.

The article on Kiwi fruit was interesting. Why couldn’t taking a few Kiwi fruits daily provide the same benefit? It might take longer but it would be a lot easier and pleasant than taking a supplement… I have bought a bag [of kiwis] and will have two every evening. Will let you know the results in two or three weeks. – C

Note: Perhaps GI benefits from eating kiwi fruit were the inspiration for a concentrated extract of kiwi enzymes in the first place. We look forward to learning the result of the experiment.


Risk of ME/CFS Post-H1N1?

Have you reported on the potential for increased CFS post-H1N1? And forwarned people to get an early diagnosis of CFS if they don’t recover from the flu? Here’s an article from the Journal of Clinical Pathology, Oct 26, 2009 –
“A case of chronic fatigue syndrome following H1N1 influenza (swine influenza)” – A

Note: This article, contributed by Rosamund Vallings at Howick Health & Medical Clinic in New Zealand, is fee-based, but the brief abstract may make your point – “Case report of an adolescent boy who was diagnosed as suffering from Chronic Fatigue Syndrome 5 months after infection with H1N1 influenza.”


AngiesList Taking Info on Medical Practitioners

AngiesList.com is now taking information about medical practitioners. They do review stuff before posting it to the website, so try not to be too verbally abusive about the bad ones. As Sgt. Friday says “Just the facts, ma’am.” But for most of the bad ones “just the facts” should be condemning enough! – K

Note: Ability to use AngiesList ratings is fee-based. For those who already pay to use it for other services, the healthcare provider list could be a plus. Other sites that offer free doctor listings and the opportunity to review a doctor are the listing at www.chronicfatiguetreatments.com where you can search for MDs in the US, Canada, UK, and Australia, and the Co-Cure Listserv ME/CFS & FM Good Doctor List – www.co-cure.org/Good-Doc.htm.


If You Have POTS (e.g., Feel Faint, Fast Heart Rate on Standing)

A good place to ask questions on dysautonomia [aka POTS, postural hypotension, etc.] would be DINET (www.dinet.org). They have a forum. Autonomic Nervous System Dysfunction is very poorly understood and not part of the medical syllabus in medical schools. Most doctors have no idea what it is. The ignorance is widespread. If you haven’t had one, consider asking about a tilt table test in a hospital to diagnose Dysautonomia. – L

Note: See also YouTube Demonstration of Dysautonomia, a YouTube video of the tilt table test, and the Mayo Clinic’s explanation of POTS.


Retrovirus Research Begun & Dismissed 20 Years Ago

Here is an interesting link from 1991 [pdf of article by Wistar researcher Dr. Elaine De Freitas and Drs. Cheney, Bell, et al.] on evidence of retrovirus antibodies in CFS patients. – G


Vitamin D Deficiency and Cancer

This is an excellent and informative YouTube on Vit D and cancer (“Vitamin D Prevents Cancer: Is It True?”). I watched the whole 29 minutes and found it very educating. I’ve sent it on to friends and relatives. This presentation is by the University of California San Diego Medical School and Moores Cancer Center. – J


Class Action Lawsuit vs Ampligen® Maker?

A Colorado law firm has filed a class action lawsuit (www.dyerberens.com/content/view/98/13/) on Nov 10, 2009, against Hemispherx Biopharma, the producer of Ampligen, for misleading investors regarding the status of Hemispherx’s New Drug Application (“NDA”) for Ampligen with the U.S. Food and Drug Administration (“FDA”). – U

Note: Ampligen is an immune modulating RNA drug that stimulates interferon production. Synthesized in the ‘60s, it has a long history as an experimental drug in ME/CFS research (http://en.wikipedia.org/wiki/Ampligen). To date it has not received FDA approval for marketing.


Dr. Oz Wants ME/CFS Patients Willing to Share Their Story on TV

The Dr. Oz Show website is asking for persons diagnosed with CFS who would be willing to share their story on national TV (http://doctoroz.com/plugger?tid=1465). I sent an e-mail to the show stressing the critical importance of distinguishing between CFS and Chronic Fatigue. I also suggested Dr. Daniel Peterson and Dr. David Bell as highly esteemed CFS experts who dealt with CFS outbreaks in their communities during the 1980’s who have continued to follow patients and study the illness carefully. – F

Note: To see comments on this subject, visit the message string in the ME/CFS & FM Message Board.


Will Track Results of Those Who Get Tested for XMRV

I believe Cort Johnson has a thread up with a poll for those who get tested for XMRV so they can share what their results were. Here’s the thread if you’re interested: http://forums.aboutmecfs.org/showthread.php?t=910 – V

Note: People will report their results in different groups, depending on their symptom severity as measured by Dr. Bell’s CFS Disability Scale. From 0 (completely disabled) to 100 (no symptoms). Cort assures that results are anonymous.


Dr. Montoya Testing Valcyte® Patients for XMRV

Dr. Montoya will e-mail me as soon as he is able to have his patients tested. I am anxiously waiting for Montoya to call or e-mail and say come in and get tested. My next appt. isn’t scheduled until April because Montoya is soooo backed up! I hope I get tested before then. The first thing Montoya said when he walked in the exam room was “Did you hear the good news?” and I said “about XMRV?” and he smiled really big and said “Yeah!” – S

Note: Dr. Jose Montoya, MD, is a researcher at Stanford Hospital Infectious Disease Clinic, known for his experimental treatment of CFS patients with the antiviral valganciclovir (Valcyte).


“Time for Hope!” Dr. Klimas Exclaims

Cort Johnson posted this message on the ME/CFS & FM Message Board for those who are feeling hopeless (see the LadybugMandy string). He is referring to a lecture Dr. Klimas gave recently in Miami. – Z

“She gave a fantastic lecture to a full house in Miami on Saturday (Nov. 7th) about XMRV and what it means to CFS patients as well as those with other neuroimmune disorders. I don’t think I’ve seen her this excited about anything like this in 20 years. She truly believes this is a turning point and a time for us to offer encouragement to everyone suffering with this illness.

“She really stressed that we should be encouraging everyone we know and not let them give up hope now because we’re just too close to solving this puzzle. Dan Moricoli made a video of the lecture so it should be up on his site before too long. It was excellent and very informative. She really knows her stuff and knows how to get the information across in a manner even I can understand! You’ll be interested in watching the video when it’s up and running.”

Note: See Cort’s interesting blog at http://aboutmecfs.org/blog.


What’s Happening with the New Jersey Neuroimmune Center of Excellence?

Q: Do you know what the status of the New Jersey center of excellence for NeuroImmune Illness? Last I was able to find anything was that it passed the legislature in June 2009. Found nothing after that. – R

A: Good question. Last summer we learned that the bill to fund such a center was unanimously approved by the NJ Assembly & sent to the NJ House (www.prohealth.com//library/showArticle.cfm?libid=14673). And Dr. Bell says in his November newsletter that the newly revitalized Lyndonville Research Group has begun “organizing support for the New Jersey NEI center and their satellite branch in western New York.”


Would Move to Reno if WPI Offers Hope of Recovery

I told my husband a couple of weeks ago that I would like to move to Reno because of the Institute… If I believed that the move would lead me to some kind of recovery I would do whatever I could to make the move. – Q

Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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