From Our Readers – Comments & Suggestions 05-12-10

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Two Girls with CFS Video

I think this video clip [“Two Girls with CFS”] shows how helpful and comfortable it is for ME/CFS patients to befriend each other. – Z


Biomarker for Post-Exertion Malaise

Re: The report on “Unraveling the Nature of Postexertional Malaise in ME/CFS…”

“A clinically important biomarker for post-exertional malaise in people with ME/CFS” – looks important, doesn’t it? It’s also interesting that their tests indicated even submaximal and self-paced, physiologically limited exercise produced PEM. – F


Dr. Bell’s $10 XMRV Research Contribution Campaign

Re: “Dr. Bell States It’s Urgent to Speed XMRV Research Given Stifling Interests; Issues Personal Appeal for Contributions to WPI”

Dr. Bell’s suggestion has much merit. I have donated $40 to WPI, $10 for each of my family who suffer from CFS. At least this is money for sorely needed research. If I put it anywhere else it is lost. Also just to let you know of research being done in Australia. Their government is funding $2.5M to identify markers for CFS. My daughter is part of the research. It would be nice to know where else research is occurring. – I

Count me in! Thank you Dr. Bell – I’ve just “beamed” some money via Paypal. I would hate to see the momentum die down to nothing. Three cheers for WPI – please use it well. – L

Dr. David Bell. For those of you not aware, Dr. Bell discovered CFS in his patients in Lindenville, NY at the same time it was discovered in Lake Tahoe. I was diagnosed with CFS in 1988. Dr. Bell is also a physician of the highest itegrity, and has devoted his life’s work to finding a cure for CFS. Dr. Bell’s endorsement of the work at WPI Institute only strengthens my own confidence in the fact that WPI Institute will discover the medication necessary to restore our good health. For the first time in all these many, many years of suffering, we have reason to hope. – S


Two Topical Tips for Restless Legs Pain

• Reading about topical pain killers [in the ME/CFS/FM message board] got me thinking about the “BenGay®” I have to put on my hands at night due to degenerative arthritis in my hands. Last night my left foot was hurting. I have RLS and sometimes it’s not my whole leg that bothers me, but just my feet. Anyway, I put some of the BenGay on my foot and within 5 minutes I didn’t feel the RLS in my foot! I hate to think what I would smell like if I had to use it on my whole leg, but I don’t care! When that happens again, I think I’ll try it. Could have just been a fluke, but it sure helped… – H

• …Absorbine® Veterinary Liniment Gel (topical analgesic) really helps me with leg/foot pain. You may want to give it a try, I can’t be without it.

[Note: It’s interesting that both these “aromatic” horse/human rubbing liniments have been used for more than 100 years. Bengay was developed in France by Dr. Jules Bengue in 1898. Absorbine liniment was developed by Wilber & Mary Young in 1892.]


Tiny Blisters on Hand – What in the World?

I get itchy redness & little blisters on my knuckles every so often. Then I saw a message string on the ME/CFS/FM Message Board where people mentioned they have this too, on their hands, and suggested a LOT of possibilities about what can cause it. One thing was an allergy to latex, which I think could be the problem for me. I’ve been gardening with gloves (that turn out to be latex) for a long time but I read that you can build up a sensitivity. Maybe this info would help somebody else. – I


Vitamin D During Pregnancy

Re: “Optimal Vitamin D Dose for Pregnant Women 4000 IU a Day”

Exposure to vitamin D results in increased expression of IDO (Indoleamine-pyrrole 2,3-dioxygenase), which protects against miscarriage. – S


FDA Supplement Regulation Tacked Onto Wall Street Reform Bill

I know you may be on the Life Extension Foundation mailing list too, but I wanted to make sure you saw this. As one poster on the ME/CFS Message Board says, “LEF’s information is usually reliable and not based on fear mongering.” – K [See “Another Threat to Supplements on Capitol Hill”]


The New “Early Lyme” Test

Re: “New Early Lyme Test 100 to 1,000 Times More Sensitive” from April 21 letters.

This early Lyme DNA test that they’re using at the Milford [Connecticut] Hospital is BIG NEWS for those of us who can get it if we need it, and hopefully for tick-bitten people everywhere as other doctors adopt the test. They’ve already used the test to confirm that ‘Lyme season’ came early to CT this year. [See “Early Lyme Disease DNA Test.”]


Antibiotic Help for IBS Validates “Role of Altered Gut Bacteria”

Re: ScienceDaily article “Antibiotic Prevents Irritable Bowel Syndrome Symptoms for Weeks After Final Dose”

Numerous other studies have already shown that bacteria are involved and have found that probiotics are another effective treatment. Alternative medicine has read the science and known about this for years. It’ll take awhile before conventional medicine is overwhelmed by the science and forced to change their outdated view that IBS is psychological. The medical establishment doesn’t care about science. They will continue ignoring it and continue to treat IBS as a psychological problem and keep pushing antidepressants and other drugs to treat the symptoms for life while ignoring the cause for as long as they can get away with it because profits are the goal, not cures or the health of the patient. – F


Revolutionary Shot for Post Traumatic Stress Disorder

Re: “Safe 10 Minute Procedure Can Relieve PTSD Immediately – Walter Reed Study Confirms”

From what I gather, traumatic event(s) can cause an increase in “fight or flight” nerve growth factor. The ‘sprouting’ sympathetic nerves boost adrenaline production in the brain, and that causes anxiety. The anesthetic shot near the stellate ganglia has the effect of normalizing nerve growth factor production there. It sounds reasonable and I hope the ongoing trials will prove it can safely help many who have been injured in service to their countries. – M


New Book by Bruce Campbell, PhD, CFIDS & Fibromyalgia Self-Help Director

The news is that we [the non-profit CFIDS & Fibromyalgia Self-Help Program] have have just published a new, thoroughly revised edition of our 196-page introductory self-management course textbook – Managing Chronic Fatigue Syndrome and Fibromyalgia: A Seven-Part Plan.

Also, the summer session of our Introductory Self-Help Course (a 6-week e-mail discussion group) will be accepting sign-ups until May 31, and is set to begin June 7. The course cost of $30 includes a copy of the book. For more information, CLICK HERE. – Bruce Campbell, PhD

[Note: Bruce Campbell is a recovered CFS patient who has helped thousands of others since 1998 through his self-help courses and free online resource library. Dr. Charles Lapp, MD, a leading specialist in ME/CFS/FM treatment at the Hunter-Hopkins Center in Charlotte, NC, routinely gives copies of Dr. Campbell’s book to all his patients, and has presented local patient self-help seminars using a curriculum that Dr. Campbell developed.]


European Society for ME Think Tank Supports Myhill Protocol

A panel of ESME Think Tank doctors (top European ME/CFS specialists) has reviewed Dr. Sarah Myhill’s approach to treating ME/CFS patients, as delineated on her website ( They outline current best practice (“the modern international approach”) based on the literature, and conclude “She is covering all the fundamental principles for a correct and up-to-date treatment of these patients.” I noticed they mentioned that hydoxycobalamin (B-12) can be beneficial for many patients due to its effect on the NO-ONOO cycle. – J


Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any condition, illness 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.