From Our Readers – Comments & Suggestions 06-29-11

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UCSD Reports CoQ10 Eased “All 20 Symptoms” of Gulf War Syndrome

I learned through the Co-Cure Listserv of this USA Today article on a study done at UC San Diego, that they’re reporting to the Department of Veterans’ Affairs. It says “every single one” of the Persian Gulf War vets with Gulf War Syndrome symptoms who were treated with the antioxidant Coenzyme Q10 were helped. “It is the first ‘medication’ study to show a significant improvement of a major symptom of Gulf War Illness,” and “For it to have been chance alone is under one in a million.” [See “Anti-oxidants ease Gulf War Syndrome, Study Finds.”] – D


Non-Celiac Gluten Sensitivities Often Cause Fatigue, GI Symptoms

The new Update newsletter has a link to an article by Diana Gitig, PhD (“Gluten Can Cause GI Symptoms in People Who Don’t Have Celiac.”) This report on a clinical study was originally published in the Spring 2011 issue of American Journal of Gastroenterology.  What caught my eye was: “Interestingly, the symptom most exacerbated by gluten was tiredness. Since tiredness is a common symptom of IBS, its induction by gluten may shed some light into a mechanism of action.”  – K

Note: We noticed that Dr. Gitig is a biologist and geneticist whose young son has Celiac disease. The site provides a link to a series of Dr. Gitig’s articles on new gluten/celiac research findings published in scientific journals over the the past four months ( The newsletter is free, if you sign up for it.


Power of Pain Foundation Conducting & Reporting on Nerve-Pain Surveys

The Power of Pain Foundation provides community-based support services that address the immediate need of chronic pain patients with neuropathy conditions such as RSD (Reflex Sympathetic Dystrophy)… Post Cancer Pain and Diabetic Neuropathy. Accordingly, beneficiaries include patients who are economically and socially affected by these invisible diseases. Whether you have neuropathy pain or are a caregiver, family member or friend of some diagnosed, we’ll help you face the challenges and life changes of chronic nerve pain, head on.

Power of Pain Foundation (

Note: This site offers information about 16 chronic conditions involving nerve pain, from fibromyalgia to multiple sclerosis, plus resources such as links to doctors, pain groups, and clinical trial information. You can contribute to a number of surveys they’re running to create informative databases (and review statistics based on surveys completed to date).


More on What to Say to Someone Who is Sick

Re: “What to Say and Not Say to a Sick Friend?” from June 22 ME/CFS letters

I don’t agree that saying “What can I do to help?” is something not to say. For many people, that’s how they express their love, and most of them really do want to help. And most of us with chronic illness need help from time to time.

Keep a list of things you need done (for ME/CFS patients, a written list is crucial, since otherwise we’d forget everything) and when you’re asked, pick one of the items that’s within the person’s capabilities without their having to expend too much effort – or ask them to pick one.

The people who pick up needed groceries or household supplies for me if they happen to be going to the store anyway have been a huge help. It’s nonsensical to not make people happy by allowing them to help and make yourself happy by getting something done that you couldn’t otherwise do.
Something people with ME/CFS deal with that someone going through chemotherapy does not is the comment, “You look great”, when it’s actually true. Often the comment implies, “how can you be as sick as you claim if you look so healthy?” I’ve learned to say that that’s because people only see me on the days when I’m well enough to get out of bed, shower, get dressed and drive to town – which are rare. 
Oy, all the well-meaning medical advice. The best I’ve come up with is, “Well, I’m doing a lot better than I was a couple months ago, and since my current combination of scrip drugs, vitamins, amino acids, herbs etc. seems to be working, I really don’t want to try anything new that might interfere with what I’m already taking.”

Or if they push, “I have a genius-level IQ and an insatiable curiosity. I’ve had ME/CFS for 15 years. Do you really think I have not researched, and continue to research, every possible remedy there could be?  That just won’t help this particular problem.”
And then there’s the inevitable “Gee, I’m always tired too. But I just force myself to get up and get going.” My latest analogy is that ME/CFS fatigue bears the same relationship to normal tiredness as a tsunami does to ripples in a pond. If I want them to really understand, I give very specific examples: “I knew I was having a good day when I didn’t have to lean against the sink when I brushed my teeth this morning.” “Too tired to talk today: I can’t even read because I can’t hold up a paperback.” “My feet were freezing cold last night. It took me half an hour to muster the energy to roll over in bed and reach down to the drawer under my bed to pull out a pair of socks and put them on. Is that how tired you are?” 
I have definitely found that the more specific you are, the better people understand. And then, there are the hopeless cases that you just have to walk away from or decide really aren’t your friends at all. – J


Injury to Muscles & Heart Makes Statin Drugs Double-Edged Sword

Re: “FDA Warning Re Popular Statin Drug Dose & Muscle Injury, Pain”

Read the book Drug Muggers by Suzy Cohen. A real eye opener to statins and many other prescriptions. The pharmaceutical companies make $ zillions off this drug alone. There is research on the other negative effect of statins zapping an essential nutrient from the body, mainly the heart tissue. That nutrient is CoQ10, and in essence the gradual decline of this nutrient causes heart tissue damage, thus heart attacks. So for what statins are supposed to be tackling in the form of lowering cholesterol, they are a double edged sword. – R


Vivint – Please Vote for Your Pick of Nonprofits to Win $100,000

ProHealth note: We owe our votes in the vivint.givesback contest to a number of worthy organizations that serve us. Following is a request from one of those – the ME/FM Action Network. They’re based in Canada but their reach is international.

Please vote for the National ME/FM Action Network daily. They spearheaded the Working Case Clinical Definitions, Diagnostic & treatment Protocols for ME/CFS and FM Consensus Documents, known world-wide as the Canadian Definitions, and will be host to the IACFSME International Conference for ME and FM in Ottawa Sept 22-25. These efforts are invaluable to the scientific and research communities around the world.

Vote daily for them at The first time you vote you’ll be prompted to LIKE the Vivint Facebook site. For subsequent votes, you just need to LOGIN and then scroll down and click the VOTE button. If you want a daily reminder, please see event (

National ME/FM Action Network (


Salk Researchers Call Flavonoids “Two-Fisted” Protection

New research done at the Salk Institute for Biological Studies has found that a polyphenolic flavonoid (fisetin), which is most abundant in strawberries, offers impressive health benefits, including support of the body’s mechanisms for dealing with “a spectrum of pathologies” seen with both type 1 and type 2 diabetes, and a lot more. (See “Salk Scientists Say: It’s not an apple a day after all – it’s strawberries!”)

According to the press release, the Salk researchers acknowledges that “the public may be suffering from flavonoid-fatigue, given media coverage of the promises of these compounds, because ‘Polyphenolics like fisetin [in strawberries] and those in blueberry extracts are found in fruits and vegetables and are related to each other chemically. There is increasing evidence that they all work in multiple diseases. Hopefully some combination of these compounds will eventually get to the clinic.”

Other beneficial plant-based flavonoids with similar scientific backing are found in red wine (grapes) and grape seed extract, and olive leaf extract. A product that offers a wide range of these compounds in one formula is FlaviNOx®. It includes flavonoid extracts of Bilberry, Ginkgo leaf, Grape Seed, Green Tea, Milk Thistle Seed, Cranberry, and Hawthorne. These plants have evolved their various flavonoid compounds to serve as natural protection against environmental stressors such as hot sun, infectious agents, and insects.



What Do You Know About the New Super Antioxidant Astaxanthin?

Q: This antioxidant [astaxanthin] was featured in a news piece this week. It caught my attention. Have you heard of this? Any comments? The article said that “Studies have shown astaxanthin helps with cardiovascular disease, arthritis, cataracts and high blood pressure. It has also been shown to help reduce the signs of aging, particularly sun damage.”

A: The word sounded familiar, and when we Googled it, it turned out it was familiar. Astaxanthin is the naturally occurring antioxidant in krill oil (krill are minute astaxanthin-rich shrimp that cold-water fish and whales feed on).


Could Melatonin Support Pain Relief?

Here’s a good summary of new research investigating the potential role of melatonin in pain control. [“Melatonin and its Effect on Fibromyalgia, IBS, and Migraine Pain” – a summary of key points in “Analgesic effects of Melatonin: A review of current evidence from experimental and clinical studies,” published in the April 2011 issue of the Journal of Pineal Research.]  – B


Dr. Holtorf on What Doctors Should Know About Treating Lyme

Re: “Dr. Holtorf on Lyme Disease Diagnosis and Treatment – A Culmination of the Literature” 

Dr. Holtorf, huge thanks for a very comprehensive, basic info on Lyme/co-infections compiled into a short, concise info. I was very impressed when looking down through it all. This will help so much to explain to NEWCOMERS to our diseases, their family, and friends. Thanks ProHealth for bringing this info to us this way. – B (Iowa Lyme activist)

In the last year, I have attended three presentations by Eva Sapi, PhD [Lyme disease specialist at the University of New Haven] on her studies on the effectiveness of different agents against the different forms of Borrelia burgdorferi. Even though she did not include her studies on hydroxychloroquine in her recently published paper, she did present evidence in her presentations that hydroxychloroquine does promote transformation of the Lyme spirochetes into the cyst formation. In her most recent presentation in May at the University of New Haven [May 21 –], Dr. Sapi stated that she has stopped including hydroxychloroquine in her studies because her previous work demonstrated that it was completely ineffective against the cyst form of Bb. – K


Help ME Circle – An Old Reliable

The following seen on the – H

“Long before there were any M.E. forums, I started receiving email newsletters from Jan Van Roijen. He always had the latest news about M.E. and his emails were usually the first place I heard anything. They were always reliable. They still are. He is still sending the newsletter, and now it is called the Help ME Circle. Thank you, Jan. You have been doing a great service for people suffering with M.E. for a long time. I really appreciate all your hard work. If you want to subscribe, here’s the information:
Send an email for free membership to


Look For Trials On ResearchMatch

If you’re interested in registering to be eligible for a clinical trial, check out ResearchMatch ( It is a national volunteer research registry sponsored by a group of academic medical centers across the US to bring interested individuals together with research projects seeking eligible subjects. Like they say, online registering is quick and easy. – L


Note: This information is general 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.

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