From Our Readers – Comments & Suggestions 06-09-10

Free Online Creativity & Illness Group Forming – First Meeting June 16

On May 12, DePaul’s Chronic Illness Initiative held its sixth symposium in Chicago, exploring how the arts can be used to help people cope with & understand chronic illness.

Now Patricia Fennell, a regular speaker at these symposiums, invites you to join “a free, Web-based group that aims to help people with chronic illness participate in a more-accessible community for feedback on and sharing of creative expression. The Creativity, Resolution, Art, Illness & Community (CRAIC) group will meet for the first time on Wednesday June 16 at 11 a.m. Eastern over a web-based platform.”

“Whether you are currently working on an artistic project or simply want to learn more about CRAIC, you are invited to join,” Patricia Fennell says. It is open to anyone, there is no charge for participation, and “it’s not a support group or therapy – rather it’s a safe environment to learn, develop community and get feedback on others.”

For more information go to Pat Fennell’s CRAIC page –

And to register for the Web-based June 16 meeting, go to – D


Dr. Jason Quantifies Meager ME/CFS Info in Medical Texts

Re: “Frequency and content analysis of chronic fatigue syndrome in medical text books” by Dr. Lenny Jason.

FYI, Dr. Jason found that only 0.090% of 129,527 medical textbook pages give information about CFS. Guess that’s why many medical students and doctors don’t understand it. I just hope Dr. Jason has some ideas about how to make this situation change. – L


‘Qualified Claims’ about Food’s Health Benefits Ruled Proper if Supported

Re: “Court Finds for ANH-USA in Stunning Victory Over FDA (Thank You Jonathan Emord!)” – Alliance for Natural Health news release, June 1, 2010

Thanks for all those fighting for our natural health freedoms. By the way: Since this case is focused on Selenium, I’m so happy that I was able to greatly reduce my Hashimoto’s disease antibodies by taking 400 mcg of Selenium per day in the last year. – J


Free Videos of U of Miami Expert Presentations, from Awareness Day Program

The Co-Cure Listserv sent out this news on June 2: You can now watch three free videos of informative presentations by University of Miami (FL) experts on the occasion of 2010 ME/CFS & FM Awareness Day.

The videos are offered on the CFS Knowledge Center website, and sponsored by P.A.N.D.O.R.A. (both Florida-based not-for-profits).

Research & Clinical Advances. Nancy Klimas, MD, director of the University of Miami CFS Clinic, presents a comprehensive update of current research findings & availability of therapies for ME/CFS and FM – viruses, autonomics, neuroendocrine imbalances, sleep, pain

Genomics Research. UM gene researcher William K Scott, PhD, discusses genes, genetic susceptibility & gene expression in ME/CFS/FM – concepts, findings, and research. What they have found so far, especially regarding exercise, and what they hope to do soon.

Exercise. Dr. Irma Rey, MD, a sports medicine expert and team member at the University of Miami CFS Clinic, talks about exercise for those coping with ME/CFS & FM. – E


Linus Pauling Institute ‘Midlife’ Micronutrient Suggestions

At the Linus Pauling Institute website ( I have found a lot of good information on nutrition. I’m over 50, so I checked out their nutritional RDA recommendations “for those over age 50” ( When they don’t agree with the official RDA (for vitamin B-12, vitamin C, vitamin D, and vitamin E), they provide their own suggestion. They also explain why individual vitamins are – or are not – needed in greater quantities at midlife & after. – Y


Translating Dietary RDAs from US to Metric Measures

Re: “Trace Elements in Food: Eating to Meet Your RDAs” by Dr. Sarah Myhill, MD.

Your article “Trace Elements in Food” needs to have the quantities in both measurements [ounces, mostly used in America, and grams, reflecting greater use of the metric system elsewhere]. As an overseas reader I need to convert ounces to metric to understand the quantity. Something like almonds, 5oz (142g) would help everyone understand the amount needed to get the daily magnesium requirement. If I see ounces I tend to tune out, so your article does not help me. These points are not a criticism but an attempt to help other readers. Thanks – R

[Note: This is an excellent suggestion, so we used a handy online ounces to grams conversion calculator to add this information to Dr. Myhill’s article.]


XMRV & Blood Supply Webcast

Dr. Louis Katz, MD, “a specialist in infectious diseases and a prominent figure in national blood banking organizations,” will host a webcasted tele-Q&A this Friday (June 11) on XMRV – Chronic Fatigue Syndrome and the Blood Supply. The program is being sponsored by the American Society for Clinical Pathology as a CME educational activity, and unfortunately participation costs $154. Dr. Katz will try to “clarify the issues surrounding the virus in transfusion medicine,” so I hope that someone will report on any important information covered. – K


Importance of Eating Animal Protein for Lyme Patients (Or Anyone)

Here’s a short article that the Lyme Disease Research Database [LDRD] published on dietary tips by Jean Reist, RN (“Medical pro explains link between protein and healing”). She informs that the lymphatic system is a major part of the immune system, and protein is required to transport needed trace minerals through it. Also she warns against eating too much carbs/sugar & eating too much soy (copper) as a protein source. Reist is based in Dillsburg, PA, and advises Lyme patients on diet and herbal support.

As for the LDRD, you have to be a paid subscriber to listen to their interviews with Reist & other Lyme ‘experts’, but you can sign up for their free e-newsletter to get links to bits like this article. – O

[Note: for information about the lymphatic circulatory system, which is a mystery to most people, see “Understanding the Lymphatic System”. To vastly simplify, as we understand it, blood is pumped through the body by the heart & gets filtered by the kidneys. As for the blood stream’s relationship with the lymphatic system – some fluid from the bloodstream’s capillaries goes into the tissues & becomes tissue fluid, delivering nutrients, oxygen, and hormones to the cells. When it leaves the cells again, as “interstitial fluid,” it carries with it waste products as well as important mineral-containing proteins. The lymph circulatory system then continues absorbing excess fluid & proteins (lymph) as it moves up through the body, from the feet & hands and the organs, to the neck. Along the way it absorbs liquid and fatty acids from the GI tract lining and passes through the body’s 600-plus lymph nodes, where waste is filtered out & pathogens are killed/cancer cells ‘trapped’. When it gets up to the neck, it feeds back into the bloodstream for another circuit.]


NIH Bets Funding of $1 Million on ME/CFS and EBV Studies

The CFIDS Association reported that for 2010:

• The UMDNJ-New Jersey Medical School has received $273 K from the NIH for a study to find previously undetected pathogens in the cerebrospinal fluid of CFS patients.

• And Ohio State University received $700 K for a 5-year study to see how stress might activate or affect the risk of disease associated with latent Epstein-Barr (herpesvirus) infection.

Here’s a link to the study descriptions – – P


The Long, Long Wait for Ampligen

Re: “WPI describes how Ampligen boosts NK cell activity in XMRV-positive CFS patients’ cells”

Q: Ampligen has been in the works for years now. When is it ever going to be available? Or is it? I guess I’m getting a little impatient with the lack of availability of a promising treatment for a disease that has ruined 23 years of my life. – J

A: We do know that the FDA recently called for more trials, and in his March Hunter-Hopkins Center newsletter Dr. Lapp reported that at the time they were “one of two sites in the USA currently participating in an open label study of Ampligen.” We suggest you ask Dr. Lapp this question on the Hunter-Hopkins Facebook, where he and his colleague, Dr. Black, are very involved in offering helpful information and advice.


Will Next CFSAC Meeting & Sep 10 International XMRV Workshop Be Combined?

The CFIDS Association has a good summary of the May 10 CFS Advisory Committee meeting in Washington ( Videos of the meeting were up on YouTube almost immediately, but this is a quicker way to scan what happened.

One point that caught my attention is that the next meeting might be held in connection with the first International XMRV Workshop – September 10 at NIH headquarters in Bethesda Maryland, just outside DC. If so, as far as I know it would be the first time we’ve had so much advance notice of a meeting. – R


Fish Oil Supports ADHD Symptom Improvements

Re: “EPA [fish oil] supplementation improves teacher rated behavior and oppositional symptoms in children with ADHD”

I suggest that mothers thinking of supplementing their ADHD children with EPA (fish oil), or any essential fatty acids, ask a nutritionist about supplementary zinc as well, since many kids with ADHD are for some reason deficient in zinc, and I believe it is needed to metabolize essential fatty acids. – T


Study of Autism & Vitamin D Needs More Research Families

Autism Professor Gene Stubbs of the University of Oregon needs help with his study about vitamin D and autism. He is testing the theory that a mother with one child with autism will not have another if the mother takes vitamin D during her pregnancy. Women no longer need to come to the University of Oregon but can participate at a distance. Professor Stubbs writes:

“Can anyone assist us in recruiting mothers who already have children with autism and the mother is pregnant again before her third trimester? We are giving the mothers 5000 IU D3/day. So far every mother who has delivered has delivered within 1 week or on the date of expected delivery, and the babies are well within normal birth weights. They have not progressed far enough in age for us to screen for autism, but so far, the babies are interactive, have eye contact, are vocal etc.

However, we need more research families to participate. We have recruited other doctors to help us recruit and we have recruited doctors on the Vitamin D Council sites to help us recruit. We still need more families to participate to make our results significant. The families no longer have to come to our site to participate. If you know of any families who potentially might be eligible for our research, please give them my research assistant’s phone number – (503) 351-9255.”

Thank you – John Cannell, MD, The Vitamin D Council


Vaccination a Trigger for ME/CFS?

The ME Association is running a survey to find out how many people believe their ME/CFS may have been triggered by a vaccination. So far about 600 people have indicated some vaccine which they connect with onset of their illness. There’s also a pull-down menu of results from past surveys. – J


Graded Exercise Findings in Norway

Re: “The Most Effective Rated Treatments for Chronic Fatigue Syndrome” published in the MCS Association newsletter.

It’s a joy to see that when ME/CFS patients are asked the results of the (precious few) treatment options doctors have to pick from, most of them are very clear that ‘graded exercise’ therapy has been harmful, not helpful. – F

Note: This information has not been evaluated by the FDA. It is general and anecdotal, includes personal opinions, 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 healthcare team.

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