From Our Readers – Comments & Suggestions 03-16-11

Special Pollutant-Free Hospital Rooms for Patients with Sensitivities

“German hospital creates rooms for patients with chemical sensitivity,” says Silvia K Muller in her Mar 3 guest blog on The Canary Report website. “For the first time ever, it is possible for people who suffer from environmental illnesses or severe allergies to be in a hospital for medical treatment which is tailored to their health issues.” To read more about the project, click HERE.


Coalition 4 ME/CFS Launched

A network of nonprofit organizations advocating for people with NeuroEndocrineImmune disorders (‘NEIDs’ such as FM, ME/CFS, chronic Lyme, MCS, GWI, and more) has launched its first national project – the “Coalition 4 ME/CFS” (

The mission is to influence public policy by mounting a national strategy for engaging and mobilizing governmental health agencies, the provate bio-medical industry, researchers, healthcare providers and the public toward finding a cure for ME/CFS and related illnesses. To read more and find out about upcoming grassroots activities including May Awareness Day and the upcoming CFSAC meeting, go to the Coalition 4 ME/CFS website.

Coalition 4 ME/CFS member organizations


Celiac Screening/Research Study

The Warren Celiac Center at University of California, San Diego, offers a low-cost celiac disease screening program/research study. For information, along with an application form, click HERE. And for a one-page printable PDF document on testing for celiac disease, click HERE.

WK Warren Medical Research Center for Celiac Disease

[Note: Celiac disease frequently goes undiagnosed. It is an inflammatory autoimmune disorder of the small intestine triggered by gluten, a protein found in wheat, rye and barley. This site offers much good information, news & resources for persons who believe they or their children might be suffering symptoms of gluten sensitivity.]


Interview Blasts Govt. Underfunding in Light of ME/CFS Outbreak History

ME/CFS Worldwide Patient Alliance spokesperson Tina Tidmore was interviewed March 7 on Colorado radio. Tina reviewed the history of ME/CFS outbreaks and the ongoing lack of government commitment to biomedical research for ME/CFS despite emerging scientific findings. [To listen to the interview, click HERE.] – C


Interesting Wild Snail Eating Website

I saw on the Whittemore Peterson facebook page that Elizabeth Tova Bailey will donate a sum to support their research from the profits of a book she wrote while confined to bed with a “mysterious virus”  [The Sound of a Wild Snail Eating]. In fact, I discovered Elizabeth has a whole website that I enjoyed. I recommend her essay, “A Green World Deep in Winter: The Bedside Terrarium,” other readers’ “personal snail experiences,” and a little video of the snail (no wild moves). – B


Next Steps for Neurologic (Nervous System) Lyme Research?

In the December 14, 2010 issue of Internal Medicine News, Dr. Brian Fallon, Director of the Columbia University Lyme and Tick-Borne Diseases Research Center, New York and Dr. John Halperin, Professor of Neurology at the Mt. Sinai School of Medicine, responded to the question “How will research on neurologic Lyme disease need to change to identify better treatments?”

Dr. Fallon proposed a five step approach to advance our understanding: 1) conduct a large prospective study of neurologic Lyme; 2) apply newly developed technologies; 3) create a national repository of clinical specimens; 4) conduct a noninferiority, double-blind, randomized, controlled trial; and 5) test nonantimicrobial therapies.  [Read his full response here.]

Dr. Halperin believes that research must distinguish between four clinical constructs commonly attributed to nervous system Lyme disease: 1) lymphocytic meningitis and multifocal inflammation of nerves, nerve roots, and the central nervous system; 2) Lyme encephalopathy; 3) post-treatment Lyme disease syndrome; and 4) chronic Lyme disease. [Read his full response here.]

Columbia Lyme & Tick-Borne Diseases Research Center News


Symptoms Before You Got Fibromyalgia or ME/CFS?

Here’s a question I’ve never seen asked quite this way before. Adrianne Dellwo at is running a survey on “Which Symptoms Came Before Your FM or ME/CFS?” She explains, “Fibromyalgia and chronic fatigue syndrome are illnesses that tend to come with a whole cavalcade of other conditions. Sometimes, the “others” come on before fibromyalgia/chronic fatigue syndrome and are believed to be risk factors, while sometimes they come on afterward. Which health problems did you have before? Take the poll, and if something isn’t listed there, leave a comment!” – S


CDC Warning on Migraine/Antiseizure Drug Topamax

There’s a lot of coverage of the CDC research on opioid pain drugs and possible birth defects, but on March 10, the Interstitial Cystitis Association (ICA) posted this news item on another drug: “The FDA has upped the risk category for the medication topiramate (Topamax), an antiseizure medication that is also used to help prevent migraine. It is now in pregnancy category D, meaning there is evidence of risk to the fetus. Some IC patients may be taking this medication to prevent migraines, so it may be a concern for IC patients thinking about pregnancy or for those who are pregnant.” – J

[Note: Topamax may also be prescribed ‘off label’ for racing thoughts, alcohol problems, mood stabilization, and other issues. The ICA news item adds that Topamax isn’t normally prescribed for IC, so was not included in their earlier reports to IC patients on medications for pregnancy & childbirth. See for more.]


Taking a Balanced Look at the Opioid & Birth Defects Report

HealthCentral Fibromyalgia & ME/CFS expert patient Karen Lee Richards puts the CDC’s new study on opioids and birth defect risk in perspective for pain patients. If you take a pain drug containing an opioid (e.g., codeine, hydrocodone, or oxycodone), “please don’t panic” she says. Here’s her common-sense explanation of the study details. – ProHealth


Good Article on Antidepressant Weight Gain

Re: “The Catch-22 of Antidepressant Drugs”

This is a good article on gaining weight on antidepressants. As a person with depression issues I struggle with this problem, and I know lots of other people do too. Hope it helps somebody. – K


May 12 Awareness Day & Lobby Day in Washington

Every year, PANDORA organizes a Lobby Day in Washington around the theme of May 12 Awareness Day so that US patients (FM, ME/CFS, MCS, Lyme, GWI) and advocates can talk personally about funding with their elected representatives on Capitol Hill. Here’s the first news release on this year’s Lobby Day (May 9-12, 2011), and here’s the International Awareness Day facebook page where we can share all our ideas & plans. – D


Spring FM & CFS Self-Help Discussion Group Sign-Up Now

Officially, sign-up time for the Spring 2011 Introductory Self-Help Course at Bruce Campbell’s CFIDS & FM Self-Help website closed Monday March 14, but it doesn’t get going until March 21, so maybe you can still join. This is a wonderful email listserv discussion group where you get a self-management lesson every week, and discuss issues with other members and a patient moderator. There is also a free open-ended discussion group for graduates of the introductory group (with many loyal fans), and a free Self-Study Course for developing an individualized treatment plan, so be sure to check it all out here ( – ProHealth


Read About the Fatigue Trials Recruiting at Stanford

Hi, this was posted on the Whittemore Peterson Facebook page – a link to the Stanford Chronic Fatigue Initiative (, which is a research team headed by Dr. Jose G. Montoya, MD, a pioneer in antiviral research for treatment of ME/CFS and other chronic diseases at Stanford’s Infectious Disease Clinic in California. – A

[Note: For information on their current studies of possibly infection-associated chronic diseases, including links to participating researchers, go to]


Note: This information has not been reviewed by the FDA. It is anecdotal & generic 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.

1 Star2 Stars3 Stars4 Stars5 Stars (4 votes, average: 5.00 out of 5)

Leave a Reply