From Our Readers – Comments & Suggestions 03-30-11

DePaul’s Model Buddy Program Helps Isolated Patients, Trains Students

Re: “Volunteer Buddy Program in Chicago for Fibromyalgia, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity Patients”

If this system has been in place for a decade now – why are we just hearing about it? CFIDS research is so behind – but it seems to me the greater tragedy is that the few resources & helpful programs that are available aren’t made known to patients and/or advocates for years on end in most instances. Why is this? If I’d known something like this was in place in Chicago YEARS ago I’d have tried to get a similar program set up here in New England…. – G

Note: This article, and G’s comment, date back to 2007, but are still relevant. This Buddy Program, initiated by Dr. Lenny Jason, PhD, director of DePaul’s Center for Community Research, remains very active. If readers know of other such programs, please share the information with us. And for those interested in launching similar programs, the program leaders may provide helpful guidance (


CFS Advisory Committee to Meet May 10-11 in Washington

Reportedly Dr. Wanda K Jones (Designated Federal Officer for the CFSAC) made a special effort to see that the Dept. of Health & Human Services’ CFS Advisory Committee could meet in Washington just before May 12, International Awareness Day. The meeting will be webcasted live online, and patients/advocates who want to attend can make plans now, and those who want to contribute brief statements or testimony in person or by phone should submit a copy to before 5 pm Eastern Time, April 18. The full meeting announcement with links is at, and an agenda will be published at the CFSAC website ( before the meeting. – J


How to Be Sick Author Hosts Psychology Today ME/CFS Blog

Toni Bernhard, author of the recent book How to Be Sick:A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and who has been a long time member HERE on the ME/CFS & FM Message Board (altho you wouldn’t know it as she does not toot her own horn), now has a blog at Psychology Today (“Turning Straw Into Gold”)… – V


“Suffer in Silence No More” Patient Awareness Conference May 13-14 in Kansas

Have you gone from one doctor to another with little or no benefit? Then the 11 Annual Fibromyalgia Coalition International FM and ME/CFS Conference is for you. Fibromyalgia and Chronic Fatigue Syndrome sufferers and those who care for them will be gathering from all over the nation to share the latest holistic research & therapy insights in this special 2-day conference – Friday & Saturday, May 13 and 14 in Overland Park, Kansas. To read about this nonprofit organization, the conference, and the expert presentations that are scheduled, go to Topics include blended naturopathic/conventional medicine; the roles of chemicals and diet in inflammation & body pain; effectiveness of various physical therapies; dealing with “The Forgotten Hormones,” and more.

Fibromyalgia Coalition International

Note: Yvonne Keeny, executive director of the Coalition, suffered with fibromyalgia and chronic fatigue syndrome for over 13 years. With the help of a few holistic healthcare providers, she has been well since 1997. Her illness brought a special understanding and empathy for people with these illnesses, and the difficulties of day-to-day living. In 1998, Yvonne started a support group which led to the founding of the Fibromyalgia Coalition International. Under Yvonne’s leadership, the organization has helped thousands of FM/CFS sufferers seeking information and resources. She is also editor of the quarterly magazine, Fibromyalgia Alternative News.


‘Arthritis Handle’ for Cooking – Just What She’s Been Looking For

A young Australian fellow has invented an ingenious ‘arthritis handle’ (see that people with stiff, painful hands can use to safely lift hot or heavy pots, pans & dishes. It lets you use the strength of both forearms to lift & carry. (I’ve been looking for something like this for years, so can hardly wait till it’s available to buy. And just so we won’t feel like fuddy-duddies, he says he’s going to make sure that it will be available in fun colors like bright orange, yellow and green. – P


Coalition 4 ME/CFS Launched to Influence Public Policy

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


Visit the International Awareness Day Facebook, Everybody!

This is where everybody can network, exchange ideas, find out about activities and events – local and online. Get your buttons, pins & badges too. – W (International ME/CFS, FM & MCS Awareness Day Facebook, at – T


Protocol for Banishing Toxic Chemicals from New Clothes & Fabrics

Most new clothing and fabrics are permeated with toxic chemicals during manufacturing, which can be a real problem for people with Multiple Chemical Sensitivity. Ellen from Toronto, Canada, shares her decontamination protocol. See <a href="
“>“How to decontaminate new clothing and fabrics.”

The Canary Report (


Add Your Name to Advocates 4 Answers Signature List, Starting Friday

As part of global awareness month, please join Advocates 4 Answers and sign the Advocates for Neuroimmune Disease Awareness guest book. This includes illnesses that have no FDA approved biomarkers for treatments for the underlying causes of disease, including ME/CFS, FM, Autism, GWI , and chronic Lyme, to name a few. Not a fundraiser, just a record of names. [The site – – should be up and running by Friday, April 1]

Whittemore Peterson Institute


Explain How Pain Affects Your Life

The American Pain Foundation now has a Facebook page ( where pain patients, families and carers can exchange experiences and learn about many kinds of resources and activities to advance the understanding of chronic pain patients’ needs. I found pain-related links there ranging from The Bad Tummy Foundation to the National Mold Resource Center. – B


Tell Dr. Oz About ME/CFS Needs

Dr. Oz is asking people ages 25 to 35 to share their stories, topic requests health concerns, questions at Let’s contribute stories about ME/CFS & highlight our needs for physician education, research funding, etc. etc.


Vocational Rehab & Employment Program for Disabled Vets
The Vocational Rehabilitation and Employment VetSuccess Program is authorized by Congress under Title 38, Code of Federal Regulations, Chapter 31. It is sometimes referred to as the Chapter 31 program. The VetSuccess program assists Veterans with service-connected disabilities to prepare for, find, and keep suitable jobs. For Veterans with service-connected disabilities so severe that they cannot immediately consider work, VetSuccess offers services to improve their ability to live as independently as possible. Read more here (

US Department of Veterans Affairs


ME/CFS Australian Patient Advocacy Network

ME/CFS patient advocates Megan Poad and Sheila Ginnity have set up a new ME/CFS Australian Patient Advocacy Network. Their goals: “We seek to work in partnership with ME/CFS Australia, State ME/CFS Societies and our doctors. We will also work in alliance with other groups with similar aims or independently where appropriate. Strategies may include: approaching scientific and medical institutions, politicians, government officials, research funding bodies and education organisations; to use publicity and awareness campaigns that support our goals; to leverage the recent retroviral findings into ME/CFS.” Read more HERE.

ME/CFS Australia (SA) news (


Xymrem for FM Nixed by European Medicines Agency

The European Medicines Agency will not recommend Xyrem (sodium oxybate) for treatment of fibromyalgia syndrome in the EU in the near-term, according to an announcement made March 18. No medication has been approved in Europe to date for the treatment of fibromyalgia. Xyrem is currently approved in the EU for treatment of narcolepsy with cataplexy in adult patients, and in the US the FDA has approved Xyrem for narcolepsy treatment; but in August 2010 rejected the application by its maker, Jazz Pharmaceuticals, for approval to treat fibro. – A


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.

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