Phoenix Rising: A Chronic Fatigue Syndrome (ME/CFS) Newsletter (August 2008)

Phoenix Rising: A Chronic Fatigue Syndrome (ME/CFS) Newsletter (August 2008)

May Day! The Feds and ME/CFS: the Congressional Briefing, Lobby Day and the CFSAC Meeting

By Cort Johnson

Chronic Fatigue Syndrome (ME/CFS) News

Overview of MERUK’s New Horizon’s 2-day ME/CFS Conference – Meruk has posted some excellent overviews of the recent big 2-day ME/CFS conference in London

The MERUK Health Care Professional DVD Package – Have a copy of the 4 DVD set of the International MERUK Conference on ME/CFS Biomedical Research sent to your health care professional or medical library free with a cover letter from MERUK. (May only apply to UK residents?)

Dorothy Walls Reviews ‘Insomniac’- One of our foremost ME/CFS authors finds a book she really likes. Check it out.

Fibromyalgia and Sleep Disorders Scientific Conference Sponsored by the National Fibromyalgia Association, Oct. 2-4th, Portland, Oregon – A two day conference on sleep coming up

Ashok Gupta’s Amygdala Retraining Course – You can now view the first couple of sessions of Ashok Gupta’s Amygdala Retraining Course free.

Dr. Charles Lapp on Why Some Chronic Fatigue Syndrome Patients Do Not Get Better – Check out this new article on Bruce Campbell’s CFIDS and Fibromyalgia Self Help Program website.

Help PANDORA Build a Neuroendocrine Research Center – Help PANDORA win a contest that will bring them a share of $2.5 million dollars for a Research Center. Click on their Members Project box on their home page for more.

Elly Brosius Gratitude Group – check out Elly Brosius Gratitude Group in Virginia for a surprisingly effective way at turning down some of the symptoms of ME/CFS. I, for one, am grateful Elly came up with this idea.

Biological Differences Between CFS and Depression
– a very nice overview of chronic fatigue syndrome research thats well-tailored for a medical professional. Consider sending it to your doctor.

Pregnancy and Chronic Fatigue Syndrome (ME/CFS) – An excellent guide to pregnancy and ME/CFS from Prohealth.

Christmas Cards - Get ready for the holidays and support ME/CFS research with Christmas cards from one of the top ME research and support organizations, MERUK (ME research UK).
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A Force to Be Reckoned With Or More of the Same?
An Editorial by Cort Johnson

“In recent years there has been, in my opinion, an apathy that has crept in and pervaded some parts of the support community. Perhaps it has been due to ill health, perhaps the patient community is giving up, discouraged by a perceived lack of progress but whatever the reason, people need to remember that nearly everything good that has come to patients with [M.E.] CFS has come via the support community.”

Dr. David Bell.

Opportunities Knock . Two powerful opportunities to make a difference in this disease have appeared recently.

  • The IACFS/ME is attempting to hire an Executive Director – their first full-time paid staffer -.
  • The CFIDS Association of America began a million dollar research initiative that would quadruple their research effort.

Both organizations have taken bold strides recently.

Dynamic Leadership. Under Dr. Nancy Klimas’s leadership, the International Association of CFS/ME (IACFS/ME), has created the first Pediatric Definition of ME/CFS and is working on producing a new journal and creating treatment guidelines for ME/CFS. The last, a consensus document produced by top ME/CFS physicians, presents a tremendous opportunity for both physician and patient education. If you’re looking for an alternative to the CDC’s health tips for ME/CFS here it is.

A Bold Move. With the hiring of Dr. Suzanne Vernon and the announcement of their million dollar research initiative the CFIDS Association of America made a bold thrust to quadruple their research funding, build an active research network, and advocate more effectively in the halls of government. All these are vitally needed at a time when federal research funding for ME/CFS is reaching new lows.

Small Organizations – Big Plans. Both groups are small given the needs of the ME/CFS community; the IACFS/ME is entirely volunteer run by already overworked physicians and researchers. The CFIDS Association of America advocates on the federal level, runs a media campaign, provides physician education programs, publishes an informative monthly e-link newsletter, does outreach to local support groups, publishes the Chronicle, maintains its large website and funds research all on a staff of fourteen.
These projects have the potential to give ME/CFS patients stronger, more effective voices.
But will they respond?

A Force to Be Reckoned With? Or More of the Same? With 200,000 diagnosed ME/CFS patients in the U.S. we have the ability to build powerful, influential organizations. We have the numbers, for instance, to tell the federal government that spending peanuts on a disease that affects 4 million American’s is not acceptable! But we’re not.

Cattle Cars or A Run For It? Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.

Strong words ,yes, but with only 2-4% of diagnosed ME/CFS patients actually contributing to their national organizations they resonate. By not fully supporting these organizations chronic fatigue syndrome (ME/CFS) patients have left their fates up to a national medical agenda that has no place for them. They’ve ceded their power to government officials who have time and time again demonstrated they have no interest in ME/CFS. Whatever anyone’s justification for not supporting these organizations the result is the same – a loss of power – and an enfeeblement in an environment which is hostile to our interests.

We desperately need to build these organizations into powerful partners that can make a difference at the highest levels. Sick patients working by themselves can’t do that but they can provide the resources professional organizations need to make a difference. Let’s start with these projects – let’s make a run for it.

IACFS/ME

Click here to find out more about and/ how to contribute to the IACFS/ME capital funds campaign.
Click here to join the IACFS/ME

CFIDS Association of America

Click here to contribute to the CFIDS Association of America’s Research Initiative.
Click here to become a member of the CAA.
Even better click here to become a member of the Chairman’s Circle and get on the monthly payment plan.

Congressional Briefing/Lobby Day – Check out the first Congressional Briefing for Chronic Fatigue Syndrome in almost ten years and the Lobbying efforts that followed The briefing put on by the CFIDS Association of America was a blast, ending with a stunning presentation by none other than the voice of NPR’s Weekend Edition Scott Simon speaking for Lauren Hillenbrandt. We followed that up with a small Lobby Day that focused on putting pressure on the CDC and getting language inserted into a Congressional Apppropriations bill calling for the government to step up its efforts in many areas. Click here to check out the briefing (pictures included).

The Federal Advisory Committee on CFS Meeting – These meetings are always packed with interesting topics and this was no different. Among the topics covered in this short overview are

  • Bumping Heads: the CFIDS Association of America and the Centers for Disease Control
  • A Fellowship for ME/CFS?
  • Cracking the National Institutes of Health – They Have a Plan
  • Tip-Toeing Through the Minefield – The Research Initiative
  • Exercise Studies Paying Off for ME/CFS

Click here to check out the CFSAC overview.

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