Chronic Fatigue Syndrome (ME/CFS): A Force to Be Reckoned With Or More of the Same? Part I 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.
Click here to find out more about and/ how to contribute to the IACFS/ME capital funds campaign.
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