Opportunity Knocks for CFS

A Force to Be Reckoned With Or Not?  

Part I By Cort Johnson

(For the website version http://phoenix-cfs.org/EdOpporKnks.html ) 

“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 supporting these organizations fully chronic fatigue syndrome (ME/CFS)
patients have left their fates up to a national medical agenda that has no room
for chronic fatigue syndrome. 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. 

To contribute to the IACFS/ME capital funds campaign. 
http://www.iacfsme.org/ 
 
To join the IACFS/ME
http://www.iacfsme.org/MembershipOptions/tabid/211/Default.aspx

To contribute to the CFIDS Association of America‘s Research
Initiative.
http://www.cfids.org/about/accelerateCFSresearch.asp   

To become a member of the CAA
http://www.cfids.org/support/membership.asp 

Even better become a member of the Chairman’s Circle and get
on the monthly payment plan https://secure.cfids.org/TheChairmansCircle/tabid/84/Default.aspx

  Cort Johnson