Phoenix Rising Joins Coalition of Non-profit ME/CFS Organizations to Produce Change

March 16, 2011

Posted by Cort Johnson

Phoenix Rising is proud to join the Coalition 4 ME/CFS. Every member of the Phoenix Rising Board of Directors has had ME/CFS for over ten years and we are all personally aware of its costs.

A recent letter one of our Board Members, Pat Sonnett, wrote to Amy Dockser Marcus of the Wall Street Journal, summed up the feelings for all of us.

Coalition 4 ME/CFS“Amy, thanks once again for covering the story of ME/CFS. I firmly believe that much of the patient anger and frustration we’re witnessing now is justified and is a direct result of decades of denial, ridicule, neglect and malfeasance on the part of our government health agencies whose responsibility has been to investigate this illness properly. Even now, the research dollars allotted to ME/CFS amounts to less than $6 per patient per year, a paltry sum by anyone’s standards.

I have had ME/CFS for 25 years and had to suffer the horrendous effects of this illness because of this injustice.

I think we have every right to be angry and demand that those responsible for these reprehensible actions (or inactions!) be held accountable and that more of our tax dollars be spent on researching this devastating illness which continues to claim more lives every single day. We’ve “played by the rules” for years while we’ve watched what little remnants remained of our lives slip away. We’re not going to fade away silently into the night. The real story has to be told even if it means shouting it from the rooftops. We’re not going to allow another generation to suffer this fate without doing everything we possibly can to make sure our collective voices are finally heard.”

Coalitions spring up when interested parties understand that alone they have no chance of prevailing against a stronger foe. In 1776 the colonies banded together out of necessity to fight the strongest military in the world for independence – and won. Our foe is different but we face the same kind of entrenched, disdainful, belittling attitudes in the medical community that the colonists faced in the English Parliament over 200 years ago, and like them we believe we have certain inalienable rights that have been abridged, two of the most important being access to adequate medical care and appropriate levels of medical research.

When we were invited to join a Coalition of non-profits to work on these issues we jumped at the chance.

If Not Now, When? If Not You, Who?

We believe the interest generated by the discovery of XMRV has provided a unique opportunity to produce results and we see, alongside the problems, new possibilities emerging. We see a new leader, Dennis Mangan, overturning decades of lethargy at the NIH; a researcher at Stanford University, Dr. Montoya, lecturing his colleagues on their dismissal of CFS and publicly dreaming of the day the medical community produces a formal apology to the patients for not believing them, and a CDC Chief who has agreed to meet with patient representatives for the first time in memory.

We see the first ‘Center of Excellence’ for CFS and a patient clinic that dwarfs any others in size, innovation and ambition opening at the WPI shortly. We see the same type of collaborative efforts that have produced breakthroughs in other diseases being developed at the CFIDS Biobank and Research Initiative. We see Lasker Award winners on the federal advisory panel for CFS, and a Chronic Infectious Disease Initiative featuring ME/CFS at Stanford. In short we see more and more people being willing to stand up and say “Count us in in the search for the cause of ME/CFS”.

We look forward to working with these individuals and others during this time of opportunity and change to produce meaningful results for the ME/CFS community.

There is a tide in the affairs of men.
Which, taken at the flood, leads on to fortune;
< Omitted, all the voyage of their life
Is bound in shallows and in miseries.
On such a full sea are we now afloat,
And we must take the current when it serves,
Or lose our ventures.

William Shakespeare

Visit the Coalition 4 ME/CFS website and Facebook Site

The Coalition 4 ME/CFS includes

  • Chronic Fatigue Syndrome/ Fibromyalgia Organization of Georgia, Inc.,
  • CFS Knowledge Center,
  • CFS Solutions of West Michigan,
  • PANDORA, Inc. (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc.),
  • Phoenix Rising,
  • Wisconsin ME/CFS Association, Inc,.
  • Vermont CFIDS Association, Inc.
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