Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Wednesday, September 2, 2009


You are aware that P.A.N.D.O.R.A. the patient advocacy organization I represent embraces the concept of neuroendocrineimmune disorders. But today I want to specifically target one of these illnesses – Chronic Fatigue Syndrome or ME, as it is known in Europe and other countries.

The reasons why I am highlighting CFS-ME is simply because of the major historical opportunity that is being augmented by the upcoming CFS Advisory Committee (CFSAC) October 2009 meeting at the Department of Health and Human Services (DHHS) headquarters in Washington DC. You may or not be aware but at the May 27-28 meeting, a historical set of events occurred – The CFSAC gave a “thumbs down” to the current Centers for Disease Control and Prevention (CDC) leadership in charge of the CFS scientific research and public education programs.

This move was expressed quite well on their number one recommendation: ”Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.” You can click here to read the full set of recommendations at that meeting.

I say again historical, because the IACFS-ME Association also gave a “thumbs down” to the CDC leadership, followed by the CFIDS Association of America, Inc, one of the largest CFS patient advocacy groups in the U.S. Never ever have I been told, (and since I was diagnosed with CFS-ME in 1998 – a mere 11 years compared to many who have had this diagnosis for 25-35 years), have these major players agreed in something so fundamental.

It does not escape from us either, that the CDC stakeholder’s meeting held on April 2009 generated a barrage of other organizations and individuals stating their “thumbs down” for the 25-30 year performance of the CFS research & public education programs at the CDC as well. I represented P.A.N.D.O.R.A. by delivering a short presentation (later expanded) of our concerns based on the requested input outline. Many other individuals, and astutely so, saw the opportunity to also deliver a scathing message to the decision maker officials at the CDC that the current CFS program has not had for a long time, the support, the trust and the much needed vote of confidence of the patient advocacy community. Now, as it seems, the CDC does not have the crucial vote of confidence either from the scientific and medical community as well.

After reading John Herd’s latest blog on me-cfscommunity.com, I decided to postpone today’s original posting for a later day. Instead I decided to write about this important issue and about some other ideas that have been brewing on my CFS-ME-FM brain: how to create a social public awareness event that would mobilize our nationwide community if not worldwide, raise funds, generate media interest, touch the heart of lawmakers and just as importantly, reach the decision makers at the Department of Health and Human Services (DHHS) and at the Centers for Disease Control and Prevention (CDC).

While I will not engage in personal attacks, nor demonize individuals whom I have had the opportunity to meet and I have learned to respect, I do too believe IT IS TIME FOR CHANGE. It is time for a significant change to be made by the decisions makers at the CDC so CFS research can be progressive and yield better and greater results. It is time for the CDC to take its losses, re-organize, re-vamp and move on! For far too long the CFS-ME patient community has been suffering greatly.

But how do we convey this strong message? One idea that came to my mind was inspired by Joshua Tabb who blogs for The Case Foundation. Joshua shared on his blog article Learn the Lingo: F is for flash mob, mobilizing your mob. So the idea is to do something that is related to our community of suffering that will create awareness to the plight of millions of Americans and many other millions worldwide. What it would be? Folks wearing a t-shirt saying IT IS TIME FOR CHANGE with a pretty logo and lying down in nearby mall? How about wearing a mask and freezing for a flash moment? How about doing a line dance? How about holding hands? Perhaps we should all carry letters that at a signal, we would raise them to read IT IS TIME FOR CHANGE or to read One Community, One Voice, One Cause. But the key point of "flash your mob" is to create a moment in time a very short time (5 minutes or so) that occurs peacefully, quietly, but leaves an indelible mark in the public & government consciousness.

So I guess all I have to say now, is that I may not know much,but this much I instinctively know... IT IS TIME FOR CHANGE. I think you will agree.


Debbie Anderson said...

You are absolutely correct...it is time for a change...its time to go from being an invisible to being a recognized and validated illness...no one is going to do it for us....we must find a way to make that change ourselves

Unknown said...

Hi Debbie,
We need to harness our voices. Please spread the word about the CFSAC meeting on Oct 28-29. Please participate in a preliminary poll that I have on this blog.It is not a scientific poll but we wanted to get a preliminary take on the issues asked.

TKno2 said...

(Marly will know about this but other people may not)

One thing that people can do is sign a petition to complain about the CDC definition - read
http://CFSdefinitionpetition.notlong.com for more details. Just shy of 1500 at the moment but it's really dried up recently.

Cort Johnson has set up a group to make plans for the CFSAC meeting Go to: http://forums.aboutmecfs.org/group.php?groupid=4
for more details.