Monday, May 09, 2005

Silent Tragedy of 800,000 Victims -- The Invisible Hostages.

Here is a copy of a report via 05-04-2005 entitled "The Nightingale Sings: About CFS/ME Advocacy" by John Herd:

One afternoon, I heard something about the nightingale that inspired me to want to write an article about advocacy. But first I wanted to create a picture of a bird flying so I went to the Internet for ideas. My Google search for a bird on wing lead me to the logo of the Shepard Symposium on Social Justice.

Seeing the words "social justice" really ignited my curiosity because social justice is so much of what our ME/CFS advocacy is all about - getting those afflicted with ME/CFS the resources and health care they need, getting enough physiologic research conducted to find a cause and effective treatments, and teaching the public about the truths of the illness.

I sent a request for more information to the symposium organizers, along with an article I'd written about ME/CFS so they'd understand why I was interested. The name of that article was, "Silent Tragedy of 800,000 Victims -- The Invisible Hostages." Much to my surprise I received an invitation to submit the article and to come speak at their upcoming national conference.

Clearly this was an opportunity to get our message out to a receptive and very different segment of the public. There was a problem though - I couldn't afford to go and sent out a call for assistance. What came next was a shock to me. Though some of our leading organizations remained silent, patients and a number of ME/CFS organizations began offering to help. In light of the apparent loss of national advocacy momentum, leadership and little cooperative interaction amongst many of our organizations I did not expect this.

Pat Fero, president of the Wisconsin CFS Association lead the way with assistance on gathering needed ME/CFS information, a very generous donation, contacting other groups about possible contributions and booking reservations. She was the apex of what made it possible for me to speak on behalf of all patients. The New Jersey CFS soon followed, also with a generous contribution. Then ProHealth (, Marla McKibben of PANDORA in Florida and two patients did the same.

Christine Hunter of the Alison Hunter Memorial Foundation in Australia provides an excellent video tape about ME/CFS and the horrific impact on adolescents for the conference. And both Alison Petty from and Corina Duyn, a very inspirational artist from Ireland, provide pictures for use in my presentation.

There was one more hurdle to get over though. I had to be able to get my PowerPoint slide presentation to Wyoming where the conference was taking place. The HHV-6 Foundation loaned me a notebook computer as well as providing instruction on how to use it. And last but by no means least, Claudia from the CFS/FM Association of Georgia made me two back-up CDs of the presentation just incase all else failed.

What transpired is exemplary of ME/CFS advocacy at its best. It was more than people helping people. It was participative solidarity -- cooperation making the sum far greater than its individual parts. Though the voice speaking in Wyoming may have been mine, the message behind the voice belonged to all those who helped me and all those afflicted with ME/CFS.

When we speak about the illness, as soon as the name CFS is mentioned we run head on into people's preconceptions, negative biases. For the presentation I tried doing an end run around the preconception and bias problem.

Before mentioning the name of illness I provided medical information of quantified physiology, descriptions of how ill people are and other very human aspects of patients' experiences. Clearly from people's expressions the message was having an impact. It was only then, half way through the presentation, that I mentioned the name CFS. Feedback after the presentation was very encouraging. People made comments like, "I didn't realize that..." and then shared their misconceptions with me. Their views of CFS and those afflicted had been changed. It convinced me the public, even those who are skeptical about the severity of the illness, will be receptive to the message if it is conveyed effectively.

Part of that effectiveness is taking the gloves off -- hitting them with not just solid medical information but the hard to hear personal stories of human suffering. And that too worked in the presentation. Throughout the rest of the conference people came up to me saying things about how powerful the presentation was. Next time they meet someone who has ME/CFS they will probably have a very different reaction than if they had not heard the presentation.

Now back to the nightingale. Supposedly, if a baby nightingale is raised in seclusion, away from other nightingales it will never sing. But if it is later reunited with other nightingales it will begin singing as if it had been singing all of its life. That to me is a perfect metaphor for what our advocacy and support efforts are meant to be about -- what they are about on a grassroots level. We come together and learn from one another. We learn information that may help us get better treatment. We learn to advocate for ourselves and for the illness. And possibly most important, we find ways to embrace the sweetness in life despite our tremendous hardships. Somehow we need to harmonize all our voices into a broad national choir.

During the presentation one person appeared particularly attentive to what I was saying. It turned out she has had ME/CFS much of her life and had to cope with what resources she had. She had never met another person who has ME/CFS and never connected with on-line ME/CFS information resources or organizations.

Despite there likely being over 8,000 people afflicted with ME/CFS in Wyoming, there are no ME/CFS support groups there to direct people to information or medical resources. It's clear our organizations, the health department and the medical community have failed to get needed information to those who most desperately need it. There could be over 600,000 people in the US alone who have not reaped the benefits of up to date ME/CFS medical information, understanding support or adequate medical care. Given that the CDC has found in its studies that 85% of those afflicted have not even been previously diagnosed, the untold stories of those who have similarly suffered on their own is a tragedy of cataclysmic proportion.

When I returned home from Wyoming I received a letter from the woman. She wrote, "I don't think I let you know how much your presentation meant to me. I cried hard all the way home. It's as if I was suddenly freed from a cage." She later added that she was starting to think very differently about herself and how she copes with various aspects of having the illness.

The nightingale sings!

Copyright John Herd, 2005, all rights reserved. Author's email:


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