Sunday, June 14, 2009

American Advocacy

Although John Anderson undoubtedly meant well in his Co-Cure editorial about
American ME/CFS advocacy, it painted a very inaccurate picture of the ME/CFS
advocacy that has transpired in the United States over the past two plus

My suspicion is that the problem lies not in any intention to convey an
inaccurate picture, but rather a possible lack of in depth awareness of our
history. If so it illuminates the importance of our history being chronicled
in detail.

Hillary Johnson gives very powerful presentations on the epic story of ME/CFS,
but such presentations are exceedingly limited by the time allowed.

For those who wish to gain a better picture of what has come before I
recommend reading her book. Just keep in mind that as with her presentations,
there were limitations in how much could be included in her book. To cover the
full breadth of our history and the important efforts of individuals such a
chronicle would have to be many volumes.

To be fair to Hillary, she has done a good job in chronicling many of the most
important details. To capture more would take far more work than any one
individual could commit; it would take a Wikipedia of sorts with many people
inputting and verifying information.

Over the past 2+ decades a great many here in the US have worked immensely
hard trying to influence improved research and clinical care for patients,
better disability benefits and service, getting increased support from our
elected government officials, trying to bring about both better and more media
coverage, increasing public understanding of the illness, establishing support
services for patients, strengthening our organization and creating new ones...
The list goes on.

There has been a full spectrum of kinds and sizes of advocacy organizations,
each in their own way trying to make a difference. Some have been very
impressive in the work they have conducted. A few have been less than stellar
in the views they have held and the way they have conducted themselves. And
some have transformed over the years or dropped off the radar screen entirely.

Advocacy organizations are only the tip of the iceberg in terms of the
advocacy work and provision of services that have taken place here. It is safe
to say that just as much important work and sometimes more important work has
been conducted by independent advocates and proactive patients.

Though such people tend to be less noticeable in the national and
international stage, such people have been the boots on the ground, the fuel
of the inertia we having been trying to build for 2+ decades. They have been
the true heart and soul of all our efforts.

Some have worked tirelessly conducting political advocacy, creating various
kinds of support services for fellow patients, writing books, articles and
letters about the illness, testify at meetings, disseminating information in
many forms... Again the list goes on.

People contribute in their own ways and within the limitations of abilities,
but all deserve recognition for their efforts.

Success and lack there of in achieving progress, obtaining our end goals, is
not entirely or in some cases at all a reflection of the efforts that have
been made. Sometimes slow headway or lack of progress is more of a reflection
of the enormity or power of what we are up against. In such cases it is a
mistake to blame the people who have been trying to move progress ahead. They
do not deserve to have their efforts minimized because their efforts have not
achieved more; we are all in this together.

As long as we allow ourselves to be factionalized into different and sometimes
contentious groups, whether it be due to somewhat differing views,
nationality, the name of the illness, etc, we are not going to achieve our
full potential. We need to work together on our commonalities.

John Herd

* * *
I agree with John, as one of the unnoticed activists who works more behind the scenes than in front of the footlights. 
Due to distance, I don't make it to the big meetings at CFSAC and CDC.  This year was my first official CFS conference.  But I'm blogging, I'm e-mailing, I'm writing letters, I'm at local political events handing out brochures, and I have the website.  I may not be making headlines, but I'm getting the word out to a lot of people who think that "all CFS patients are bedridden" or "all CFS patients are simply depressed" or "all CFS patients are simply lazy".
I had a boss who thought CFS patients were just too lazy to work.  After proving to him that I definitely wasn't lazy, I revealed that I have CFS.  He stammered around a bit, but it was obvious that having seen for himself that I came to work sick, I'd just changed his mind about what CFS is -- it's something that affects a hard worker's immunity so that she catches every little thing that comes down the pike.

The fact that I'm not getting my face on TV or my name in the newspaper for my CFS work doesn't mean I'm not effective.  I belong to a number of non-CFS e-groups, some of them quite large.  Rough estimate, allowing for people coming in and out of groups, that's 20-25,000 people who've heard my story, who know that despite the challenges posed by CFS, I'm running a couple businesses -- people who are faking a disability to avoid working aren't going to start businesses.  Some of them have heard for 10 years the various ways that this affects me; neurological problems that can't be written off to laziness or depression.  I know I've made a difference, because in each group, I've had people ask for information/advice. 
I have a sizeable audience; it just isn't the sort that registers on Nielsen's media reports or John Anderson's radar.

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