Monday, July 13, 2009

Great collection of links & info

Thank you again, Kathryn Stephens, for posing the question!

It has been a stunning spring for the CFS and ME communities. I hesitate to say either ME/CFS or CFS/ME or CFIDS or any other variation or combination of these two anacronyms. There are several political connotations to consider when talking about this disease, and it would pay to find out why. The politics that drive the name confusion are the same politics that have kept you, personally, from getting research into your disease and potentially a cure.

So here's a review. It's basic, and only hit's the highlights. But it is worthwhile to familiarize yourself with some of these events at the very least, and hopefully follow up with further reading and perhaps some participation in the politics that affect your life. Not everyone can do much. But every voice counts, and in order to educate the public, we must first educate ourselves!

Much of this information can be found in multiple places on the web, but I tried to give links where you do not have to be a member to be able to read.

The first step, I think, would be to read Hillary Johnson's fantastic blog, which is a copy of a speech she gave in May of this year in London. This is out of sequence, but in order to understand the import of the rest of what is happening, it is an excellent educational tool. In the speech, she outlines the political malfeasance that has affected us here in the states, and abroad. For those of you who are not familiar with the name Hillary Johnson, she is the author of Osler's Web, a detailed chronicle of how CFS came to be.

Her blog is at:

Now, for a mini-history of the events of this spring:

1. In March, the IACFS/ME conference was held in Reno, NV. The IACFS/ME is a unique organization and one that is very important to us, medically and politically. It is an international organization of 500 biomedical and behavioral scientists, clinicians, and educators that promotes, stimulates and coordinates the exchange of ideas about CFS and related illnesses". The fact that this conference was held in Reno was a sort of "coming home" for Dr. Daniel Peterson, who has been involved in CFS research from the beginning, as one of the two doctors who called the CDC out to Incline Village in the first place back in the 80's. Dr. Peterson has established the Whittemore Peterson Institute in Nevada, and still maintains the blood and tissue samples from the original cohort, the people for whom CFS was so infamously named.

Dr Charles Lapp's summary can be seen here:

Dr. Ritchie Shoemaker made a brilliant presentation at the same conference, tying mold in with CFS. Thanks to Erik, we heard it here first:

2. May 12 was International ME/CFS awareness day. On that very day, Dr. Derek Enlander made the announcement that he was starting a new journal called "Fatigue". This announcement split advocacy groups, as some were outraged at the choice of the name after fighting for a quarter of a century against all of the suffering that the connotations of that word has caused, and at the announcement of such a journal on the day set aside to bring awareness to the world. Other advocates were suddenly tolerant of the word since the word was being used by CFS experts. To read more, see:

And Dr. Enlander's response here:

3. Also in May, the CFSAC advisory committee met with the CDC. We, the sick,were invited to testify. We were also invited to testify by phone if we could not make it in person. This invitation was not extended until the meeting was almost upon us, as an afterthought and no doubt in response to pressure for the advocacy groups. Also, historically, the meetings were videocast so all of us at home could watch them live. This was due to some very hard work and advocacy done by Jean Harrison and here group at MAME.

Some of the testimonies given:

Watch the videos:

(It is important to watch them! If not enough people do, they probably will not video further conferences).

Dr. Bill Reeves' presentation and what it means to you:

IACFS/ME president's call for the replacement of Bill Reeves:

Craig Maupin's recap of why this is SUCH a time of opportunity:

4. On the heels of the CFSAC meeting, Dr. Kenny De Meirleir gave a press conference where he announced a home test for diagnosis of CFS. Read about it here:

5. The Invest In ME conference in London was held. Hillary Johnson gave a remarkable speech, which I already referenced at the beginning of this post. Here it is again, just in case:

John Anderson's followup to Hillary's blog was brilliantly crafted. It can be found here:


Ampligen has come up for approval by the FDA, and has been postponed yet again. This has been going on for 10 years:

A mother has been charged for murder in the death of her daughter, who had ME. ME support groups are trying to step in with support funds and dissimination of information.

A petition to stop the CDC from using the "Reeves empirical" to define CFS has been in existence since April. It is still critical to get signatures on this.

The Whittemore Peterson Institute is a beacon of scientific research, and Annette Whittemore has a goal to start 5 total such institutes. Read more at:

PANDORA, another important advocacy group, is trying to get an "Advocates Extraordinaire" program going for those of us who are extreme advocates:

For those who cannot do much but are wishing to at least have a say, there is a very simple poll. Do you think Reeves should be replaced..yes no or maybe?

Dr. Daniel Peterson's presentation at REM Goteborg (Swedish ME Patient organization)

There is ever so much more. I'm hoping this will give you a place to start.

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