Friday, April 8, 2011

Breaking the Ice Jam - Pat Fero and Mary Schweitzer






I attended the two-day NIH conference this week. This conference was available to the public at large through a video cast. I will write a few impressions of the conference another time. For now I want to write about the most extraordinary and significant moment of this conference - the two presentations by Pat Fero and Mary Schweitzer. These two women were selected by Dr Dennis Mangan to represent ME/CFS patients on the NIH organizing committee. They were chosen from a list of suggestions from the ME/CFS community. Dr Mangan could not have made a better choice. Those who suffer from this illness could have had no better representation than these two provided. Both Pat and Mary, in their different ways, made articulate stirringly emotional statements about this illness. There was no mealy mouth here. I cannot wait to watch these presentations again, as these were powerfully gripping moments. (These videos are in several parts on youtube.)

In the presence of these two women I feel humbled and inadequate. These women are the real deal, an embodiment of an individual’s rising up and out of the most difficult situation. I repeat: no one could have done a better job of speaking for those of us affected by this illness.

During the presentations, the emotion in the room ran very high. It was an astonishing moment in time. If anything could break the ice with the NIH, it would be the testimonies of these two women. Anyone listening would have to have a heart of stone to not resonate to these women’s words.

8 comments:

  1. I know Mary and Pat. They are the most dedicated advocates I have ever met. I don't know how they can get up to those meetings and cram so much into a scant 7 minutes that they are allowed to speak. God bless them!

    Keep up the good work, Chris, we old folks who are 20++ years into ME/CFS need new people to keep the pressure on.

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  2. Thanks PA for describing how I feel a lot better than I could describe it. Thanks to both Mary and Pat and to Bob Miller for his moving testimony. 3 for 3, now if only they listen and act!

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  3. I also thought that Bob Miller's testimony was truly captivating.

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  4. Wonderful presentation. Thanks Mary, Pat, Bob and Chris!

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  5. The presentations have been the same for decades. The stories have all been nearly identical (other than those who are too sick to travel and have no family support or resources to get treatments from experts; we do not hear those). They have all been moving, emotional and heartfelt.
    Everyone acts concerned. This is really no different.

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  6. I agree with the poster above. I was really discouraged. There was very little that was any different than anything that could have been said in 1995 or 1988. They still can't even agree on a definition or who has the disease and who doesn't. There were a few bright spots but until we have a definition and agreement on has this and who doesn't I feel we're still wandering in the wilderness. At least differentiate the clinical definition from the research definition. And make sure that the research definition can't include random tired people from the Georgia and Kansas phone books.

    But I did enjoy the testimony of Mary, Pat and Bob. Kudos to them for the effort it took to prepare and make their presentations. The problem is that the bureaucrats and scientists - like Coffin - don't really care and the people like Klimas know the situation all too well.

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  7. Coffin's surname is highly appropriate in this instance.

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  8. Dear PA, your hard work in attending and reporting is much appreciated. My daughter also is ravaged by this illness, for 22years now. To the NIH ,CDC, and other US Govt trickle-downs who don't deliver the help so needed by the large group of suffering Humans that we are: I am trying very hard not to wish this disease on those of you who might really deserve it, so your thick heads can become cleared.

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