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Dr. William Reeves, head of the CDC's CFS research program from 1992-2010, passed away last night.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dr. William Reeves, head of the CDC's CFS research program from 1992-2010, passed away last night.
"He has often been viewed as disdainful of the suffering of people with CFS; we should not make the same mistake and be disdainful of the pain his family and friends must feel at his passing."
It's not a "mistake" to be honest about how you feel. Shaming people into pretending that they SHOULD feel something that they don't, on the other hand, is a bit manipulative and abusive.... especially when the people being shamed are sick with a debilitating disease that Reeves had the power to dismiss as a psychological condition.
IMO his ignorance and lack of compassion has earned him the disdain he deserves.
Reeves left a powerful legacy, and it is not a good one in my view.
I criticize his views and actions, but it's not my place to criticize him as a human being. That's all I was trying to say in my blog post.
this is my feeling; you can disagree but PLEASE DO NOT tell me how to feel or what i should or should not say abt this death.
The CFAA's view sickens me; yet they are free to share their opinion; it just further proves to ppl with this disease where they stand in their support of severely ill ppl who suffer with ME.
Did ACT UP or other AIDS patient support groups laud Ron Reagan when he died after he so thoroughly mishandled that disease.....were AIDS patients told how to act and speak after he died....no, I think not!!!!!!
The truth of Reeves treatment of ME and patients should never ever be forgotton!!!!!!
We have no idea what his family is feeling right now. I don't like these attempts to tell us what we should be allowed to express in a public forum. My opinion is that it does harm for us to be false. Those who judge us badly will do so regardless of how we act. They are acting in an unfair and illogical way - not us.