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CFSAC testimony

Sasha

Fine, thank you
Messages
17,863
Location
UK
There's no audio for those of us who can only watch online and so it's especially interesting to see the written testimony of some of the presenters.

@jspotila has just posted Terri Wilder's testimony on her blog - and it's pretty amazing.

Terri Wilder said:
Good Afternoon. My name is Terri Wilder and I’m a person living with ME.

I should tell you that I was only diagnosed about ten weeks ago so it feels strange for me to introduce myself to you this way as I typically introduce myself this way:

“Good Afternoon, I’m Terri Wilder and I’m an AIDS Activist and a member of ACT UP/NY.”

Yes, that ACT UP–the AIDS Coalition to Unleash Power. The infamous activist organization that shut down the FDA, demanded that the CDC change the definition of AIDS to include women specific illnesses, and stormed the NIH. If you worked in government for any length of time I’m fairly certain you have heard of ACT UP.

While I have only been diagnosed with ME for ten weeks, I can tell you that it didn’t take me very long to figure out that we are repeating history with ME. I have told multiple people that I’m having déjà vu. You see, I have been working in HIV since 1989....

Read the rest:

http://www.occupycfs.com/2016/05/18/cfsac-comments-terri-wilder/
 

A.B.

Senior Member
Messages
3,780
One of the reasons ACT UP was founded was because health officials, government researchers, medical bureaucrats, medical providers and pharmaceutical company executives believed they were the “AIDS experts” when in fact the experts were the people living with AIDS. The persons with AIDS points-of-view were made invisible and their real-world knowledge about the changes that needed to be made to end the crisis, was ignored.

That sounds oddly familiar.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK

Sasha

Fine, thank you
Messages
17,863
Location
UK
Testimony from Eileen Holderman:

Eileen Holderman said:
Good afternoon to the Advisory Committee Members and to all stakeholders listening.

My name is Eileen Holderman - I'm an advocate for ME, GWI and other neuroimmune diseases.

Recently, I served as consultant to MEadvocacy, an organization advocating on behalf of nearly 1 million American men, women and children suffering from Myalgic Encephalomyelitis (ME).

Specifically, I collaborated on their blogpost titled, "NIH Sidesteps Critical Problems with the ME/CFS Study," which is a detailed analysis of the numerous problems with the study design and protocol and which offers solutions to those problems. The organization has given their consent for me to talk about the blogpost.

The blogpost outlines many problems such as: multiple and ever-changing criteria - some which are deeply flawed, biased and/or inexperienced investigators and advisors such as Walitt, Gill, Saligan and Unger, additional problems with the study design such as a small cohort size, excluding patients who are most severely affected such as the homebound and bed bound, the use of Lyme Disease comparison groups which will cloud the results, the exclusion of the 2-day CPET testing for PENE, the refusal to release the specific budget for the study, the exclusion of ME experts when designing the study, and finally, the failure to set up a transparent, 2-way communication and participation process between NIH and the ME community (researchers, clinicians, advocates, patients, and caregivers) at every step of the way. ...

Read the rest at:

http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study