"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Sunday, October 31, 2010

Failure to Thrive's Last Post

I started this blog when I learned about XMRV, The Whittemore-Peterson Institute, and the XMRV connection to CFS/ME.

I felt the need to chronicle the critical events that followed since October 9, 2009.

I wanted to create a space where anyone could learn at their own pace what XMRV could mean to them.

I wanted to hold the CDC accountable for their actions since 1984+, when they changed the language and the definition of what CFS is.  I wanted to illuminate that their intentions in re-defining CFS in 1985, by leaving out the meaningful and evidence proven neuro-immune diagnostic markers, was to categorize CFS as a psychological disorder, so the insurance industry could exclude all CFS and Fibromyalgia from receiving disability benefits, in order to save them billions of dollars.

I wanted this blog to be a source for knowledge, links and evidence that CDC has brilliantly, intentionally and effectively dismissed CFS/ME for 20+ years, and that due to their negligence, they may be responsible for a neuro-immune epidemic in the U.S., that never had to happen.

We are still in the early stages of coming to terms of what the parthenogenesis of XMRV means to us all, and to our children. We need federal grants now to the WPI, to help us find out. And if the NIH cannot see fit to approve grants to the WPI, then we all need to donate to the WPI. They have the evidence and the knowledge required to use the funding appropriately.


We also need federal ARV XMRV clinical trials Now.

We want to be heard. We want to save others what we have endured for the last 25+ years. We Have to hold the CDC accountable for their past actions, and their present (and might I say 'deliberate') incompetence. Isn't the deafening roar of affirmative studies from the National Cancer Institute, the Cleveland Clinic, the NIH and the FDA enough for the CDC to understand that the issue is theirs' alone in producing negative findings of XMRV's association with CFS/ME?

We have moved on to learning about the pathogenesis of XMRV, while the CDC and the UK still defend their incompetent dogma to their deaths.

We do not need the CDC's opinions anymore in face of the truth. We are leaving them behind. They are still talking, we are just not engaging them anymore. That is, until we see them charged with "Reverse-Fictitious Disorder by Proxy" for turning an infectious neuro-immune epidemic into a fictitious psychological 'syndrome', that has put this generation, and our childrens generations at risk, and possibly in peril.

This blog is here, and will stay here for friends and family.

I invite others with XMRV+, and/or members of their families with XMRV to contact me with emails.

 Much love to you all, from a XMRV+ CFS/ME sufferer since 1993.

~ toadlily

NOTE: I am keeping the Advocacy page current. Feel free to visit the links there. They are a godsend of current information.

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1 comment:

  1. Thank you for all your efforts on our behalf I have had ME/CFS for 15yrs.....please take care.....