"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.

˙·٠•●♥ ᙬٱٱᙩ ♥●•٠·˙

Monday, October 11, 2010


A chronicle of documented CFS/ME suspected outbreaks since 1934

NOTE: The viewing performance of this on this website has degraded. It could be temporary, but.... I would click on the "Watch on Youtube" option on the bottom of the videa screen below for best performance.

˙·٠•●♥ ᙬٱٱᙩ ♥●•٠·˙

The UK ME/CFS Secret Files

"It is notable that two of the funders of the UK PACE Trial on "CFS/ME" (the MRC and the DWP) have separate secret files on ME/CFS held at the UK National Archives." Margaret Williams

"... the MRC files (Item reference FD 23/4553/1) containing records and correspondence covering the period 1988-1997, are closed for 73 years (ie.until January 2071):" Margaret Williams

Knowledge or Belief?

˙·٠•●♥ ᙬٱٱᙩ ♥●•٠·˙

The White House Chronicle

CFS: To Suffering, Add Anger

and here is a link to the PBS video:

WHC King interview with NIH

Thank you Llewellyn King, for a piece of journalism that represents us so well.  You describe our ME/CFS GWS symptoms and disabilities, and the CDC's fraudulent behaviours for the last 20+ years, with dead to rights precission.

This was written by King on September 21, 2010.

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

The Awful Disease Washington Forgot

And from Heidi and CFS Chronicles; her thoughts on his involvement. Thank you Heidi, I love your writing.

Llewellyn King Burst our Bubble

˙·٠•●♥ ᙬٱٱᙩ ♥●•٠·˙