CFSAC June 2012: Patient/similar Testimony (oral/written)

Dolphin

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Janelle Wiley will be giving her oral CFSAC testimony tomorrow (Wednesday), sometime between 3:30pm and 4:30pm (Eastern Time).
She will talk about the ME Analysis project she was heavily involved with: http://evaluatingpace.phoenixrising.me/homepageanim.html . Some other members of Phoenix Rising have also been involved in the projected.
She also talks about the paper:

Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Free at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
 

Dolphin

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Janelle Wiley will be giving her oral CFSAC testimony tomorrow (Wednesday), sometime between 3:30pm and 4:30pm (Eastern Time).
She will talk about the ME Analysis project she was heavily involved with: http://evaluatingpace.phoenixrising.me/homepageanim.html . Some other members of Phoenix Rising have also been involved in the projected.
She also talks about the paper:
Janelle's testimony can be read in full, complete with two images at: http://forums.phoenixrising.me/index.php?pages/CoveritLive1/
Just scroll down to: 4:04-4:08 i.e. towards end.
 

Dolphin

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Karen Lambert


Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Spring 2012 Meeting of CFSAC
My Testimony
June 14, 2012 @ 11:30am EST (via conference call)
Washington, DC

"I dedicate this to the doctor, who 9 years ago, told me that I had an irrational fear of diseases. He told me that my symptoms were a figment of my imagination, and that I should stop writing letters, and stop fighting all together….because the world does not care. This one is for him."
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I have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and NON-HIV AIDS, idiopathic CD lymphocytopenia. With these two diagnoses, I believe I am living proof that the AIDS-like CFIDS is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that NON-HIV AIDS and CFIDS are basically the same mysterious immune disorder.

Nine years ago, after a heterosexual sexual encounter, I became seriously ill with what looks like the natural disease progression of AIDS. After an "acute infection" and a "period of asymptomatic health," (albeit short) I have fallen extremely ill to an unrelenting, progressively-worsening AIDS-like demise. I can pinpoint exactly when I was infected with my "chronic viral syndrome of unknown etiology" and because the "acute infection" stage was so distinguishable, I can also pinpoint exactly when my undiagnosed pathogen left my body and infected yet another host. I am a link in a chain of sick people.

Whatever I am currently dealing with, it strongly resembles classic textbook AIDS. But, to add to my inquiry, I also clinically satisfy the CDC's criteria for the diagnosis of “Chronic Fatigue Syndrome.”

Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFIDS, ME, and AIDS. Most people with CFIDS and ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious CFS than to be told that they have AIDS.

I have a Master's degree. I was a director at my firm. I used to be a triathlete. I have never used IV drugs. I had never traveled abroad. I can count my sexual partners on two hands. I fit into no risk groups. Statistically speaking, I know that my undiagnosed infectious and communicable disease is not rare...so, you tell me, if they are not in the miscellaneous CFIDS category, where are all these other immunosuppressed people?

Anyone with CFS, who does not consider the possibility that CFIDS or ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness.

Why aren't CFIDS and ME reportable illnesses overseen by our public health department? Why are ME and CFS (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn't anyone else but me, very clearly see, the catastrophic cover-up going on here?

Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of CFIDS) on the front pages of every newspaper in the world? And if CFIDS and ME are Non-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 - 28,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS pandemic ---> TENFOLD.

Regardless of how politics may try to dissuade or delude you, all you need to know is that my idiopathic immune dysfunction is infectious! It is contagious! And it is spreading!

I am not afraid to say that I have AIDS without HIV. I am equally as unafraid of saying the most obvious thing about CFIDS: IT SURE DOES LOOK LIKE AIDS TO ME.

If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak (of bravery) from coast-to-coast, and across-the-pond.
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If people believe HIV causes AIDS, and that CFIDS could be caused by a retrovirus, why couldn't CFIDS be caused by an undiagnosed strain of HIV? I would like to suggest that CFIDS/AIDS be researched together as one illness."
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Over the past 9 years, after opening my private foundation, I got the White House to open an investigation, Senator John Kerry to forward my case to the head of the CDC, and the U.S. Global AIDS Coordinator to forward my case to the NIH/NIAID.

Amongst other things, my blood has been to the CDC-Atlanta (twice) and to the Washington-DC pathology labs. I have sat on conference call with the American Red Cross. Facilitated by the United Nations, I have been out of the USA (twice now) to meet with a Nobelist and his colleagues to provide blood samples.
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I have come to appreciate that what that doctor told me 9 years ago (i.e., "nobody cares") is probably true, but my response to him is this:

"Just because the world may not care about me, does not mean that I do not care about them. I no longer fight for me; I fight for you. I will keep writing letters because I fight for humanity.

Thank you."

www.cfsstraighttalk.blogspot.com