Phoenix Rising Forums Accomplishments

[Cort]

This is a section to post accomplishments rising out of the Phoenix Rising Forums

Complete Transcriptions of

• Dr. Peterson's Talk at the CFSAC Meeting (Oct 28/29th '09)
• Dr. Coffin's Talk at the CFSAC Meeting (Oct 28/29th '09)
• XMRV Q&A Session at the CFSAC Meeting (Oct 28/29th '09)
• Dr. Klimas's 2 Hour XMRV Lecture (Oct '09)
• Dr. Bell's Tustin, Ca XMRV Lecture (Jan ''09)
• Dr. Mikovits Santa Barbara, Ca XMRV Lecture (Jan '09)
• The Dr. Raccaniello/Dr. Goff Talk on XMRV (April '10)

Activities

• New Day Treatment Review Group - for 4 months or so the New Day Group publicly followed 4 patients as they underwent treatment with the doctor that cured Mike Dessin. Negative activities on the Prohealth Message Boards and elsewhere resulted in the group being turned into a private group (August 2009).
• Phoenix Rising Action Group - Frank creates a mailing list that provides members of the Phoenix Rising Forums and ME/CFS patients quick access to actions that make a difference. (March 2010)
• "SockIt2ME/CFS" Public Art Activism 'socks' project (aka the AID's Quilt) and a website to house the project created by Creekfoot and her compatriots (April 2010)
• Comprehensive XMRV+ survey Over several months Kim, Advocate, Julius and other members of the Phoenix Rising Forums create an XMRV survey to characterize people who tested positive for XMRV (May 2010)

Fundraisers

• Provided over $3,000 in funds and goods to the research end of the Fatigue Consultation Clinic run by Dr. Lucinda Bateman. The Funds will go to build a new information instructure (new computers/software) to enhance her productivity in this area. CBS, a forum member, will develop the program and train FFC members how to use it. (April 2010)

Video's

• StarryEyes creates an incredibly moving Phoenix Rising Video (April 2010)

Stories

• ME/CFS Stories - as of Feb 2009 over 150 people have told their stories of their experiences with ME/CFS in the Introduce Yourself Forum on Phoenix Rising.

 

[Julia Rachel]

Amazing accomplishments!!!

 

[JillBohr]

This is the best site EVER! I remember several weeks ago (on a Thursday - my day off) and it was down for several hours. It was a very difficult time for me. This is the first place I go to when I have time to surf.

 

[Rick56]

hi

one thing about chronic fatigue you eventually feel better it took me about 4 years but it does happen.

 

[Min]

Well done Cort, that's brilliant!

one thing about chronic fatigue you eventually feel better it took me about 4 years but it does happen.

yes but chronic fatigue is a completely different illness to myalgic encephalomyelitis (I have had a severe form of it for the last 16 years with no remission ) - sometimes called by the ridiculous name of chronic fatigue syndrome:

WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E. ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder.

M.E. is now being linked to a gamma retrovirus - without medical intervention people with this retrovirus will never 'feel better'