- Chronic Fatigue Syndrome / M.E.
- Stories
19 year old Straight A Stanford Comp Sci student, well Jan 2014, then contracted M.E.=Myalgic Encephalomylitis, now bedridden
Need R&D funding for a cure. Famciclovir did not seem to help & Valcyte seemed to cause major crash, so avoiding meds, need R&D. Tom is now bedridden, cannot talk, chew, listen to sound, tolerate light. His very promising life is on hold & passing by. Please donate to fund top R&D on Biomarkers for Severe M.E. directed by Stanford Genetics Professor Ron Davis, & others at OMF, www.openmedicinefoundation.org. We need $250M per year funding from US NIH to make progress on this disease. US HHS, FDA, CDC, NIH need to stop their gross discrimination against M.E., that has been funded approx $6M per year, vs $3B per year for HIV/AIDS, that is a rarer and more livable disease. THAT is GROSS DISCRIMINATION by the US Federal Government and must change NOW! Please join MEACTION.net for protests in key cities. (mjc on behalf of TomC). Please ask every ME/CFS patient to add themselves to Diseasemaps.org so the millions missing become visible. Everyone associates pink with breast cancer, so let us make blue lights at night and blue ribbons or bracelets by day symbolize M.E. I wear blue bracelet daily, have blue porch light and sign "Blue until R&D Cures M.E." Ask everyone to purchase not from Amazon.com, but Smile.amazon.com, same site and prices, but 0.5% can go to favorite charity and recommend Open Medicine Foundation.org since they are funding top Biomarker study, ahead of sluggish NIH. Write every congressional rep, senator, mayor, governor to raise awareness about M.E. and educate every doctor, nurse you meet and neighbors, relatives, public. Please attend Sept 27th 2016 MEAction.net events in 20 cities. Excellent metabolomics paper, see: http://www.pnas.org/content/early/2016/08/24/1607571113.full Donate to www.End-MECFS.org, SolveCFS.org and similar superb 501(c)3 charities that are tax deductible (USA)
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My wife has had ME for 16 years, but very severe ME for last 6 years. We live in Mississippi where there are few M.D.s and almost no specialist. Due to the year round high humidity and heat, open windows are out of the question.(she also suffers from continual sweat outbreaks where she says she is so hot she begs for me to stuff ice bags around her-yet her hands are so cold it's scary ). Not menopause as she had full hysterectomy when she was 31. I have been reading about a new drug called Ampligen. The little I have read seems to show it has been very helpful to those with severe ME.
I manage my wife's social media accounts as she is sometimes able to scroll thru IG, etc. Our ME email acct is [email protected]. Since we are so medically isolated, please let me know what you have heard about this drug and if it is available . Thanks, Leighton Spann
