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Wednesday, February 4, 2015 will be a day the close-knit Myalgic Encephalomyelitis community will long remember as being extraordinarily painful. Activist Vanessa Li succumbed to heart failure during the night. She was 34 and had fought M.E. for 15 years. A shockwave could be felt running through social media and M.E. forums as news of her death spread. In the M.E. patient’s’ world, where emotional stressors are paid for in physical pain, Vanessa’s death felt literally like a gut punch.

Vanessa was a superb activist and, although frequently bedbound, she worked tirelessly to advance the M.E. cause. She instigated the Microbe Discovery Project and raised almost a quarter of a million dollars for Dr. Ian Lipkin’s research. She knew the science behind this disease and shared that knowledge freely. Her opinion was valued and many considered her a treasured friend. Vanessa touched many and she is sorely missed.

A day after Vanessa’s death, grief is turning to a slow burn of anger. M.E. claimed Vanessa before she could see the results of her hard labor. She deserved that and more. Vanessa deserved to live her life with M.E. far better than she was allowed.

Vanessa deserved solid, tested M.E. treatments, established by well-funded research teams. She deserved her government to recognize the disease and not turn a blind eye to her suffering. She deserved medical professionals who had received training in M.E. in medical school. She deserved doctors who realize M.E. is not going to be cured by exercise and positive thinking and who worked for her instead of against. And, Vanessa deserved a public who knows about M.E. and who give the disease the same credibility and empathy as MS, Parkinson’s, Alzheimer’s, Polio and AIDS.

On February 10th, the Institute of Medicine Committee on Diagnostic Criteria for ME/CFS will spend an hour unveiling their long-anticipated report. The Pathways to Prevention (P2P) has issued their draft report, collected responses and the final report is due to be released soon. HHS has stalled the patient population for over eighteen months waiting for these reports; this on top of years without advancing a single step toward helping the M.E. community. Now, the reports are done and the waiting is over. It is the government’s time to act.

Congress must be made to hold HHS/NIH and CDC accountable for their neglect of M.E. patients and Congress must ensure that reasonable recommendations from CFSAC and M.E. experts are enacted. Every unreasonable recommendation made by the IOM and P2P must be loudly discredited by patients and the experts. Media needs to finally step up and do their part in educating the public and showing M.E. in an honest light. Benefactors need to recognize the tragedy of M.E. and start donating as they do other chronic diseases, including the establishment of a M.E. Society. The hard work is just beginning and every M.E. activist is needed to join the common cause.

Vanessa Li will be sorely missed as the M.E. patients take on this next fight to better their lives. It is tragic she did not live to see real change made in how the world treats M.E. patients. She deserved better. Everyone living with M.E. deserves better.

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Please join me in remembering Vanessa Li by donating in her memory: http://www.microbediscovery.org/  http://www.meadvocacy.org/