Patients with ME await with much impatience for Thursday and Friday April 7th and 8th 2011. There will be a very important conference at the NIH (National Institute of Health) called "The state of the Knowledge". You can view the agenda here. Interestingly, the conference is overbooked and some will have to watch it from a TV in an adjacent room- I feel really sorry for those who booked a flight and won't even have a chance to applaud Dr Mikovits in person. 2 of our long time advocates and also patients, Pat Fero and Mary Schweitzer have even been allocated 10 minutes each to speak. They have been part of the organization committee, which provides a certain satisfaction that patients have been consulted for this. I personally am very thankful for Dr Mangan at the NIH for coordinating this conference and dealing with the glitches all along.
It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.
Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.
This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.
My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.
The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.
So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.
The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.