This is wrong on so many levels - Mary Dimmock, advocate and mother of a severely ill son with ME/CFS
Thanks to advocates Jennie Spotila, Mary Dimmock and others for jumping on this quickly.
The Department of Health and Human Services is all of a sudden in the definition game. The cynical viewpoint Read more [...]
ATTENTION ME/CFS COMMUNITY
We the "FDA Team" are asking you to send the message below to the FDA and to listed members of Congress.
The recent patient-focused drug development meeting held by the FDA was a start - but only a start. The FDA stated that their goal was to support treatments Read more [...]
Bob Miller can't dance...he can't run...he can't even play baseball for ME/CFS - he's not strong enough for that but he can fall, and May 12th, ME/CFS International Day, he's going to fall a long way, very quickly, to raise money for ME/CFS research.
It's been a busy couple of months for Bob. Read more [...]
"What we need in CFS is what I call the development of an innovation supply chain."
Bernard Munos started off Day II of the FDA Stakeholders Meeting on Chronic fatigue syndrome (ME/CFS). Bernard Munos is not an FDA guy - he's an independent analyst - really a gadfly of sorts - with a long Read more [...]
"There's an unmet medical need right here and there has been for a long time" Bob Miller
The first day of the FDA Stakeholders Meeting was like an patient/FDA roundtable session focusing on what symptoms are worst and what treatments worked best. It's not clear how much 'actionable' information Read more [...]
Today is the last day for patients to register or provide comments to the FDA Stakeholder Meeting on April 25th/26. This meeting is turning out to be a bigger deal than we knew. Not only will it light a fire under the FDA to get moving on chronic fatigue syndrome but it's also the first of 20 Read more [...]
(This is unusual...the ME/CFS community has been so good at supporting advocacy efforts that it's shocking when it doesn't happen. Last December, for instance, the ME/CFS Community so swamped the FDA during the Ampligen Advisory hearing that they broke the FDA's servers. Now, the patient input Read more [...]
A Little Background
The Norway Rituximab story is an incredible one. Olav and Mella, two Norwegian oncologists find that several Chronic Fatigue Syndrome (ME/CFS) patients unexpectedly improve dramatically after giving them Rituximab for cancer. Amazed at the effects of this two-disease-for-one package, Read more [...]