Archive for Advocacy – Page 3

The Definition ‘Coup’ – the FEDS Trample CFSAC – Farm Out A Consensus Chronic Fatigue Syndrome Definition To Outside Group: Action Needed

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 [...]

ME/CFS Patients Call To Action: Advocates Call for FDA to Hold ‘Real’ FDA Stakeholder’s Meeting

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 Skydiving for ME/CFS Research on May 12th, International ME/CFS Day

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 [...]

FDA Stakeholders Meeting For Chronic Fatigue Syndrome II: Barriers, Breakthroughs and Possibilities For Drug Development

"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 [...]

Patients Give FDA the Scoop on ME/CFS in First Day of FDA Stakeholder Meeting

"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 [...]

Last Chance To Register or Comment Plus Surveys and Webinars Galore for Chronic Fatigue Syndrome FDA Stakeholders Meeting

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 [...]

Oh No! ME/CFS Community MIA Thus Far on Historic Opportunity: FDA Drug Development Workshop Needs Your Comments!

(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 [...]

Redefining ME/CFS the Easy Way: Crowdsourcing Effort to Fund Norwegian Rituximab Trial Begins

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 [...]