PART 1: Instructions to Take Action
To All ME/CFS –S.E.I.D. Patients, Family and Friends,
As most patients know the IOM and NIH P2P have released some positive findings in our disease. While there Read more [...]
"I just try and not think about it, because it gets me furious" multiple sclerosis patient
The story sounds eerily similar. Citing questions regarding study quality and side effects, the FDA refuses to approve a drug for a condition for which few or no effective drugs exist. After hearing Read more [...]
“CFS and ME is a serious disease or set of diseases for which there are currently no FDA approved therapies” 'Voice of the Patient' Document
The FDA's Patient Focused Drug Development Initiative marks the first time the FDA is implicitly
including patients narratives and needs into their Read more [...]
The F.D.A. recommendation is likely to have a significant impact on the availability of the drugs. New York Times
Last week FDA's ruling reclassifying narcotic pain relievers such as Vicodin and Lortab which contain hydrocodone combined with acetaminophen as schedule II drugs will make them more difficult 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 [...]
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 [...]
Dear Patients, Patient’s Loved Ones and Friends,
Since I ended my hunger strike, I have learned that the FDA has sent invitations for the ME/CFS scientific stakeholder workshop scheduled for April 25-26th. The FDA hasn’t disclosed who it is inviting, and did not solicit input from patients. You, Read more [...]
We thank Senate Majority Leader Harry Reid for his longtime work and support for the ME/CFS community, and especially for his recent efforts with the Secretary of Health to stress the serious unmet need in the ME/CFS community and the drastic implications of the FDA's denial of the only medicine in Read more [...]
The information found on Health Rising is mostly put together by people with ME/CFS and/or FM.
It is not intended as medical advice and should be used for informational purposes only.