Andrew
Senior Member
- Messages
- 2,504
- Location
- Los Angeles, USA
Below is my emai:
Hello,
As a member of IACFSME and a patient with CFS/ME, I was pleased to read that Hemispherx Biopharma, Inc is providing support for an upcoming workshop to develop clinical guidelines for chronic fatigue syndrome. Because oversights in so many well-meaning guidelines in the past resulted in disappointment (and even anger) from people who suffer from Chronic Fatigue Syndrome, I urge you to post a draft of the guidelines for patient review and feedback before it is finalized. I will also try to follow up this email with some notes about problems I have seen in the past, along with possible solutions.
Sincerely,
Hello,
As a member of IACFSME and a patient with CFS/ME, I was pleased to read that Hemispherx Biopharma, Inc is providing support for an upcoming workshop to develop clinical guidelines for chronic fatigue syndrome. Because oversights in so many well-meaning guidelines in the past resulted in disappointment (and even anger) from people who suffer from Chronic Fatigue Syndrome, I urge you to post a draft of the guidelines for patient review and feedback before it is finalized. I will also try to follow up this email with some notes about problems I have seen in the past, along with possible solutions.
Sincerely,