Kim McCleary, President of The CFIDS Association, has published her report from the April 27th meeting with the CDC on the ME/CFS 5-year research plan. From what I gathered after reading the report, the CDC is still less than enthusiastic and underwhelmed by ME/CFS and it just seems to me that they still don’t take the illness as seriously as they should. In Kim’s report, there is a lot of detailed information on this meeting and also on the events that have led up to this point. The CFIDS Association has been fighitng hard for us and this letter from her specifically details the efforts over the past 2 years.
Here’s some of what Kim had to say in her report:
The lack of detail about CDC’s research plan before the April 27 session left many to use their time to plead broadly for help with better diagnostics and treatment, or access to physicians who would recognize the severity of their symptoms and offer some relief. Others expressed strong emotions about the lack of progress over 25 years and deep concern about CDC’s propagation of a broader “empiric” classification method for identifying CFS patients enrolled in its studies. Tempers often flared about the lack of respect shown by Dr. Reeves and others for patients’ concerns and the lack of productivity and direction that defined CDC’s CFS research in recent years. Several people demanded new program leadership and others stated outright that Reeves should be replaced.
To read all of Kim’s report, click the link below.
From the Desk of Kim McCleary: CDC Solicits Input & Gets Plenty
I have recently been suffering from severe tiredness. I was thinking I could have CF, I did a lot of reading on the web and was sure that was what I had. I went to the doctor and discovered, after a few tests, urine and blood, that I am diabetic. That explains the tiredness. I am not sure how I feel about all this. Apart from the tiredness, I always felt I was a healthy person. No other person in our family has Diabetes and I am only 40.
Jo.