Nielk
Senior Member
- Messages
- 6,970
Many patients and advocates have been sending e-mails to the IOM expressing their concern regarding the selection of non-experts to the panel. Here is IOM's response to one of those e-mails:
This letter speaks for itself. This is the mindset of the organization who will re-define ME/CFS.
“I have been receiving lots of emails from the patient and advocate communities, so I certainly recognize and understand the shared perspective you offered.
The IOM staff are working to convene a committee that includes ME/CFS experts, as well as those who are less familiar with the disease, but capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community.
Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important.
Best,
Kate Meck”
This letter speaks for itself. This is the mindset of the organization who will re-define ME/CFS.