AndyPR
Senior Member
- Messages
- 2,516
Blog post by Gabby Klein. Posting this on the basis of free speech. Personally I think this misses the wood for looking at just one tree but a number of people seem to feel the same way as the blog post, so I'm posting for that reason.
https://relatingtome.net/2016/09/25/my-comment-to-meactions-millionsmissing-protest-demands/
The organization, MEadvocacy , their supporters and independent advocates who advocate for the disease Myalgic Encephalomyelitis (ME) and for the criteria CCC and ICC represent a significant percentage of the ME community. According to Jason’s latest study (as shown below), the majority of the community prefers the name Myalgic Encephalomyelitis (ME) over CFS, ME/CFS or SEID and selects the CCC and ICC criteria over the IOM criteria.
Therefore, MEadvocacy and independent advocates such as myself, have repeatedly communicated the name and criteria preferences to MEAction to include them in the protest demands but have been cut out of the process time and time again. Additionally, MEadvocacy and their supporters were excluded when MEAction met with high-level staffers at HHS recently – again shutting out a significant voice in the ME community.
https://relatingtome.net/2016/09/25/my-comment-to-meactions-millionsmissing-protest-demands/