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.
For over 30 years, HHS has used these silencing tactics on ME advocates and now our own “community platform” (MEAction) is using the same tactics against MEadvocacy and independent advocates to silence our voices.
I left a comment on their website Friday afternoon, but unfortunately, it has not come out of moderation yet. *edit – my comment was just posted 11:24pm along with a reply from MEAction (although the timestamp for my comment shows 9/23/2016 at 4:12pm – which is the time that I posted my comment to their website)
You can read my comment below:
On August 12th, 2016, I sent the following letter to MEAction regarding their MillionsMissing demands:
MEadvocacy sent you a letter before the May 25 protest letting you know that they and their supporters would not endorse demands from the ME community that do not include as a priority the name myalgic encephalomyelitis in conjunction with the ME criteria (CCC and or ICC) – not the CDC or IOM criteria.
Even though I am an independent advocate now, I advocate for the same demands as MEadvocacy.org and their supporters.
I do not support demands to HHS that do not start off with demanding recognition of the real neuroimmune disease ME. Without this recognition, we are causing harm to the ME patient community.
In addition, to use the name ME without advocating for criteria created by our ME experts is deceitful. The IOM panel themselves distinguished IOM/SEID from ME and recommended separate coding.
ME advocate – relatingtome.net.
MEAction did not address MEadvocacy’s concerns about the demands in May, nor have they addressed my concerns in my letter to them dated August 12th, 2016.
Their current demands have not changed the wording in section #3 about Education. They still demand the CDC amend their website and educational information to comply with 2014 IACFSME Primer and with the IOM report supplemented by CFSAC recommendations.
MEadvocacy has shown in their blog – Analysis of CFSAC August 2015 Recommendations for the IOM Criteria that the IOM criteria – even if the CFSAC recommendations are incorporated will result in inferior criteria to the CCC and the ICC.
The majority of ME patients prefer the CCC and ICC criteria over the IOM as outlined by Dr. Leonard Jason’s recently published paper: Patient Perceptions Regarding Possible Changes to the Name and Criteria for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Over a thousand global patients filled out questionnaires about the name and criteria for the disease. The results revealed that 32-35% of respondents approved of the IOM criteria, compared to 58-64% approval of the CCC, and 55 to 58% approval of the ICC.
In addition, myalgic encephalomyelitis was the preferred name chosen by a majority of patients 65-68%. This demand is not even mentioned in MEAction’s demands to HHS!
I therefore, cannot endorse MEAction’s demands and would ask MEAction to make it publicly very clear that these demands do not reflect the demands of the majority of ME patients.