- Messages
- 50
- Location
- Midwest USA
Are the SMCI/CAA really promoting their own viewpoint, but pretending that this viewpoint is that of ME/CFS patients? I have not followed their press and news releases, so I am not familiar with what they do or say. How do their news releases differ from say those of the UK's Invest in ME organization, which also recently expressed its opinion on the IOM report (and as far as I am aware, Invest in ME did not represent it's own opinions as being representative of the ME/CFS community in general)?
They have specifically stated they want to turn the report into action, which to me means implementation of the report. They also have brought in Morgan Fairchild who they are promoting as an activist and a patient and mentioned the meeting is for "our community", which gives the impression they are also advocating for patients.
Here is a quote from SMCI's webpage regarding next Wednesday's meeting. ( I have added emphasis)
"While the briefing is by invitation-only due to the limited capacity of the venue, we will webcast the event so that all in our community can participate."
http://solvecfs.org/morgan-fairchild-joins-smci-in-dc-for-iom-report-briefing/
Here is the exact quote from SMCI's fb post ( I have added emphasis):
"On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.
The briefing will feature three speakers:
- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO
You are invited to join us via webcast. Register for the briefing event here:
https://www.webcaster4.com/Webcast/Page/529/7674 "