CDC Website Pages on ME/CFS Now Mention Mold Connection and Chemical Sensitivities
Subsequent to a recent update, information provided about ME/CFS on the website of the Centers for Disease Control and Prevention (CDC) now includes a mention that…
Survey Results (Pt. 2): Moving Forward with Choosing the Right Name
By Lisa Petrison, Ph.D. Part 1 of this blog series provided some basic information on the findings of a recent community survey looking at opinions related…
Survey Results (Pt. 1): Evaluating a Proposed Name to Replace “ME/CFS”
By Lisa Petrison, Ph.D. A recent survey presented to the community by Paradigm Change and ME Advocacy asked a total of 1,147 people about their opinions…
Background on Names Recently Proposed to Replace “ME/CFS”
By Lisa Petrison Following is some background information about some of the names that recently have been proposed as possible replacements for the name ME/CFS (myalgic encephalomyelitis/chronic fatigue…
An Analysis of the IOM Committee’s Report on “ME/CFS”
By Lisa Petrison, Ph.D. The preliminary version of the IOM report focusing on the disease that the government is now calling “ME/CFS” was released yesterday (February…
Problems with the P2P Draft Report
By Lisa Petrison, Ph.D. Like many in the ME community, I continue to believe that the NIH P2P initiative is likely to result in an entirely…
The Problem with “ME/CFS”
By Lisa Petrison Following is a comment on the topic of the government’s new use of the term “ME/CFS,” which I delivered to the CFS Advisory Committee…
IOM Statement from Anne Keith
Here is the statement presented to the IOM committee on “ME/CFS” on January 27, 2014, by advocate Anne Keith. Many thanks to Anne for making the…
IOM Statement from Dr. Maryann Spurgin, Myalgic Encephalomyelitis Society of America
Following is the comment written by Dr. Maryann Spurgin of the Myalgic Encephalomyelitis Society of America for the Institute of Medicine meeting on January 27, 2014.…
IOM Statement from Charlotte von Salis, J.D.
Following is the comment written and presented by Charlotte von Salis, J.D., at the Institute of Medicine meeting on January 27, 2014. * Dear Panelists: You’ve…
Response from HHS: We’re Doing Everything Right, So You Have No Reason To Complain
By Lisa Petrison On December 14, 2013, I sent a letter to U.S. Health and Human Services Secretary Kathleen Sebelius, bringing to her attention problems associated…
New Letter Requesting Cancellation of HHS-IOM Contract and Signed by 197 Professionals and Advocates Sent to Secretary Sebelius
A new letter signed by 197 professionals and advocates working on behalf of individuals with Myalgic Encephalomyelitis (M.E.) has been sent to Secretary Kathleen Sebelius and…
Request to Secretary Sebelius: Please Replace Dr. Nancy Lee with a More Suitable CFSAC Designated Federal Officer
By Lisa Petrison Summary: This blog includes the text of a letter to HHS Secretary Kathleen Sebelius, asking that Dr. Nancy Lee be replaced with another…
Overwhelming, Growing Support of ME Experts by Advocates in Opposition to IOM Contract: Advocates’ Open Letter Re-Sent With Additional Signatures
As was the case with the experts’ open letter to Secretary Sebelius — first published on September 23, 2013, and then updated on October 25, 2013…
66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of Their Experts
Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the…
How Do You Win A Rigged Game?
By Erik Johnson and Lisa Petrison Starting in the fall of 1984, an epidemic of a very weird illness emerged in the Lake Tahoe area of…
An ME/CFS Petition Worth Signing
By Erik Johnson and Lisa Petrison About two weeks ago, 35 doctors and researchers specializing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) sent a letter to Kathleen…