We mark this date remembering those who have advocated for myalgic encephalomyelitis and other marginalized diseases. 

For background on May 12 as Complex Immunological & Neurological Diseases (CIND) day and Thomas Hennessy, Jr’s legacy, see our previous guest blog from May12.org here: https://www.meadvocacy.org/may_12_international_awareness_day_guest_blog_of_may12_org

While MEadvocacy is mostly in a holding pattern, we still follow what is happening in the US and wanted to share how the work of the MEadvocacy volunteers continues to be useful.

On Feb 21, the NIH finally published a paper about the findings from the intramural study.  Sadly, predictions about the flaws in the study we wrote about in several articles, proved to be accurate.  

May12.org Founder and Executive Director, Joni (Comstock) Elliott, (who is also an MEadvocacy co-founder, advisory committee member and volunteer) called in to the March 8, 2016 teleconference representing MEadvocacy.  See the responses from Dr. Koroshetz and Dr. Walitt in the article:
NIH OBLIQUELY DISMISSED 725 VOICES WHILE STATING THAT PATIENTS' INPUT MATTERS.

The following articles voiced more of our concerns:

• NIH TELEBRIEFING PRESENTATIONS AND PROTOCOL IN A NUTSHELL
• NIH SIDESTEPS CRITICAL PROBLEMS WITH THE ME/CFS STUDY

Following the publication of the paper many advocates spoke up about the flaws and harmful unfounded conclusions in the publication.  

Colleen Steckel (an MEadvocacy advisory committee member) wrote about it HERE.  Her article includes links to many other articles including ones by Jeannette Burmeister and Hillary Johnson. 

MEadvocacy was referenced in the article, Errors, omissions, potential bias: Why some ME experts are calling for a retraction of the NIH intramural study,  by The Sick Times stating:

“The group MEadvocacy compiled a petition letter with over 700 signatures in February 2016, demanding that then-NIH director Francis Collins “immediately cancel” the intramural study. They wrote: “If NIH follows through with this study as is it will propagate, aggravate, and add immeasurable harm to… ME patients.” The group also sent a follow-up letter, writing, “The choice of Dr. Brian Walitt as lead clinical investigator is an outrage… certainly the NIH had knowledge of Dr. Walitt’s beliefs yet, chose to put him in charge.”

In other news, ME-ICC coalition of advocates raised concerns about a proposed US ICD symptom code for post-exertional malaise.  We were glad to see this proposal has been tabled. To understand concerns about this proposal see HERE. 

For ongoing news about what is happening in the ME community we recommend following:

• View from the Trenches of Myalgic Encehalomyelitis (Colleen Steckel)
• The World of Osler’s Web (Hillary Johnson)
• Thoughts about M.E. (Jeannette Burmeister)

We continue to recommend signing the #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC petition.  

We are wishing all people with ME a year of better health, proper recognition of the disease and most importantly good research that will lead to effective treatments.