We have some quick updates on the planned NIH talk by Dr. Edward Shorter, a well-known ME denier and history professor.
–NIH has refused to budge despite the near-universal community outcry, numerous letters to both NIH and congressional leaders, and Dr. Davis telling NIH he will demand a Congressional investigation if this goes forward.
— Dr. Shorter will be speaking in the intramural center at 10 am EST on Wednesday, November 9. According to Solve ME/CFS Initiative (SMCI), NIH stated that the presentation is optional but open for NIH staff. NIH also confirmed that the meeting is not open to the public.
— NIH staff also told SMCI that Dr. Shorter was invited by the National Institute of Nursing Research (NINR). We know that two members of the NIH Intramural team (Drs. Walitt and Saligan) are from NINR but we do not know who arranged Shorter’s talk. We believe that Dr. Nath initially brought up the idea of there being a talk on the “history of ME/CFS”, but was not involved in its planning.
— The Solve ME/CFS Initiative has written a letter to the NIH to ask them to provide scientifically grounded balance to Dr. Shorter’s presentation. They have also put out an urgent action alert for people to contact their representatives in the House and ask them to contact NIH to denounce Dr Shorter’s invitation and call for balance. Please contact your congressman or congresswoman to voice your concerns.
Inviting an ME denialist to present on the history of a disease he does not believe in is bad enough. But the longer-term concern is that this is yet again another example of a serious misstep by NIH in its response to ME that could have been easily avoided with more meaningful engagement of the ME community.
NIH’s action also reflects a failure of the decisive leadership that NIH and HHS must exert to overcome the painful legacy of disbelief and stigma that have effectively buried this disease, stalled research, and harmed patients. Unfortunately, engaging Dr. Shorter moves us backwards and only serves to reinforce wrong-headed notions about this disease.
We must demand and expect NIH to address both of these issues if we are to effectively move forward.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the