MEadvocacy sent a petition to NIH to cancel and restart the NIH Intramural Study on ME/CFS because of the many significant problems with the study’s design and protocol and lack of myalgic encephalomyelitis (ME) stakeholders’ input.
Since then, NIH has used various and confusing ways to communicate new and changing information about the study. As further information became available, we voiced our deep concerns about many of the significant issues with the study: multiple and ever-changing criteria, some of which are deeply flawed; biased and/or inexperienced investigators and advisors; additional problems with the study’s design; mistrust of the government health agencies and the problems with the way NIH is communicating.
This is a unique opportunity to design a robust study using the comprehensive resources of the NIH Clinical Center. It is crucial that this study be done with ME experts' and stakeholders' input from start to finish. This will ensure meaningful results and scientific advancement for patients who suffer from this serious, disabling disease.
Read more hereDr. Elizabeth Unger, CDC virologist, focused many of her studies and presentations on fatigue and the mind/body theory as she explained in this CFSAC video clip (posted by advocate Khaly Castle).As co-author of the Reeves' criteria, Dr. Unger explained in this video how her agency applies the criteria when asked by Eileen Holderman, former CFSAC Member, how CDC plans to reconcile the case definition issue. In the NIH study, Dr. Unger has been assigned to the executive committee and charged with reviewing diagnostic validity of the patient cohort. At the February 16th CDC Grand Rounds, Unger promoted graded exercise therapy (GET) and cognitive behavioral therapy (CBT), which is also promoted by the PACE Trial, for which ME experts have warned against as causing harm to patients.