A letter jointly signed by the Solve ME/CFS Initiative (SMCI) and over 50 other ME/CFS organizations and advocates was sent to the Centers for Disease Control and Prevention (CDC) this week. The letter, authored by leading advocate and SMCI board member Mary Dimmock, calls for action on the cognitive behavioral therapy (CBT) and graded exercise therapy (GET) recommendations that continue to reside on the CDC’s website despite years of community protests. The letter eloquently summarizes the numerous updates in the field, including the recently published Agency for Healthcare Research and Quality (AHRQ) addendum regarding the PACE trial, and again calls upon the CDC to act.
The letter highlights the damage CBT and GET can cause through the story of Nita Thatcher, an ME/CFS patient featured in David Tuller’s most recent report, “Worse Than the Disease,” and cites four key issues with the PACE trial, which purported to find benefit to patients from CBT and GET: 1) Poor conduct, 2) the inaccurate disease definition utilized, 3) the scientifically invalid disease theory, and 4) the harm done to patients by CBT and GET.
The CDC’s website is considered the definitive source for medical information for many, including both doctors and patients. The ME/CFS community, including our organization, has long called upon the CDC to remove incorrect information. Time will tell if, with this compelling letter, at long last the CDC will act.