FOR IMMEDIATE RELEASE: Wednesday, November 2, 2016
CONTACT: L.A. Cooper |[email protected] and [email protected]
#MEAction Denounces Use of CBT in Treatment for Chronic Fatigue Syndrome
Patients with ME/CFS Urge NHS to Adopt Scientifically-Sound Approaches to Treatment
Study Finds No Difference in Treatment for ME/CFS Patients At Long-Term Follow-Up
According to reports in The Guardian and BBC yesterday, hundreds of young patients in the UK suffering from myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are set to receive online psychological therapy. FITNET will cost £1million, to be funded by British taxpayers — yet the Dutch study on which the trial is based found no difference in patients at long-term follow-up.
#MEAction, an international network of ME patients, along with other patient groups and scientists from around the world, condemn the waste of resources on such inherently flawed studies. Arguing that an intervention that consistently shows null results at long-term follow-up is not worth pursuing further.
The proposed study – known as ‘FITNET’ – shares many flaws with the debunked PACE trial, which was described as “the height of clinical trial amateurism” by Dr. Bruce Levin of Columbia University. It was subsequently discovered that scientists misrepresented the efficacy of cognitive behaviour therapy and graded exercise therapy in ME patients — but only after a protracted battle to obtain the open-sourced data.
It’s “more meaningless research based on flawed assumptions and bad studies,” said David Tuller, of University of California, Berkeley. “What a huge waste of time and money! When will these people let go of their dysfunctional and delusional belief that CBT is the pathway to ‘recovery’ from this disease? It’s complete nonsense.”
“Time and again, research has shown that graded exercise and cognitive behavioral therapy are not effective treatments for those suffering from ME,” said L.A. Cooper of #MEAction Network UK. “To state that it is curative would be misleading, and ultimately very damaging.”
Meanwhile, researchers worldwide continue to forge ahead with groundbreaking discoveries in ME/CFS: Fluge and Mella of Haukeland University have shown that an anti-cancer drug causes remission in a significant percentage of patients; Ian Lipkin and Mady Hornig of Columbia University have shown disturbed cytokine production patterns that differ early versus late in the illness; and numerous researchers in the US and UK have identified metabolic abnormalities in patients that differ vastly from controls, including Naviaux, who memorably stated that patients’ cells appear to be in a form of metabolic hibernation. Last year’s US Institute of Medicine Report unequivocally stated that ME/CFS is not a psychological illness after critically reviewing over 9000 pieces of scientific literature. The US Agency for Healthcare Research and Quality downgraded its recommendations for CBT and GET, stating that there was not enough evidence to label them effective treatments for ME/CFS.
“We can’t continue to feign ignorance and pretend other countries aren’t speeding ahead. The concept that ME can be improved with solely behavioural techniques is decades old, and frankly, an embarrassment to the nation’s scientific and patient community,” added Cooper.
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