In mid-February, the UK's Medical Research Council, with great fanfare, issued a press release announcing, “UK’s largest CFS/ME trial confirms safe and effective treatments for patients.” The two treatments they claimed were so effective are Cognitive Behavioral Therapy and Graded Exercise Therapy.
Most of the national media, which prides itself on researching its stories and digging below the surface, did what they do with most announcements of medical research results – they dutifully repeated the information in the press release. For the next couple of weeks, I saw dozens of headlines like these:
“Psychotherapy Eases Chronic Fatigue, Study Finds” – New York Times
“Study: 'Talking And Exercise Could Cure ME'” – Sky News
“Study Says 2 Therapies Help Fight Chronic Fatigue Syndrome” – Newsday
“Psychotherapy And Exercise Look Best To Treat Chronic Fatigue Syndrome” – NPR
“Pushing Limits Can Help Chronic Fatigue Patients” – Fox News
I will give some credit to the New York Times; they at least acknowledged that ME/CFS patient organizations and some researchers disagreed with the findings, although they didn't mention the significant flaws of the study.
On the other end of the spectrum was Sky News. They stated, “A landmark study has found that 60% of sufferers significantly improved if they were put on a tailored exercise programme or given talking therapy. Half of these patients reported a return to normal energy levels.” Neither statement was even close to the truth.
What concerns me about the media coverage is that rather than helping ME/CFS patients, one of these therapies – graded exercise therapy – could actually harm them. They could have done a great service for ME/CFS patients if they had just taken the time to really look at the study and point out even a few of its flaws.
Knowing what I know about ME/CFS and other research demonstrating the lack of effectiveness of the therapies in question, I found the news articles disturbing. As I began to take a closer look at the PACE trial itself and the people behind it, what I found was even more disturbing.
The History Behind the Study
The study was labeled the PACE trial. PACE is the acronym for “Pacing, Activity, and Cognitive behaviour therapy: a randomised Evaluation.” The stated purpose of the study was to assess the effectiveness and safety of four treatments:
- Adaptive pacing therapy (APT)
- Cognitive behaviour therapy (CBT)
- Graded exercise therapy (GET)
- Specialist medical care (SMC)
Problems with the PACE trial began long before the study was even conceived. The UK government has a long history of and, in fact, leads the world in its efforts to have ME/CFS (myalgic encephomyelitis or chronic fatigue syndrome) reclassified from a neurological disorder to a mental and behavioral disorder.
