The PACE trial - Part 3: Criteria

There are several diagnostic criteria for ME which complicates research and hinders the development of safe and effective treatments. Broad criteria for ME results in misdiagnosis and incorrect treatment. Researchers need stricter criteria [1]. Misdiagnosis is common, 40% of patients diagnosed by GPs are found to have other fatigue-related conditions [2].

The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days/weeks/months. The Oxford criteria used in the PACE trial did not require Post Exertional Malaise [3]. Some participants may have had other fatigue-related conditions [4].

When studies using the PACE criteria were excluded from a US health agency review the
positive effects of behavioural treatments virtually disappeared [5]. The results of the PACE trial cannot be applied to the ME patient population because the diagnostic criteria are not representative. Patient survey evidence directly contradicts the results of the PACE trial [6]. Multiple surveys have consistently shown that Graded Exercise makes over 50% of patients worse [7].

The Agency for Healthcare Research and Quality (AHRQ) and The National Institute of Health (NIH) recommend the criteria used in the PACE trial should be retired [5,8]. The NIH stated that the criteria could "impair progress" and "cause harm" [8].

GET INVOLVED:
ME Association (UK Support and Research Charity)
Solve CFS (USA Research and Support Charity)
Open Medicine Foundation (USA Research Charity)

CREDITS:
Professor Julia Newton
Dr Charles Shepherd - You and Yours - BBC Radio 4
Dr Anthony Komaroff MD
Professor Dane Cook speaking at Solve CFS
Ron Davis - Emerge Australia Symposium
David Tuller DrPh
Dr Charles Shepherd - BBC Newsbeat ME and me
Hannah Radenkova - ME patient describing an energy crash

Patient blogs
Hannah Radenkova footage used to describe an energy crash

REFERENCES:

[susanhall]

Thank you for producing these videos. I have been following the PACE trial for a while now as I have been diagnosed with Chronic Fatigue Syndrome which I have had since 1981. These videos have pulled together a lot of the concerns about the PACE trial. I hope many people will watch them and understand better the difficulties patients have been having.