The name of Australian patient Alem Matthees has become familiar in the last few days since a tribunal ruled that Queen Mary University of London (QMUL) must release to him the anonymised raw data from the PACE trial. Matthees requested in March 2014 under the Freedom of Information Act.
The decision is widely regarded as a landmark victory for patients in their efforts to get acknowledgement of serious problems with the analyses used in the trial.
Now the ME/CFS Society of WA has started an e-card to thank Matthees, and we encourage you to sign, to help show our community’s appreciation to him. No registration is necessary.
PACE’s results are influential in the UK and elsewhere in supporting the use of graded exercise therapy and a special form of activity-encouraging cognitive behavioural therapy for ME/CFS, widely seen as inappropriate by patients.
Matthees requested data from the study in order to perform the main outcome and recovery analyses that were specified in the study protocol but abandoned once the trial was underway. The new analyses included a threshold for recovery in which patients would be considered successfully treated even if their disability score worsened during the trial to almost the level of the average patient with Class II congestive heart failure.
So far, The Lancet, who published the study’s main outcomes, has ignored calls for reanalysis of the data from a group of over 40 scientists, and the study authors and QMUL have ignored a petition signed by over 12,000 patients with a similar request.
An appeal by QMUL against the tribunal decision remains a possibility, but would only be allowed on a point of law rather than on the basis of new facts or arguments. Meanwhile, journalist and public health expert Dr. David Tuller of the University of California, Berkeley, who has written extensively on PACE, described the tribunal outcome as the result of “amazing work” by Matthees.
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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