In the most recent post in this series, I encouraged ME/CFS patients to contact UK charities and ask them to write open letters to Queen Mary University of London (QMUL) calling on them to release anonymized data from the PACE trial. Despite QMUL’s absurd stance on sharing data from the PACE trial, they had stated that they were seeking “patient advice” on the matter so I was sure they would welcome contact from charities that are in direct contact with patients. Perhaps as a result they will finally realise their stance is causing harm to science and distress to patients. They should drop their appeal of the Information Commissioner’s decision that the data must be released.
The response from readers was incredible with lots of patients joining the effort. Results have been dramatic!
- ME Association: has written to QMUL in support of the FOI request which the university are appealing. A copy of that letter can be viewed on their website.
- 25% ME Group: have written a letter (Word doc) to QMUL asking them to arrange release of the PACE trial data following the requests of patients and academics. They also raise concerns about harms experienced by their members from the PACE therapies.
- Action for ME: published a statement that they strongly support the release of anonymised data from the PACE trial and will be writing a letter to QMUL that they will make public. Additionally, all future research funded by AfME will obligate researchers to share anonymised raw data.
- Hope 4 ME & Fibro NI: has written to QMUL in support of the other requests for the anonymized PACE trial data to be released. A copy of their letter on their Facebook page.
- Invest in ME: has written to the both the medical research council and the Lancet demanding that the data be released. Their statement and letters can be read on their website.
- Tymes Trust: has written to QMUL asking them to reconsider their decision to fight the Information Commissioner’s decision that the data be released. Particularly in light of the risks to children being asked to take part in the PACE-for-children study (MAGENTA). Read a copy of the letter on their Facebook page.
- MERUK: Although yet to make an announcement, they have communicated that they are taking the issue very seriously and their committee will meet next week to discuss appropriate action.