From a blog by The Self Taught Author.
On 1st February, I wrote to each of the ME/CFS charities in the UK asking them to back patients up in calling on Queen Mary University of London (QMUL) to release anonymized PACE trial data. Lots of other patients joined the effort and contacted the charities too and this was important as collectively we patients can be heard. Most of the charities responded quickly and made public statements that QMUL should release the data. But one of these charities not only did not take action but did not reply to me or other patients I have spoken with.
Despite my chasing them up, the Association of Young People with ME (AYME) ignored my message for over two weeks. I was about to publish this blog post when they finally acknowledged receipt of my message, but their reply failed to address my concerns. I have today sent them the letter that appears below. If you have yet to contact AYME on this issue, I encourage you to contact them to ensure your view is heard. The email address they have requested people contact them on is firstname.lastname@example.org .
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