A Mother’s Story: Alem Matthees

Me Australia


by Helen Donovan in ME Australia.


May 12 is Alem Matthee’s birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem’s work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study’s authors claimed. In 2014 Alem filed a Freedom of Information (FOI) request and followed up for several years, resulting in release the anonymised data of the PACE trial. His work busted open a UK science scandal.

My name is Helen Donovan and I am the mother of Alem Matthees. As most
mothers would be proud of their children, I am for one, extremely proud of Alem.

Alem has severe ME. He has had the disease for about 20 years but has been bedridden for over three and a half years. In most of that time before he was bedridden, he spent living independently with help from myself and the family. He has always been a private person never asking for anything and has a very gentle disposition.

For years he use to talk about the PACE Trial and how he and many others were working towards having the true findings made public by the authors. He told me this was all taking place in the UK and that would have been after 2011 when the so called PACE Trial was published. He started doing research, along with other colleagues around the world, into GET and CBT and the effect it would have on ME/CFS patients. I know he worked very hard to put the case together to submit a FOI, (to have the trial results made public) but I had no idea how involved and important this was till finally in late 2016 he told me that his FOI was successful.


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