by Helen Donovan
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.
By that time he was already bedridden but able to send emails and nothing else. In early 2017 I had to insist that he come home so I could look after him. His health was becoming worse and he gave me access to his emails and any personal correspondence he received. It was around that time that I realised
the real importance of his FOI and the work that others from around the world were doing. I started contacting people who were sending Alem emails and told them how ill he had become.
Going back in time and thinking about how Alem was still working when he
was in bed I can’t help but think that the PACE Trial submission was a major reason why he “crashed”. He maintains it was a number of things like lack of
being able to sleep properly and the many problems associated with ME. I have nothing but praise for the ME community both in Australia and worldwide with the well wishes people have sent Alem over the last few years.
He received a visit from David Tuller when he came to Australia in April 2018 and saw Alem a couple of times. I know that gave Alem a huge boost and David wrote a lovely piece about his visit to Alem.
Alem’s life now consists of lying in bed 24 hours a day. He cannot leave the room. He wears an eye pad as he is sensitive to light. He has ear plugs as he is
sensitive to sound. The room is darkened and he does not talk.
I have taken it upon myself to make Alem’s name known and what he and others have done to expose the PACE Trial. I know it was a team effort to win
the case at the Tribunal and Alem would be the first to agree but I still feel he truly deserves the thanks he receives from the ME community.
Yes, I am so proud of my dear son but I cannot even give him a hug as he is too sensitive to be touched!!
May the 12th is ME Awareness Day , it is also Alem’s birthday!!
Happy Birthday my darling son.
My heart bleeds for him.
Helen Donovan (Alem’s loving mum)