A Mother’s Story: Alem Matthees

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)

13 thoughts on “A Mother’s Story: Alem Matthees

  1. Thank you Helen, as a Mum of another beautiful young man with ME, I wish you all the best for Mother’s Day. Sending love to you and Alem. Penny.

  2. Helen, so heart wrenching, I wish you Happy Mothers Day, and I wish Alem some inner peace, somewhere, somehow.
    I am a mother and grandmother with ME/CFS for 21 years, and I couldn’t bear to go through my child having this illness, at whatever degree. Yes, Alem probably put so much effort into the research abut the PACE trials, he “crashed”. I guess
    you know about wi-fi modems and how debilitating they are, but there is protection. I want to offer you and Alem Hope,
    and I send Love and more Love, Billie

  3. Thank you Helen for sharing this, and thank you Alem, for everything you have done, though it has cost you dearly. My teenage daughter also has ME, and because of you, there is hope for appropriate treatments to come.

    Bless you, Happy Birthday. Love, Alison.

  4. Thank you so much for sharing your and your son’s story!!!! He is truly a HERO in our community!!!!!! May God bless us all with new findings, treatments, and cures for ME and it’s symptoms in the near future!!

  5. Many thank for writing this Helen, as the mother of a young adult with ME I fully understand what you are experiencing. Your son is a hero for my daughter. Sending much love to the family.

  6. Thank you Helen for writing this very moving piece. Alem’s work on having PACE data released is well acknowledged within ME circles, as is the cost to his health. What he achieved has been pivotal in the move for scientific transparency in ME research.

    As a mother, I cannot imagine the pain of being unable to give your son a hug, and his pain at being unable to receive one. I hope, that situation at least, changes soon. Sending you both gentle imaginary hugs through the ether, and many good wishes. Xx

  7. Dear Helen,
    Thank you so much for sharing your sons achievements!
    I am so very sorry it came at such a cost to him, but as a severe ME sufferer myself I am truly grateful for all the work he put into getting the PACE trial data released to the public. I know the fight still continues of which David Tuller and Dr MyHill in particular are at the cornerstone of ensuring that this trial is completely dismissed and it’s suggestions for treatment of ME/CFS be eradicated from all health policies across the globe.
    It was your sons work that has enabled this fight to continue and for these suggested treatments to be questioned by professionals world wide.
    On behalf of the ME community we are truly extremely grateful for Alem’s perseverance and determination in acquiring this vital information.
    He will be in the history books of our community! Without him and ‘his team’, the treatment plan for ME patients would have remained one of a psychiatric nature.
    This has obviously come at a great cost to Alems health of which we all regret, but he is a super hero in our eyes and we not only thank him, but we thank you for ‘picking up the pieces’ and caring for your son. Both of you have shown immense courage and strength. God bless you both.
    Much love,
    Fiona. xxxx

  8. My daughter has m.e for 17 years she is now 34 after doing the pace trial she is in bed 24 hours in day she also cannot stand noise en brightness As a mother i hope someday there will be a medicine that her le we be better Much strenght for al mothers who take care of there children

  9. Thank you for sharing this story. I understand a little of the pain you feel. My heart breaks for my daughter entering the 7th year of her illness. Alem is a true hero.

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