David Tuller Trial By Error: My Visits with Alem Matthees

Cheshire

Cheshire

Senior Member (Voting Rights)
During my week in Perth, I visited Alem Matthees twice. Alem is the patient who successfully fought Queen Mary University of London for access to raw PACE trial data; reanalyses of these data have exposed how the extensive outcome-switching led to the improved results reported by the investigators.

Alem’s health has declined dramatically since that 2016 tribunal case. He is bed-bound. He sits up every couple of hours to drink a nutrient-laden smoothie his mother, Helen, prepares from a broccoli soup base. The rest of the time, he is lying down, resting or sleeping. When he needs to, he can get himself onto the portable toilet next to the bed.
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http://www.virology.ws/2018/05/07/trial-by-error-my-visits-with-alem-matthees/

So terrible Alem had to pay such a price. Thanks @dave30th for visiting him.
 
Very powerful and heartbreaking article. Tears of sadness. So very, very sorry to hear how poorly he is now. My heart goes out to him and to his family. Such sacrifice/selflessness shouldn't have been required, absolute shame on the lot of them. Thank you for visiting him Dave and letting him know how we all feel.
 
An ambivalent read.. Great article, but devastating content. His relapse illustrates the insidious nature of this disease.. At least it sounds like his spirit is strong. Admittedly its always scary to hear when patients become so ill that they need to resort to sign language, knowing that not everyone comes back in a hurry (Whitney etc..). I hope he`ll get better soon enough, he deserves it!
 
Daisybell said:
QMUL should read that blog and hang their heads in shame.
Oh Alem......:cry:
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Quite so, all the enablers who are complicit in this, all who knowingly ignore the science or who don't care enough to take the time to look at the scientific evidence, instead believing their mates/establishment figures over the facts, they're all culpable for the continuing harm done to patients.
 
@dave30th -thank you so much for visiting Alem during your time in Australia. I wasn't able to write before because I was stunned with sadness and pain after reading your post. I knew Alem was ill but had not appreciated how much of his functioning he had sacrificed to get that data released. We have to find another way. No one should have to suffer like that.
Summer 2016 brought good news in mid August when the Information Commissioner ordered the release of the data, and from there with your help, the Pace story has started to unwind. I still think of Alem's plight though, and that of his family, especially his mother.
Once again thank you for your visits. I hope that Alem makes some progress very soon and that he knows the high regard we all have for his achievements.
 
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