David Tuller Trial By Error: My Visits with Alem Matthees

Poor Alem. That's horrible. It's upsetting to know that there must be a significant number of patients who are so severely ill they have even difficulties communicating with the world.

 

The note writing... what a devastating visual.

 

What Alem Matthees managed to pull off with his debilitating ME/CFS is truly an exceptional accomplishment. So incredibly sorry to hear about his deterioration, he deserves so much better.

 

I weep for Alem and for us.

 

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.

 

@dave30th Thanks for visiting Alem, we owe you (yet another) one

 

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!

 

Such a powerful article and so well-written. THank you @dave30th for going there, for writing this, for doing all this.
Writing through tears, and gratitude.

 

QMUL should read that blog and hang their heads in shame.
Oh Alem......

 

Just heartbreaking. Poor Alem.

Thank you for visiting him @dave30th

 

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.

 

When I read, this all I could picture was Alem on his bed and Peter White on that picture with the princess, like side by side picture.
Is the perfect picture illustration of the fracked up situation.

 

The worst part of this illness? The disease that is the BPS fuckwits themselves.

BPS bullshit can be directly correlated with worse outcomes in 100% of all patients, according to a study I just did by questioning myself in a mirror.

 

I see from @Graham s thread https://www.s4me.info/threads/alem-matthees-birthday.3998/
that May 12th (#MillionsMissing) is Alems birthday; any way that people on#MM protests could have the odd 'Happy Birthday and thank-you Alem' posters or something? I feel we all owe him.
@JenB

 

yes, Alem's mum said in an e-mail that that's Alem's birthday. It would be nice to orchestrate some demonstration of support for him, for his family as well as him.

 

Please email ben@meaction.net about this

 

@Graham , I believe that this is a request for you to email Ben to discuss what can be done via MEAction, in regard to celebrating/marking Alem's birthday.

 

Just spotted this comment on the blog.


Link to blog if you want to revisit it, http://www.virology.ws/2018/05/07/trial-by-error-my-visits-with-alem-matthees/

 

@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.