• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

For Alem Matthees

char47

Senior Member
Messages
151
If this is inappropriate or in the wrong place then i trust the mods will sort/move it.

Having read somewhere on the boards today (I'm sorry I'm not sure who said it or on which thread & no strength to go back & find it, but it was on one of the recent positive PACE debunking related stories)
that Alem's health was really not good at the moment, & as we celebrate all the great things starting to happen with the NYT article, the open letter to Psychological medicine, the reanalysis paper & it going open access (thanks MEA), & the excellent rejoinder to the PI's nonsense in response... i thought it would be nice to have a thread going alongside where we could send our prayers/thanks/positive healing vibes to Alem, without whose efforts & sacrifice none of this would be possible. So that maybe he or someone connected to him could come on here & see our messages & know how much we appreciate him & are praying/hoping for his swift recovery/improvement ...

here's mine

Dear Alem, just wanted you to know you are in my thoughts and prayers & will continue to be.
You have sacrificed your health for the good of millions of us getting that data released & there will never be words enough to express my gratitude. The perfidious horror that is PACE is finally starting to be seen for what it is, things are beginning to change & none of it would have been possible without your FOI, your tenacity & courage. I am so very sorry that you are paying such a high price as a result. The ME community will never be able to say sufficient thank you to you, but just know we are with you & are praying for you & hoping you will make an improvement soon. :heart:
 

Invisible Woman

Senior Member
Messages
1,267
Alem, I really hope things improve for you soon.

You have shown a great generosity in the efforts re the PACE FOI and so many positive things are being built on the foundations of your efforts.

I am truly grateful for everything you have done and deeply sorry for, what is bound to be, a very high personal cost to you.

A thousand blessings to you.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Dear Alem,

I'm very sorry to hear your health is so poor at the moment. Your David and Goliath battle must have taken a dreadful toll on your health and I want you to know that your courage, tenacity and bravery will never, ever be forgotten by the people whose lives you have touched.
I wish everything good for you and hope and pray that your health improves soon.
Much love from a virtual stranger - but nonetheless a forever friend.
 

Jan

Senior Member
Messages
458
Location
Devon UK
Thank you so much for everything you have done Alem, you are a true hero to your fellow ME sufferers. I am so sorry to hear how badly your health has been affected by this fight for justice. Wishing you relief from your suffering, you have paid a very high price for exposing the truth.

Bless you :hug:
 

Laelia

Senior Member
Messages
243
Location
UK
Thank you Alem for your heroic efforts in getting the PACE trial data released. The PACE scandal has been getting a lot of media coverage lately and this largely down to your efforts. I'm very sorry to hear that your health has declined recently. Sending love and thoughts from a fellow ME sufferer, all of us in the ME community are praying for you. :tulip:
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Thank you so much for your expert work and tenacity in exposing the horrors and lies that are represented by the 'PACE' trial, Alem.

I sincerely hope that you recover from the consequences soon.

I think that all sufferers from this deliberately-misunderstood illness deserve compensation, those like you who have participated in exposing the lies being among the first.

I sent a letter to AfME (the UK's Action for ME) on 14th March 2011 which I have copied into my blog here but I'm not sure if you can access it, so I reproduce it below (please excuse grammatical errors)

"Dear AfME,

I am just skim-read your article about the PACE study on page 4 of the Spring issue of InterAction, and hope that your scientists will be producing a detailed critique of the study.

A very quick look at the main study paper reveals a number of areas which merit question. For example, an overwhelming proportion of people initially approached to participate were excluded, and the expectations of those who did participate appear highly atypical, but concur closely with outcomes. The study sample may have been an overly self-selected sub-group. It is likely, for example, to have excluded people who have previously tried GET and experienced adverse effects, as in your own studies.

Unfortunately I cannot spare the time to analyse the study thoroughly myself without remuneration, being a sufferer myself who is struggling to make ends meet and suffers severe adverse effects from over-exertion."

I don't think I received any reply. You certainly did!