Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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For Alem Matthees

Discussion in 'General ME/CFS News' started by char47, Mar 23, 2017.

  1. char47

    char47 Senior Member

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    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:
     
    RuthT, Zombie_Lurker, MeSci and 58 others like this.
  2. dangermouse

    dangermouse Senior Member

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    Heartfelt thanks :hug: to Alem xx
     
    MeSci, Daisymay, Woolie and 12 others like this.
  3. Invisible Woman

    Invisible Woman Senior Member

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    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.
     
    Binkie4, slysaint, Izola and 14 others like this.
  4. Keela Too

    Keela Too Sally Burch

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    Alem Heartfelt thanks for your courage and determination. Wishing you a speedy return to a better place health wise xx ❤❤❤
     
    MeSci, Binkie4, Laelia and 10 others like this.
  5. JoanDublin

    JoanDublin Senior Member

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    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.
     
    MeSci, Binkie4, Jan and 14 others like this.
  6. Nielk

    Nielk

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    Very thankful to Aleem and praying for better health.
     
    MeSci, Binkie4, Jan and 10 others like this.
  7. Mel9

    Mel9 Senior Member

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    We are so grateful for your enormous efforts.
     
    MeSci, Binkie4, Jan and 10 others like this.
  8. Esther12

    Esther12 Senior Member

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    Thanks for all your amazing work Alem! Hope you start feeling better soon.
     
    MeSci, Binkie4, char47 and 10 others like this.
  9. tinacarroll27

    tinacarroll27 Senior Member

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    Thank you Alem for the amazing work you did exposing the PACE Trial! You are in my prayers!! You are an amazing person!!!Get well soon!
     
    MeSci, Binkie4, char47 and 10 others like this.
  10. BruceInOz

    BruceInOz Senior Member

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    Thanks Alem. Hope your health improves soon.
     
    MeSci, Binkie4, char47 and 9 others like this.
  11. RogerBlack

    RogerBlack Senior Member

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    May you get better soon. May we all.
     
    MeSci, Binkie4, char47 and 7 others like this.
  12. Daisymay

    Daisymay Senior Member

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    Extremely grateful for all you're amazing work to expose the PACE trial, but just so sorry it's been at the expense of your health, sending love and every wish for improving health x
     
    MeSci, char47, Jan and 8 others like this.
  13. Jan

    Jan Senior Member

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    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:
     
    MeSci, Binkie4, char47 and 10 others like this.
  14. Laelia

    Laelia Senior Member

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    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:
     
    Binkie4, char47, Jan and 6 others like this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    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!
     

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