1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Hillary Johnson GONE?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by flybro, Dec 12, 2009.

  1. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    She deserves a lot more than that, mate...

    And I had just written a little blurb in her blog for the first time..Didn't think it would be her last! There was certainly no indication in any of her comments there that she was gonna take off.

    Yes, we owe her a lot, but what bugs me is WE STILL NEED HER!!
  2. Kati

    Kati Patient in training

    Messages:
    1,920
    Likes:
    1,169
    that is terrible news for us. I wish there was a way to get her to change her mind. we need her.
  3. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    There is reason to suppose she will be back to her blog in the future and no reason to suspect whatever she is working on now is not ME/CFS related. She only said she would not be blogging.

    But, if she needs to write about something else for a while, as she did about her mother and her mother's passing, well, we will be enriched by that, too. Like us, Hillary must have an inner life which extends beyond this illness sometimes or it would take her soul.

    We will be here when she returns to us.
  4. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    3
    HJ

    Perhaps she needs a little R&R for herself in order to be her best to see us through.....
  5. Quilp

    Quilp Senior Member

    Messages:
    176
    Likes:
    141
    Love from Quilp

    We suffered agonising pain, left to feel more dead than alive, whilst the weeks rolled into months, the months rolled into years, and the psychiatrists rolled into town. Five year action plans, contaminated with a toxic dish of egos and internal politics were served time and time again. We're dying, and without the dignity afforded to others. Someone do something, please ! Well someone did do something, and her name is Hillary Johnson.

    Criticised for perhaps being overly zealot or critical, for not being more pragmatic; Yes, well, maybe, but how many of us needed that influence to be angry, to criticise, to lambast, to fight. She's a street fighter, an ally cat, a tasmanian devil who's will has been forged in the deepest recesses of her soul and fuelled by the passions of overwhelming injustices. She is an unstoppable force fighting an immovable object.

    Some of us have not lived a meaningful life, and some of us may not have long to live. They say that even a drowning man will clutch the smallest of straws. For many she was that straw, but a straw nonetheless like no other; for how many would follow her to the ends of the earth.

    Thank you Hillary xxx
  6. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Guess we'll have to do our own rabble-rousing while she's gone. Anybody ready to take on that job? :D Khaly?
  7. annunziata

    annunziata Senior Member

    Messages:
    111
    Likes:
    2
    Hudson Valley
    Golly, Quilp, that was beautiful and poignant. It has only just dawned on me that this disease may take my life before very much longer. It certainly inflicted years of a living death. I have some partial remission now, for which I am very thankful, while it lasts. I have always loved Hillary Johnson's feistiness and militantly impassioned stance. People have a right to be angry about this disease and the disgraceful history of its mishandling by federal health agencies. She has left a superb record of the suffering of patients, and the politics and malfeasance that attended this epidemic.
  8. JustJack

    JustJack put on yer dancin' shoes

    Messages:
    53
    Likes:
    2
    Sacramento CA
    So much help and support here

    Even being new here, I see many voices that I have followed and read for the last 13 years (was sudden onset mono/Guillian Barre 1978 - held of and on till 1997). I am alone so much of the time, being housebound too and husband working alot and friends forgetting me. Thank you so much annunziata, Quilp.

    Sometimes I worry about what I am saying and thinking. I have made so little headway myself, with my doctors, fighting for tests, never getting to Peterson et all because I have no money to speak of. I am too sad way too much of the time, trapped in mourning. I know that it is counterproductive and your voices are literally keeping me going nom. I:cool: was so defeated and yet so stubborn, I know I have been a headache to many many docs.

    Thatnk you for supporting Hillary and all she has gone trough for us, I admore her so very much and applaud her for her strength and tenacity. I know what it is to fight the Goliath and I know what it is like to be misunderstood and shut down.

    Here's to all of us here, strong voices in the darkness of ME/CFS. Finally we see a ray of light and I for one, will keep spreadding the word in my world as loudly as I can and to however will listen

    Thanks so much,
    JJ aka Jack in Sac
  9. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I just want to thank those posting, so eloquently, on this thread for make the point that dialogue about this illness is not always measured and polite because many of those speaking are desperately fighting for thier lives.

    Would any demand a drowning soul be polite and politic in their outcry?

    Thank you for speaking your truth with such courage.
  10. Samuel

    Samuel Bedbound with NO DOCTOR

    Messages:
    221
    Likes:
    2
    They are not alone in being eloquent, Koan. :)
  11. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    WildDasiy

    love this........
  12. Khalyal

    Khalyal Guest

    Hillary

    All of Hillary's blogs are still there, it's just the link to them that has been removed. But you can access them, and all of our comments, here:

    http://www.oslersweb.com/blog.htm?post=643435

    If it weren't for Hillary's epic perserverance and never-back-down attitude, how many of us would have ever known about our own disease? How much easier would it have been to achieve complete psychologization of this illness?

    Hillary has never waivered. She has stood strong through all of it, even as she suffered with illness, even as her book became trivialized as "irrelevant" and could be bought on Amazon for 99cents, even as Reeves took giant steps towards reducing us all to stress-incompetent ne'er-do-wells.

    Trust that she did not "realize she went too far", and that she is not anywhere near done.
  13. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    ... I trust!
  14. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    11
    New Zealand
    Such writers here

    You guys can write! So many different styles, such beautiful ways with words.

    Thank you for expressing yourselves so freely, so expansively.
  15. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    I hope Hillary is lurking and reading these posts, or she at least knows she is important to us.
  16. sunshine722

    sunshine722

    Messages:
    16
    Likes:
    0
    Blog back on main page

    Just noticed Hillary's Blog tab is back on the main page of her site.

    http://oslersweb.com/
  17. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I hope that means there will be a new blog post! :D
  18. sunshine722

    sunshine722

    Messages:
    16
    Likes:
    0
    Hillary's twitter

    oslersweb Merry XMRV XMAS!
    4 hours ago from web

    Then on blog she posted a link to this You Tube

    Link to Blog
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    I too wish there were millions of HJ's. I have read Osler's Web five times. Every time I am awestruck that someone with ME could have reported this and written such a great book. She is a true hero and a rock star! We love you, Hillary.
  20. Summer

    Summer Senior Member

    Messages:
    175
    Likes:
    0
    WPI Facebook just posted a statement by Hillary Johnson about the UK studies. I love this part:

    "This is not a tennis match; it is not a ping pong tournament.
    Not all scientific inquries are equal, nor all all scientists."

    So glad to see something from Hillary!

See more popular forum discussions.

Share This Page