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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Griffith Uni Australia new press artivle

Discussion in 'Other Health News and Research' started by Allyson, May 23, 2013.

  1. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    667
    Australia, Melbourne
    alex3619, WillowJ and Simon like this.
  2. Sasha

    Sasha Fine, thank you

    Messages:
    7,607
    Likes:
    5,649
    UK
    Done - always good to click through and give a good story the traffic.

    Interesting what they say about having access to severely affected patients.
    Allyson likes this.
  3. Simon

    Simon

    Messages:
    1,254
    Likes:
    3,752
    Monmouth, UK
    Now that it very interesting indeed, since this group has not been studied - while for many other conditions the most severely-affectected patients are of seen as of great value to researchers as potentially they have the 'strongest' signal.

    However, there may also be confounding issues with a highly-deconditioned patient group as long-term bed-rest in healthy people does lead to many changes in the immune system (documented by NASA and others looking at long-term effects of bed-rest as a model of weightlessness in space).
    Allyson likes this.
  4. WillowJ

    WillowJ Senior Member

    Messages:
    2,892
    Likes:
    2,294
    WA, USA
    do you know what changes specifically?
    Allyson likes this.
  5. Simon

    Simon

    Messages:
    1,254
    Likes:
    3,752
    Monmouth, UK
    WillowJ and Allyson like this.
  6. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    667
    Australia, Melbourne
    willow j and Simon

    i DO know that when astornauts complete a mission and return to eart there is no heroic/triumphant march out of the space lab

    why ? because they cannot stand up and have to be carried out bodily until they re-gain condition.

    Not sure of all the details or how long it takes to re- condition.

    also they are working on suits for them to wear that may help us

    cooling compression clothing to help them maintain blood pressure and stay cool while wearing it. this would realy help us with OI issues.

    if we got the right comfortable superman suits we migt be like superman all the time instead of reverting to Clark Kents after a breif episode up and about.
    WillowJ and Simon like this.
  7. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    667
    Australia, Melbourne
    yes that is great to see Sasha; they are a wonderful team doing great work so that s really heartening to see.
    Here is the link to their fb page for those who want to stay updated.

    https://www.facebook.com/#!/pages/N...erging-Diseases-NCNED/301252900007181?fref=ts

    it strikes me thaat in Australia if youhave say a bad motor bike accident you will get weekks of intensive care hopital care and months of rehab sosting hundreds of thousands of dollars - all free.

    Meanwhile we are as totally debilitated as that rider .... and we barely get the time ot recite our full list of symptoms before being shown the door often.....

    (meanwhile the rider can then get back on the bike and do it all again)

    sad really and hope this will change
    taniaaust1 and Sasha like this.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,742
    Likes:
    4,613
    Sth Australia
    Umm 250, 000 affected with ME/CFS... I wonder if they are going by the Canadian Diagnostic criteria? Wikipedia says we have 23 Million people in Australia.
  9. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    401
    Upstate SC, USA
    We only have a million in the US conservatively

See more popular forum discussions.

Share This Page