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.

WPI wants our blood for a study

Discussion in 'Active Clinical Studies' started by Sushi, Jan 31, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,521
    Albuquerque
    They have a good sized research grant (looking for causes I believe) and need blood samples from physician diagnosed ME/CFS patients. I am not sure which diagnostic criteria they are using but if you are willing to donate some blood, you could call them for details: 775-682-8250.

    Sushi
    beaker, Valentijn, vli and 2 others like this.
  2. Christopher

    Christopher Senior Member

    Messages:
    442
    Likes:
    167
    Pennsylvania
    Another RV? :p
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,521
    Albuquerque
    Nope, apparently their grant gives them a lot of leeway to look at different things.

    Sushi
    Last edited: Feb 1, 2014
  4. Christopher

    Christopher Senior Member

    Messages:
    442
    Likes:
    167
    Pennsylvania
    You see KDM there?
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,254
    USA
    Excellent news! I will call next week and offer my and my daughter's blood.

    ETA: I would think they would want to get the blood from established specialists to ensure that the patient is properly diagnosed. Perhaps we need to consult our specialists rather than WPI directly...?
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,521
    Albuquerque
    Yep! Great appointment.

    Sushi
    beaker likes this.
  7. rosie26

    rosie26 Senior Member

    Messages:
    989
    Likes:
    1,183
    NZ
    You guys are so lucky to live so close to these studies. I wish I could be in a study. :(:)
    svetoslav80, MeSci and aimossy like this.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,521
    Albuquerque
    I think it is question for WPI--they are the ones with the grant.

    Sushi
    beaker and SOC like this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,164
    Likes:
    4,428
    australia (brisbane)
    U living in australia's most southern state u shouldnt miss out on the findings and benefitis of these studies.
    Isnt there a kiwi doc/researcher doing a big study? I think his daughter has cfs/me?
    aimossy and rosie26 like this.
  10. rosie26

    rosie26 Senior Member

    Messages:
    989
    Likes:
    1,183
    NZ
    NZ, Australia's most southern state, lol. We are close but not that close :Dhehe x heapsreal.

    I missed out on Prof Tate study, I think it has started and there was a small participant number - so probably wouldn't have got a look in anyway.
    I will ring my ME doc on Mon/Tues and put my name down for future studies - why have I not thought of doing this before ? - brain inflammation :bang-head:
    beaker, merylg, aimossy and 2 others like this.
  11. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    288
    Massachusetts
    I will not participate in any WPI study until they regain my trust. They lost it and it will be very difficult to ever gain it back.
    Wildcat and Countrygirl like this.
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,254
    USA
    I doubt that's a problem. There's plenty of other people willing to participate in research that might benefit the patient population. Your blood is not necessary, so if you're uncomfortable there's no reason to participate.

    I, for one, don't expect to come to harm from donating blood for research done by DeMeirleir or Lombardi, while there's potential for it to benefit us all.

    Now if they were doing some CBT or GET study, I'd be right behind you running away as fast as possible. ;)
    beaker, MeSci, Valentijn and 2 others like this.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,164
    Likes:
    4,428
    australia (brisbane)
    Its a shame we havent heard much about tates research. Any chance u could maybe start a post on thus with your local knowledge?
    rosie26 likes this.
  14. rosie26

    rosie26 Senior Member

    Messages:
    989
    Likes:
    1,183
    NZ
    There was a thread started some months back on Prof Tate's study. Will check with @aimossy it she knows anything more regarding what is happening there. :)
    heapsreal likes this.
  15. aimossy

    aimossy Senior Member

    Messages:
    1,906
    Likes:
    2,316
    NZ
    Hey there @heapsreal and @rosie26. Last I heard a couple months back I was told it "is going well" from a source close to the people involved, and a few weeks back it was mentioned in our association magazine that we would be getting an update in our next magazine which will be sent in march.
    As Rosie said it is a small cohort of I think 10. I am not sure what the criteria is either but I am I think confident in saying that Prof Tate is a quality research man and hopefully this is like a pilot study.
    I am really interested in what he is up to so if anything comes out and if the thread on it hasn't been updated with info already by someone, I'm positive Rosie or I will try to.
    Hope that doesn't sound like I'm an authority on what's happening with things because I am certainly not!! Just trying to keep in the loop.:nervous::)
    Sorry if I hijacked thread!:)
    beaker, ukxmrv, rosie26 and 1 other person like this.
  16. Wildcat

    Wildcat Senior Member

    Messages:
    685
    Likes:
    684
    .

    .

    What the bloody hell have the WPI done with My Blood , that I donated to the WPI via a London Hospital in 2010 ???

    It was part of my body!!!


    The WPI do not have the Right to take my blood, and then blather and deny that my blood had any part of their so called 'research project'. Or did it? We never found out what happened to the UK patients blood samples, or the funding.

    .

    It appears that US Lobbying Nevada Politics got in the way of ME Biomedical research!!!

    .


    Us UK patients have been Effed over from every direction, again and again!




    ..
    Last edited: Feb 1, 2014
    JT1024 and Countrygirl like this.
  17. Countrygirl

    Countrygirl Senior Member

    Messages:
    777
    Likes:
    455
    UK
    Absolutely Wildcat! Hundreds of us gave our blood and our money...........some gave thousands of pounds. It all vanished and the donations given by patients who could ill afford it was not used for their designated purpose and NOT returned. Where is it? The UK patients were treated appallingly by the WPI. Most were extremely ill and endured severe relapses to journey to collection venues to send their blood sent to them.

    I would not trust these people with either my blood or money. They have proven that they are thoroughly untrustworthy, I am sad to say.

    Who is going to carry out the research? Have they appointed a reputable scientist to undertake this work ?:eek: Have people forgotten the events of 2011 and what was revealed?

    To say we feel betrayed by the WPI is an understatement

    Countrygirl
    Last edited: Feb 1, 2014
    JT1024 and Wildcat like this.
  18. aimossy

    aimossy Senior Member

    Messages:
    1,906
    Likes:
    2,316
    NZ
    what the!!!!? woaaah! :(
    that's pretty concerning and sounds a horrid thing to go through wildcat and country girl.
    Wildcat and rosie26 like this.
  19. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,969
    Cornwall England
    Hi Sushi,

    If they have a grant then presumably the exact nature of the study has been approved and details can be found somewhere? I don't suppose you know what it is they will be studying, do you? Thanks :)
    rosie26 and beaker like this.
  20. Wildcat

    Wildcat Senior Member

    Messages:
    685
    Likes:
    684
    .

    .
    Well, Countrygirl. It appears that the WPI's appalling behaviour, and their refusal to be accountable for the blood samples they collected from UK patients, and their refusal to be accountable for the funds that were donated to WPI in 2010 and 2011 by hard pressed patients and carers, is all now being swept under the carpet and forgotten about.

    ..

    .
    Last edited: Feb 1, 2014
    justy, JT1024 and Countrygirl like this.

See more popular forum discussions.

Share This Page