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WPI UK XMRV testing/study

Discussion in 'XMRV Research and Replication Studies' started by JAS, Mar 5, 2010.

  1. Knackered

    Knackered Guest

    I've emailed them to ask where the closest one to me will be, if it's close enough hopefully I'll be able to get someone to take me, if not they'll have to visit. I hope it's close though, I'd rather go than have them to have the added cost of coming out.
  2. coxy

    coxy Senior Member

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    yes i got it to! Does anyone know out of interest how many 100's of uk patients are involved in this, did she include everyone that wanted a test or stop at a certain number?
  3. bullybeef

    bullybeef Senior Member

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    North West, England, UK
    Without sounding pedantic, there is a confidentiality notice at the bottom of the email. I know it doesn't say much and everyone has probably received the same one, but I don't think it is available for reposting.
  4. Countrygirl

    Countrygirl Senior Member

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    UK
  5. mermaid

    mermaid Senior Member

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    Cornwall, UK
    I got my email too today from the lab. I am not sure whether I will make the centre either as I live in a remote place and we have no car and any public transport is difficult and tiring, but I have emailed to explain this.

    Somehow I thought that the numbers were limited to 200 people but I am wondering if I imagined that figure or read it somewhere else on another forum.
  6. Knackered

    Knackered Guest

    I think it's more to protect personal identity, if you don't mind people knowing you're getting tested for XMRV I don't suppose it matters.
  7. free at last

    free at last Senior Member

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    Study now in motion

    Yep the studys now in full swing it seems, i also got this message today, and am awaiting further information as you all are.

    If i test positive i will be sharing this information with the group. I hope others who can, will do similar, as this will be a direct response to the two failed studys already done in the uk. Really have no idea whats going to happen here, If a large amount will test positive, But i trust Judy M, and i suspect we will.

    I guess your all feeling the emotions i am, ( some probably more than others ) as my condition after 15 years has become fairly good now, I am partly recovered, but still get intermittent symptoms, But generally nothing like what i was experiancing in those very bad dark days at the start of this illness, If XMRV is the culprit i suspect my immune system has over time figured out how to control this sneeky virus. And if thats true, then i hope that will also be true for others that may just still be in those early ( really terrifying ) days of the illness.

    Theres hope people, my terror got better. But i am still traumatized by those memorys. even though my life has improved so much.

    You know in a kind of messed up kind of thinking, i almost want to test positive ( how nuts is that simon w )
    Because when i go to my grave i really would like to know, why i suffered so badly, and what caused me to feel like i was going insane. and if i ever relapse, treatment might become available, if it is our destinys to have this virus, then no wishful thinking is going to make it go away,

    If i test negative, then im back to square one, and i will be saddend knowing i may go to my grave never knowing why this ever happened to me. Maybe not knowing is actually scarier than knowing i have this virus.Though the virus is in itself quite scary is it not.

    Yes im confused by these thoughts, i guess you all are too.

    How many have this duel type of thinking here ? Most im guessing. Bring it on, im ready now, And Judy thank you from the bottom of my ( our hearts ) for giving us this chance. She is one special lady. Feels like she has been sent to us doesnt it folks. I will post when i know the results. Excited you bet. But worried and confused too. Judy xx
  8. coxy

    coxy Senior Member

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    I feel exactly the same. i will be soooo confused if my test is negative.
    With having 2 of our children ill BEFORE me it's the only explanation i've come up with, smeone transmitted the XMRV to me before having children, i don't feel i was born with it otherwise me/cfs would of been triggered at an earlier age for me i.e when i had glandular fever or flu in my teens.

    IF i'm positive though i will be left with the frustration or not knowing who in the family is XMRV positive aswell, presumebly th 2 me/cfs children, but what about the other 2 children and my husband?

    Then whoever is positive has got to decide in the future whether taking anti virals is the best route for them, bearing in mind some of the horrible side effects.
    There must be quite a few sufferers like myself and my children who have a VERY restricted life due to me/cfs, but at least can go out occasionally (will get payback, but it's worth it), who may think it's safer to carry on as they are and not risk getting worse!!! Surely there are many of you who have thought of this. I would have to try to persuade my children to take medication that may make them feel a lot worse to start with, that is a hard job for any mum, believe me!!!!

    I
  9. Adam

    Adam *****

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    Sheffield UK
    Anyone else who emailed Judy M not got an email from phlebotomy company?

    I emailed Judy M about midnight on the Friday when the news broke about the UK study and got an email back a few hours later saying they just needed contacts details and I would here more later.

    I wonder if they have put a cap on numbers? If the costs are say around 200 to 300 per person it soon adds up.
  10. fds66

    fds66 Senior Member

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    I haven't got an email from the phlebotomy people either Adam. They might be doing it in regions. I did get a reply from Judy Mikovits saying I would be in the study .
  11. Diva55

    Diva55 Member

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    UK
    No mail here either. But we don't know how they are organising it. Maybe grouping people in regions and if you don't fall into a convenient region group thinking of adding you in later? Just a guess.

    Must be hell to organise if they are dealing with a lot of people who most probably want home visits.
  12. Knackered

    Knackered Guest

    I'm in West Yorkshire if it helps.
  13. sproggle

    sproggle Jan

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    Teesside, England UK
    Please don't worry (I know it's easier said than done!) if you've not been emailed yet.

    As the email states they are doing it by region, I'm sure if you had email confirmation of being in the study you will not be left out!!

    :hug:

    Jan xx
  14. ukxmrv

    ukxmrv Senior Member

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    Is anyone happy to say which area they are in roughly (just to determine where is being done and to help people who have not had a reply)?
  15. sproggle

    sproggle Jan

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    Teesside, England UK
    Cleveland, North Yorkshire

    Maybe Yorkshire is one of the regions? Would be pretty big region, if just one Patient Service Centre were to cover it. Think that would result in high numbers needing home collection.... All just speculation of course! :D

    Jan xx
  16. Adam

    Adam *****

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    Sheffield UK
    I'm in Sheffield. Thanks all those who have posted.

    I feel a bit sick not knowing if I am in, not knowing if I will be positive by PCR, by serlogy, if I want to be positive, how I feel if I am if am not...all been said a thousand times before I know. But it's all so damn strange - 14 years on from all those damn blood tests, MRI's, two lumbar punctures, nerve condutivity tests, ECG's this scan that scan - promised steroids - never happened -promised muscle biopsy - never happenned - and now XMRV. A virus. Could have told them it was a virus 14 years ago. Geez it pisses you off when you think about it - which is why I don't. Or haven't until now.

    Oh hell.

    Let us know about Neuro visit if you are up to it SuperSprog.

    Head spinning. In need of caffeine/nicotine - alcohol (my fav med will just have to wait till nearer bed time) going quietly nuts - must check in on chat and talk nonsense there instead of here -wish I was a mediterranean island drinking wine and reading a book, wishing I could do a Sam Tyler and go back to 1995 and figure it all out and not be where I was wherever that was when I got this damn thing and be somewhere else know instead - except for all the kind folks on here I have met and who are so kind - and are the only friends I got.

    Adam in Sheffield in bits. Had a rant - feeling 5% better than before the rant
  17. fingers

    fingers Senior Member

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    SW Endland
    At least one third of the SW Endland population has been contacted.
  18. fingers

    fingers Senior Member

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    SW Endland
    Yo, Sheffield!!!

    I'm glad you mentioned the alcohol. This is my favourite med too, and I also restrict it to evening, otherwise I'm all over the place. A lot of people say they can't tolerate it. In the first year or so, I couln't even face it, but got to tolerate it gradually, and now I have a theory that it reduces my inflamation and acts as a painkiller...... I do suffer the side effects the next day though. I'm talking good old English real ale here (they have some good ones up your way, Ad)

    5% better than before the rant eh? Have you told Wessers? Must be worth a 5m study!!!!????

    Take care, mate, and don't worry if you don't get tested this time. It won't matter in the long run.

    F
  19. free_spirit

    free_spirit

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    Merseyside, UK
    I got my email thiis morning too.
  20. sproggle

    sproggle Jan

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    Teesside, England UK
    :hug: :hug: No words Adam just hugs :hug: :hug:

    I updated the thread about my appointment but overall I'd give him about 7 out of 10 lol! Didn't tell him that though! :D
    Jan xx

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