1. Patients launch a $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!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

UK testing.

Discussion in 'XMRV Testing, Treatment and Transmission' started by Knackered, Jan 20, 2010.

  1. Knackered

    Knackered Guest

    Both Min and myself have asked how we could get tested for XMRV and neither of us have received a reply as far as I'm aware.

    She has said, like me, she doubts her doctor would allow her to take the tests though him, so how could we get the tests done? Do any of you know?

    Edit:
    When will the VIPDX website be back up?
  2. Countrygirl

    Countrygirl Senior Member

    Messages:
    765
    Likes:
    411
    UK
    I would like to know too. Was there a rumour that the Breakspeare was organising tests? I wonder if Dr Sarah Myhill would know?
  3. Sparklehorse

    Sparklehorse *****

    Messages:
    28
    Likes:
    0
    UK
    Hello,

    I don't know if you are aware of the following website but it was put up by a fellow UK ME patient to try and offer some information on how to go about getting tested for XMRV in this country. It's only a basic site giving basic info and advice but it's being done by someone who is sick themselves. I think you have to be able to get to a lab in London on certain days of the week in the next month or so and then the blood is shipped to the USA to be tested. Anyway have a look for yourselves. Hope this is helpful. I'm not up to getting up to London myself and will probably wait a bit yet anyway before spashing out what is a lot of money for me. Good luck to those that do do it. Here's the link:-

    http://www.xmrvtesting.co.uk/
  4. Min

    Min Senior Member

    Messages:
    1,040
    Likes:
    739
    UK
    Thank you both, tests in London are great for those who can get there but we more severely affected cannot. I hope the test becomes more widely available very soon, I could just about manage to reach Bristol on a good day with the wind in the right direction.
  5. Knackered

    Knackered Guest

    I can't get to London either, it's 200+ miles away. Maybe some British labs will be able to do the testing later in the year? I hope so!
  6. Katie

    Katie Guest

    I think we're lucky that anyone can get tested here at all. The lovely person with ME who has set this up did it completely off their own back and will truely help our cause here in the UK. I am afraid the severely effected will have to wait but they will be waiting less because of what this lovely person has done. I've been severely effected and I know this would drive me crazy if I couldn't get tested but we've got to hang in there and let things take their course. If VIPdx are licencing the test the British labs are going to want to see they can make some money off the deal, getting reports of positive tests through Biolabs will help in that aim and counter-act the IC study.
  7. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    931
    Likes:
    90
    London, UK
    I believe one of the people who tested positive had their blood sent down by train instead of coming to London. So it would be take a bit of organizing, but it could certainly be done for someone who was too sick to travel to London.
  8. Min

    Min Senior Member

    Messages:
    1,040
    Likes:
    739
    UK
    I appreciate that it's available here at all at such an early stage, but how are people to get their blood taken to send off if their GP practice refuses to do it?
  9. Getting to London withouht going there

    Hi to everyone.

    I just wanted to let you know that in the current climate of no domestic ability s to text for XMRV you don't have to get to London to get an XMRV test, you have to get your blood to London. :cool:

    There is only one realistic way in the UK to pull this off (unless you have a sympathetic GP who will let you 'use' the practice
    nurse or even allow a home visit).

    Here is a tiny guide how to do it in the UK:

    Getting the blood out:

    Arrange a private Nurse visit to your house, I did this. Cost was 30.
    How? Contact the BNA. (British Nursing Association). They are very helpful
    and will put you in contact with someone in your region. It may take a few attempts
    but patience is a virtue.


    Now, if this is not available, or if you are mobile outside the home, and/or can travel in car/ambulance.

    Phone nearest private Hospital or private GP clinic and pay to see a private consulation with a GP.
    This will be problematic to some degree, unless you have a good relationship. Not impossible, just tricky.
    Here you need to explain the situation, and get access to either the doctor themselves taking the blood
    there and then, or arranging a Nurse. Cost would be potentially around 200 or more.
    It would be advisable to phone first explaining the situation, rather than just go to the 'booked' GP

    Getting the blood to:

    Ask parent/carer/friend to travel to central London via any means possible.
    Most sensible due to traffic congestion and extreme lack of parking (short of finding an NCP car park
    or indeed 'booking' a car space) would be to use the train.

    Biolab is near St Pancras Central Station. Either get off here from your destination and used Taxi/Walk/Tube train.
    If using the tube train, get off at Regents Park and walk/Taxi. This is much quicker than walking directly from
    St Pancras main station.

    Or

    If unable to find an individual and if funds allow - book a motorcycle courier or contact a medical courier company.
    The costs may be considerable and may 100's of pounds. Hence the 'train' route method above.



    Understanding time limit:

    From looking at the VIPdx form, I test positive despite the blood taking over 24hrs to get there.
    The point is to limit as much as 'wasted' time as possible. If train is quicker than car, take then train.

    For reference my blood took 5hrs to get from my arm, to the clinic in London.

    The Nurse left the house, and within 1hr my helper was on a train, cuddling my blood safely.
    No need to freeze, no need to 'spin'. The company in London can do that.

    So organise, plan and think well ahead how you will get the Nurse/or travel to a private GP/Hospital
    to have blood drawn and who is taking over from there. Is a seperate person then being handed your
    blood and going ahead to a train station whilst you return home? Try and save time.


    Appologies if this is all 'obvious'. I just want to let you know that even if you're bed bound, with forward thinking
    and (importantly) money and ability for others to help you - one can get their blood to London without leaving
    your bedroom.

    Thank you and Good Luck on any missions you go on!
  10. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    hi, that's all very helpful regarding getting blood to London, thankyou.

    I was wondering if all of you that have had the XMRV test, have had to stop taking all medication/supplements before having your blood drawn? Does anything interfear with the result?
  11. Katie

    Katie Guest

    Are you trying to get your GP to send off directly to biolabs? I haven't heard of anyone doing it that way. Has your GP refused you?

    In my case (travelling to Biolabs in London) I didn't tell my GP at all, I wrote him a letter explaining the ins and outs and included a few links of interest and said that I looked forward to discussing the results with him. I also said that I knew the results were not definitive and would take an NHS test should further research indicate that it was necessary.

    If you could find a willing private lab then you don't need your doctors permission, I certainly didn't need it and that was news to me!


    Just seen Dys post, blooming brilliant. Where there's a will there's a way!
  12. Katie

    Katie Guest

    Antivirals (eastern and western) should be stopped at least 14/15 days beforehand. If you are serious about getting tested the xmrvtesting will tell you what to do. I'm on very little meds so I didn't have to worry.
  13. My pleasure. I unfortunately appear to be locked out of editing my own posts though, so ignore the splllling mistrakes. :Retro wink:

    Regarding your question I am told by the select few people on AntiVirals (People in the USA), that this may
    affect the test result. I would imagine it would be sensible to confirm this by a quick phone call or email to VIPdx
    themselves, rather than go on (possible) Internet rumour alone.
  14. joyscobby

    joyscobby Senior Member

    Messages:
    154
    Likes:
    0
    getting to London

    I am over 500 miles away. I am severand getting around in London was an nightmare. It is also an additional expense. Travel costs and accomodation etc. The tube is a nightmare as not all have disabled acess and have to manover stairs. Taxi's are not cheap and have to be sought. A car maybe an option if you have a bluebadge and somone to drive. London is so busy as well the general noise, dirt, hustle in bustle.

    Before I was ill I used to go to London a lot and jump on and off tubes etc., often with 2 young children. My trip to London reminded me how unwell I am. It was a price worth paying both financially and in health. This has to be a judgement for each individual.


    Another option may be is for someone to organise something similar locally. Get a group together in your region. Contact a local lab etc. ensure they can corrier to VIPdx etc. speak to VIPdx about it etc.

    The London lot was done, as dys said, by someone who is very ill themselves.

    Without my determination with the support and help i had I would never of made it.

    I owe a big thanks to my family and friends.
  15. JAS

    JAS

    Messages:
    70
    Likes:
    0
    UK
    As per Katie, the facility at Biolab was very kindly set up by someone who is ill themselves, but spoke with VIP and arranged the testing and I am sure everyone else testing and to be tested there are extremely grateful to her for doing this for us. I don't think that any other country bar the USA and Canada have set up any arrangements for testing other than the UK as I have seen people worldwide requesting testing, New Zealand, Australia etc. In addition I have seen reports that CFS sufferers are having to wait a little time in America and Canada before getting tested as VIP are getting pretty busy. For me, I called up Biolabs on Friday who said that they could fit me in on the Monday and so I have to say that I feel we are very lucky here! As per Dys I am sure there are no reasons that with careful planning why blood couldn't not be couriered to Biolab to have done to it what needed to be done before heading off on its way to Reno...where there is a will there is a way and all that, but I am not scientific and cannot confirm that.

    I am lucky, I am just over 200 miles away but my husband drove me down to Biolabs and dropped me off outside, parking in one of the nearby streets wasn't too much of a hassle either..make sure you have a mobile phone with you as you have to call up to pay for parking though. Re the GP, this is a private arrangement/facility so I don't think they can stop you, I actually didn't have time to discuss this with my GP prior to all this happening, but I did arrange an appointment for the Tuesday after the Monday to go and tell him what I had done and actually what it is all about...he hadn't heard of it but was receptive, I gave him the website address for WPI and a couple of articles on it...I also mentioned about the Imperial College testing too..and that they didn't replicate the study!. It is good to have the GP onside as afterall they will be receiving your test results!

    It is very early days re the testing, the testing is still currently experimental and I am sure that it will be refined and revised again in the near future (western blot test etc). I just wanted to say to Dys congratulations (you know in which way I mean!), take your time to process this, it is a very big deal and XMRV has been an enormous influence on the way your life has been shaped so far. I am lucky in that I was 41 when I came down with this (now 43) and I have improved from being 'sofa bound' as I call it for the first part of the illness, but goodness knows what it would have been like having it as a child and my heart goes out to all those who have had their childhood stolen from them by this dreadful disease. Take good care x
  16. Mithriel

    Mithriel Senior Member

    Messages:
    563
    Likes:
    36
    Scotland
    It has turned out to be so important that people around the UK are positive that we owe a real debt to the organiser of these tests.

    Now that some people are positive it will make it more desirable for someplace like Biolab to get a license from WPI to do the test once they start handing them out.

    I don't see it being that long.

    Mithriel
  17. Mithriel

    Mithriel Senior Member

    Messages:
    563
    Likes:
    36
    Scotland
    No editing and I forgot.

    We also owe a debt to the people who struggled to get the test done. We are all benefiting from it.

    At the very least I feel happier than I did and it is one in the eye for the weasels.

    Mithriel
  18. fds66

    fds66 Senior Member

    Messages:
    225
    Likes:
    2
    I too am grateful to all those pioneering people who are having those tests done now. I know how hard it is physically, emotionally and financially to get those done.
  19. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    Well done for going to get tested. Your case sounds a bit similar to mine(apart from i have 2 children with it). i also got ill at your age 2 years ago. I mentioned to my GP about XMRV and he to hadn't heard of it. He said GP'S are the last to hear about any new science studies. i to gave him the wpi web address and some info, he was very interested, and he remembered when Betty Dowsett came up with some similar findings years ago when he was at the same training college(not sure if that's correct). I'm being a bit of a chicken at the moment regarding getting tested, especially if i then had to talk the children into having a blood test, they are both quite understandibly very anti hospitals etc.

See more popular forum discussions.

Share This Page