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XMRV Positive in the U.K.

Discussion in 'XMRV Testing, Treatment and Transmission' started by joyscobby, Jan 11, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Now that is the big question isn't it?

    First thought is anti-viral drugs, being tested now, one such study already published. AZT showed affective in vitro, none of the other drugs tested (those used with HIV) worked.

    Coffin said the nature of XMRV, that it doesn't replicate often, means drugs meant to hinder replication may not have much of an effect. This also adds to evidence that it isn't just XMRV causing the illness.

    So we don't know what it means as far as treatment yet. I am using antiviral supplements, sleep aid, cortisol and synthroid. I will soon be adding Co Q10. Lots of water, fewer sweets and simple carbs and pacing with rest periods.

    Since even some biological differences are noted in CFS patients, it may be that even when we know the cause and effect, treatments may vary to each patient. Again, there may be a dysfunction that is caused by XMRV (and possibly another factor) but the dysfunction continues even after the initial cause is gone. Basically, the body can't heal. This may explain why we are all so different in symptoms and even biological abnormalities. For example, many have multiple chemical sensitivity. I never did.

    XMRV may not be the whole picture, but it looks like it may be the biggest part of it. So we will need many more studies as to the relationship between XMRV and CFS.

    Tina
  2. Sparklehorse

    Sparklehorse *****

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    Man this damned illness is so complicated! Thanks for your very informative and interesting comments.
  3. Jimk

    Jimk

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    I was going to make a tongue-in-cheek remark that, of course since you are British you must have cognitively induced your positive test (wink, wink, nudge, nudge)... but I think I'll indulge instead in doing some psychological diagnosis of the British XMRV researchers: I would have to say, as a mental health professional myself, that they have been afflicted by an intellectual disorder called "premature capitulation." It happens sometimes to academics who are so anxious to maintain their pet theories that they "can't hold back," as they say, during the act of intellectual intercourse... er, discourse.

    I'm actually about to cross the water to England soon, so perhaps with your news I should be more frightened knowing that I could "catch it" whilst traveling (see, I'm practicing my British). Oh, I forgot, I already probably have "it" anyways.

    More seriously, I offer my support for your vindicating results, if not my congratulations. I have a hard time being happy for anyone with our affliction. I am, however, overjoyed that you have something definitive in terms of eventual treatment to look towards. So many of us have been taking shots in the dark for many years with one treatment or another.
  4. natasa778

    natasa778 Senior Member

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    London UK
    Viral latency can change host gene expression, even in absence of viral proteins being produced
  5. calzy

    calzy Senior Member

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    Naples Florida
    very funny Jimk...
  6. bullybeef

    bullybeef Senior Member

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    Could I ask, if there is anyone based in the UK (and the Republic of Ireland) if they feel up to posting their results on this thread? The more prevalent XMRV is here in the UK, the more pressure can be placed upon the powers that be to introduce specific NHS testing in partnership with the WPI.

    However, I understand this is a very personal, delicate and sensitive issue, so I completely understand if you wish to keep your result to yourself. So please don’t think you have to.

    Cheers,

    BB
  7. Knackered

    Knackered Guest

    I think DysautonomiaXMRV said he'd get his results today or yesterday, not sure whether he'll post them though.
  8. XAND

    XAND

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    madrid
    Dysautonomia did you get your test results already?

    Dysautonomia did you get your test results already? Can somebody confirm the source of that 60% of UK people that got a positive in the american lab? Will WPI disclose this information?

  9. Knackered

    Knackered Guest

    Can someone please link me to the Canadian criteria or list the criteria in bullet point form.

    Edit, just found it, seems I'd fit the Canadian criteria.
  10. coxy

    coxy Senior Member

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    Hi, sorry i don't have the energy to keep going through this whole thread to see if anyone new has tested positive, is there anyway uk patients could have a separate poll for uk & other countrys for that matter that are xmrv positive or negative?
  11. Countrygirl

    Countrygirl Senior Member

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    Without checking,Coxy, I think it is one positive and two negative. I stand to be corrected, but can't trawl through all the posts.

    Any news Dys.XMRV? Here's hoping you will get the result you want - I think...just possibly......your name is a slight clue.....

    B.W.

    C.G.
  12. No, sorry XAND, I do not have my result yet.
    My Doctor is not back at work until tuesday 19th so I will have to wait until then, or longer.
    (On the VIPdx blood form we have to put address of referring doctor and cannot have results sent direct to our homes).

    I will post my result, with proof (photocopy of my form).
    I will be totally honest, and still post evidence, even if it is negative.
    There is no shame in being negative as it's only an initial test that's not even finalised yet.

    All (except the immune) of my symptoms of explained by Dysautonomia, so I'm curious to see
    if XMRV could cause Dysautonomia. Many people with Dysautonomia support people with 'CFS' or ME
    but sensibly keep way out of the label of 'CFS' or ME -because they realise the stigma attached to it.

    All one needs for a diagnosis of Dysautonomia is a TILT test in a Hospital, and preferably other
    autonomic tests also. Out of principle I fight for ME 'CFS' patients by openly stating I have POTS. I could have thrown away the
    label ME or 'CFS' a decade ago but chose to state I have both. (I honestly believe that ME 'CFS' causes
    Dysautonomia, or the other way around) so it would be wrong to lie and pretend I don't have the label
    ME/PVFS as I do.

    Back to XMRV........60% positive from recent London group sent off to USA was what someone said online
    on a forum, not published info sadly. The people who would know would be the company the UK people
    used to send the blood off from. Maybe there was an 'insider' who got tipped off from VIPdx and/or read
    patients results. Who knows.....

    VIPdx could only confirm positive results in UK if a lab worker at the company searches through results, and matches them to addresses in the UK.
    Presumably if this is done anonymously (no names) it doesn't breach confidentiality and is quite harmless. It would be good to know the numbers
    of people testing positive who sent off the blood to the States.

    I would imagine that this is logistically next to impossible, due to work load. :(
    There must be thousands of people send off blood to VIPdx. :)
  13. ANGELONDUTY

    ANGELONDUTY

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    HELLO ALL............NEW HERE.

    HAVE POSTED IN A FEW PLACES,SHORT POSTS...BAD DAY.

    BUT.....I DID WANT TO REPORT IN...... THAT I HAVE TESTED .......POS TO XMRV-DNA.....NED-RHA (?)
    ( & FOR ALL HERE THAT HAVE TESTED NEG.....DON' T LET THAT DISCOURAGE U.........THERE'S REASONS FOR THAT...& U ARE ' STILL SICK ! ")

    I LIVE IN USA IN NORHT CAROILINA. GREW UP IN HOUSTON TX. AGE 58.
    SICK...........YEARS.
    & HAVE BECOME ' A RESEARCH QUEEN ! '........THAT CAME OUT.. BREAT CANCER, 10 YRS AGO !

    PS....PLEASE CK OUT SOME OF THE RESONS BEHIND THESE ILLNESSES..SOME POST HERE REG THAT ! ( THE TRUTH ' MUST PREVAIL ' W/ THIS !)

    2nd.........VERY IMPORTANT.........SUPPORT THE WHITTEMORE PETERSON INSTUTITE ! THEY ARE PRIVATE ! & GETTING OUT THE " REAL STUFF "....! NO GOV.....$ ! !

    SO BLESSING'S TO ALL........& I WILL LOOK FORWARD TO A CHAT ! ..... & SOME FRIENDS ! )
    ANGELONDUTY
  14. V99

    V99 *****

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    ANGELONDUTY

    Agreed, the truth will get out eventually.
  15. AndreaPring

    AndreaPring Guest

    Hi Joyscobby,

    I am starting up a post on my Facebook group created for all the results. I want to show that we are getting these positive results particularly in the UK. Would you have the honour of being the first to sign in and give us some details.
    My blog is: http://www.dancingwiththesandman@blogspot.com and the Facebook group is: http://www.facebook.com/topic.php?topic=13614&uid=210561445782#/group.php?gid=210561445782 - the area for putting your results is under the discussion.

    Thanks so much,
    Andrea
  16. AndreaPring

    AndreaPring Guest

  17. _Kim_

    _Kim_ Guest

  18. Indica

    Indica

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    Ansbach/germany
    This is really useful information.Thanks.[​IMG]
  19. free at last

    free at last Senior Member

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    First congrats on getting the results you wanted Joyscobby, i can only imagine what a emotional ride that must be for you, one of the reasons i joined this forum after living with illness mostly on my own and not discussing with anyone other than my family was seeing the WPI paper. then i bumped into this forum, and a whole new world seemed to open up about trying to understand just what happebed 16 years ago ( and to the present ) The search for truth about this Has consumed me ever since. I was lucky enough to be part of the ashford 50, where apperantly 80 to 90% have tested positive by both the WPI and now the NIH. I await a result for my test, and am very nervourse. because to go through the things i did for that long, and test negative for every test the NHS did was both heartbreaking, and really pretty scary, because after that point, it was a case of your on your own now Jack, and left to deal with symptoms that i thought would eventually kill me. couldnt have been more scared at that point really. just felt very confused, scared and thrown on the trash heap of a CFS /ME diagnosis to deal with it on my own, and see what it eventually did. Now testing negative emotionaly i think i will be straight back on that scrap heap. And i so want to know my tormentor, if its not XMRV than i dont think i will ever know. Will be very confused amd despondent if that happens, im sure many can relate to these feelings.

    Im also interested in the person asking about XMRV symptoms, onset of symptoms and how it progressed. if for no other reason, to determine if it really does fit the picture of my illness.
    Which also brings me to this qoute

    People with Chronic viral infections, deficiencies, sleep disorders, won't have XMRV either, and they'll also test negative - despite being told they have CFS. Only a small percentage of people on this forum will be XMRV+ by the very logic of having an 'unexplained' illness with no specific single Criteria, and no other way to test for it. CFS is an idiotic word and should never have been used. It's a free for all, anyone can join the party - unless using Canadian Criteria.

    This strikes me as very true and is also very worring for the reasons outlined already.
    But im not sure what kind of viral attacks could strike over a long period of time that would leave someone permantly ill. Having a sleep disorder im not sure has a lot to do with it, because that only started after the viral attacks with temps ( lots of them ) eventually leading to a chronic condition, but now with out temps
    But still very ill, even to the point of turning green or pale white with nausea every other week for a very long time. So many symptoms its what i imagined aids to be like. Does this not fit the symptoms of xmrv infection can anyone say ? but if the qoute is correct then what other things behave like this other than a retro virus ? thanks for any input anyone
    Congrats again on getting the result you wanted joyscobby i just want my result so at least i can figure this all out. seems like ive been trying to do that half my life
    ps Anyone know when the ashford 50 results will be published, because thats when we will get our results apparently ?
  20. omerbasket

    omerbasket Senior Member

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    Wow, just a second fellow, you're saying that the NIH now checked these samples too? Because I don't think that we knew that until now (I mean, unless the fact that the samples were checked by the NCI too caused you to say that the NIH checked them, becuase the NCI is part of the NIH). Anyway, who at the NIH? Dr. Alter? Or perhaps it was actually Dr. Lo from the FDA?

    By the way, from what was published until now it seems that WPI and the NCI found more than 60% of the patients to be positive for XMRV, but I don't remember them saying that it was actually 80%-90%. How do you know these figures?

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