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Cooperative Diagnostics home test for XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by dmarie4301, Nov 11, 2009.

  1. dmarie4301

    dmarie4301 Guest

    I wasnt sure where to post this, so I started a new thread. I recieved my blood spot, at home test kit from Cooperative Diagnostics today, in the time frame they said I would on the website (which is: http://www.codiagnostics.com/XMRV/index2.php)

    It was a professional at home kit. I did the finger prick and sent it off overnight FED EX (already paid for by them).

    They say it will take 5-7 days for results, which will be emailed to me and I can print the results out. So, I should know my results in about a week.

    If I am positive for XMRV via this at home kit, perhaps this will prove that other labs have the capability to test for XMRV besides VIPdx. It seems everyone and everybody has trashed Coop, directly, or indirectly, laymen and professionals.

    I am on a waiting list for the VIPdx too..the whole thing $650, regardless of my coop results.

    So, I will cover my bases and compare.

    I will keep you posted!!!

    Donna;)
  2. I got mine

    Hi Donna and friends

    I got my XMRV DNA (by PCR) test today also. Very relieved as I did think it was possibly a scam and I'd simply get a paypal bill and no test! Thankfully I was wrong, and it arrived very well prepared with full instructions and pre-paid 24hr overnight FEDEX shipping box. I'll send it off next week as it's the weekend almost and labs don't want blood later than a thursday. I'll post the results for you once I send it off and hear back.

    I expect it to come back negative as it's a very basic test and there are questions if it's actually able to 'detect' XMRV at all because there are only a few droplets of blood that get put on the card. 4 max. Having said that, if it does come back positive - then I have some more hope to hold onto until in Europe we get access to a more accurate and certified test, hopefully in the next 6-12 months.

    A little bird wrote to me and said they are on it here trying to organise some way to detect XMRV, but it's taking time and thus we should remain patient.
    I cannot do that.

    Currently I'm held hostage in my own home, as I'm refused Diazepam to get outside of the home (I have agorophobia - caused by Dysautonomia/POTS) and I cannot control my CNS. I was using 1/2 tablet to get to the docs, and 1/2 back. Then there is none left though. I've managed not to go out since May 2009 - and it's getting on for December. (I have to keep 2 spare tablets incase I get a convulsion attack). If this was the USA, I could phone a doctor, but I cannot do that - it's state neglect or nothing and the state says ME is a mental illness treated with CBT/GE/Pacing.

    The NHS have refused an ambulance for me to get to my hospital appointments for my 'CBT' to cure me of my POTS :rolleyes: -despite this transport being asked for in writing by a friendly doc over at the Hospital. (This is what socialised medical care does). It's up to the GP to allow funding - and the GP states 'no clinical need' despite a Professor saying there is. Good huh? The money is not central, it's handed out to individual GP practices, and they get insentives for NOT refering. Believe it or not. NOT refering, saves the NHS money - and ME/CFS in the UK is psychosis, therefore it would be waste to give me any care, or indeed - medications.

    Hence the urgent need for preliminary tests on XMRV, that may or may not be a total waste of money - like this one. Desperate times, call for deserate measures.

    Without even a basic (somewhat agricultural test like this), I'm looking at having to wait a year to be able to get out of my front door and I cannot do that. I want to get some fresh air. Sometimes I can open the window in my bedroom but it's very cold outside and by the time I get out of bed, or on the bed - it's dark outside anyway.

    Hence I got this test. Even if it's false hope and wasted money, I'd rather have some hope that being left to rot.

    Currently they (NHS) ignore my Dysautonomia/POTS, Low T-Cell count, Deranged NKC result, Osteoporosis of hips and spine (on no meds), RN-aseL (LMW) countless deficiencies, Hypothyroidism, (US levels, not UK levels) and lowered saturation levels proven on a test I sent them.

    Maybe, just maybe the first 'hints' of XMRV in my blood will allow some access to medical care?

    Who knows. Lets see, I'll keep you updated on the test result. :cool:
    I wish you all good luck, but lets try and remain grounded (very hard), that this specific finger prick test is probably NOT going to come out positive, because
    it's too basic to work correctly.

    Lets see. If so, then it was worth a shot.
  3. I guess at the end of the day the WPI and John Coffin are looking out for patients who may not be aware that the finger prick test is not the be all and end all of medical science.

    Myself included forget that people who are sick - are not necessarily mentally advanced, but mentally backwards. A patient once said to me in hospital, that don't assume sick people are nice or have any interest in their illness.
    (I never thought of that before this moment). I assumed all people with CFS ME are bright, genuine, wholesome perfect people, who consume more research that breakfast cereals -naturally that's not true and lots of people are just as horrible, selfish, rude, stupid and mean as healthy people - and that's just me. :p

    Which probably explains our saviours at the WPI realising this and not wanting people running out and stabbing themselves with needles expecting a miracle by e-mail. Many people would though. (Man is essentially dumb as well as brilliant).

    So the docs at the CFSAS (possibly) publically trashed it in excessive ways, to make sure people wait (en mass) to use a verified certified test - which logically makes sense. And (vitally) validates the seriousness of what the WPI and friends have found. I'm sure it infuriated them a private lab, had designed a fly by night test for an inflated price and offered it just like that - wham.
    Looking at in from their eyes, I too would be rather annoyed! Us patients, and the WPI have corrupt people making sure their patients will not test positive to XMRV, and if this co-operatives test has a 1 in 3 hit ratio - then tonnes of people will be told they don't have it, when they do.

    We understand this, but we don't eat scrap metal.

    But for those of us aware (intellectually and spirutually) this finger prick is just a first step, I see no harm in us parting with what little money we have.

    I don't subscribe to the bizarre opnion of some PWC's that they've waited 20 yrs for a test, so they can wait another year. I'm sure there are people (tragically) all over the world who'll jump into a river tonight, who cannot wait. This is the nature of a public health scandal that is 'CFS' a derogatory term in my opinion akin to the N word. (Oneday, no one with CFS will ever used that word - due to the terrible memories of people treated like a Jew in Nazi germany, or a homosexual in 21st century Africa). CFS was invented by a denial of the patient as a legitimate human being complaining of legitimate suffering. So I detest the word CFS, yet we used it - because others do!

    I so hope will we look back very soon, aghast that when we said that word 'CFS' in a hospital ward, the staff would literally fall silent, then audibly 'tut' or 'sigh' - and treat you badly. Things are/were that bad. These will be our memories. :(

    To defend us lot apparently being idiotic and blowing dollar bills (or pounds stirling) we are very sick and begging for the most basic help. Our mentors (thank god they exist) don't live off state welfare payouts or put swipe cards in electrical boxes, and don't stay up till the sun rises trying to stave off a panic attack because helping you validates or 'medicalises' CFS - or is that just me? :rolleyes:

    I have in writiing in my medical records, orders to 'de-medicalise' me.
    How crazy is that? Also not to talk to me, and to write down what I say.
    Is that even legal outside a fascist state? Apparently so. Even without consent. This is our life, not the life of fortunate people who get anti-viral drugs and tell us all they feel so much better. Great for them, but what about us? If I felt so much better, I'd go rescue other people - not tell the sick people I'm so much better!!!!

    I think they have no idea that's it's perfectly legal in socialised medical systems to deny people basic medical care for ME CFS on the basis you're a hated patient. Simple as. After all, no matter how on our side the WPI are - these people get what they want medically as they have power (they're medics), or they're wealthy or they can stand upright, travel, and physically go into a clinic.

    I've seen posts here about people getting on trains to go and see the best docs in the world. In their situation - I would too, who wouldn't? For 99.9% of us it's a fantasy, and ofcourse (ironically) the healthiest patients (sans ariving in an ambulance with paramedic) get to see these specialists.

    The people half dead who can't speak, eat, or even open their bladder voluntarily are certainly not going on trains and see nothing but hell. Most of these terriblly sick PWC with extreme disease won't make it before XMRV is validated as causing ME CFS. It won't be of course. (ME CFS means nothing to those who stand on our heads and pull our ears to the ceiling).

    XAND label - is the escape. The day you can hold you head up (or eyes open) and feel safe, amidst a war zone atmosphere of incoming shells.

    I think about these people, people way way sicker than me who have to use sign language to communicate and put tubes up the genitals and noses.
    Imagine having a tube filling a bag of human waste, and being told you suffer from CFS - which is your fault and you can be cured in 3 days, or by saying the word, No. On that topic I got a magazine today on ME CFS, from my local support group. It's running an advert saying you can cure ME CFS in 3 days, and another one for the GUPTA process that says they can be more honest, now they don't think the have ME CFS. WTF?! I swore very badly indeed.


    In this state of affairs, or even not as sick - the co-operative tests would be diamonds glistening on a pristine lilly leaf, even if when grabbed, the apparent jewel is a plastic replica.

    Myself and others, are denied home oxygen or other basic medications, electric mattress lifters, pain medication, respriatory support, bath/shower aids - and, ironically, access to a counsellor to tell people how you feel).

    People outside social medical systems who are fortunate, just pay the $$$ and get the service. Addmitedly you need dollars to be able to get it in the first place!!!!, and most PWC's don't have money. But there are people, I read threads all over the place about people injecting themselves with anti-virals. For most of us, that's medical porn. So we put faith in throwing a paper plane into a hurricane and hoping it lands safely, for $400.

    Highly unlikely, but not impossible. Impossible becomes expected when your life is impossible and finished.

    Still, I think we rebels can watch our own backs for now and be sensible with any possible result we get, and remain calm and not end up at the GP's getting even more hypertensive than usual.
  4. dmarie4301

    dmarie4301 Guest

    Blood spot tests

    Thanks WilDaisy for your response about testing your thyroid that way. I know they can test things through dry blood...amazing, plus I just read somewhere that DNA doesnt disinegrate (thus the cold case files being reopened with DNA evidence in regard to murders)..

    Sorry Cold Tears, tho we've emailed personally, I couldnt read through all you wrote there...too tired right now....in case these questions werent answered:

    Cooperative is testing for LIVE XMRV only. Thus a follow up test with VIPdx would be good if our tests come back negative, or even if it's positive, I'd like reproduction.

    Also, did Cold Tears say he is in the UK????? And VIPdx, from what Ive heard wont ship out of the US. So, this could be an alternative for our fellow ME sufferers in England.
  5. gracenote

    gracenote All shall be well . . .

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    To Cold Taste of Tears

    Cold Taste of Tears,

    Your story continues to move me every time you post. I am reminded of when I was struggling to make sense of an emotionally abusive marriage and was told by the church leaders that I needed to put my trust in my husband to lead me, that I needed to be delivered of demons, that I was still sick because I hadn't trusted God to heal me. Friends and fellow parishiners, even my sister, were told not to help me because I was being "unsubmissive." The real tragedy was that I almost believed them. Because they thought all my counseling needs should be provided by them, I was denied any outside help. I had three young children to look after, I was very sick, I couldn't work, and there was no one, except finally my sister, who understood that something was very wrong. But even she turned her back when I separated and filed for divorce.

    I know you are having a really difficult time, and you have been put through hell. I hope you can take heart that there are many of us who understand the depths of despair that you're experiencing. That even in the USA with more access to doctors and treatments, I have friends who cannot afford it and cannot travel even if they could. Some have no family or friends to turn to at all.

    I am fortunate that I eventually came to see that the problems in my marriage were not due to some failing of mine, were not something that I could ever fix, and that getting out was the only way to save my life and stop the craziness. I almost feel as relieved with the discovery that XMRV may cause my CFS and all its mystifying symptoms as I did when I could finally name the pain in my marriage as being caused by abuse. There are still many people in my life who don't understand what went on in my home and think I should have made my marriage work. There are also many who don't understand that I am suffering from a real illness. But I do. I do. And I have now found others who do in my circle of mostly ill friends, among just a few family members, and here on this forum.

    Hang in there, Cold Taste of Tears. We're all pulling for you. And I get it why a test that is being offered now, that is accessible to you, might provide some much needed support. Can I hope that you are positive for a retrovirus that may never leave your body? I think I can, and I think I will. Please let us know your results.
  6. kurt

    kurt Senior Member

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    Cooperative's test

    The Cooperative Diagnostic test is valid, I know the company. If they say you are positive, you were positive, if they say you are negative, you were negative. They only need a few drops of blood because of the sensitivity of their test, which is many times beyond a regular PCR. Their background is very impressive, including work of the founder for Dept of Homeland Security on anthrax rapid testing. They are heavily involved in HIV testing and say XMRV is far simpler to test. They have a low-cost HIV test for use in Africa, but it is processed in Central America (low-cost testing is not possible in the US).

    If anyone has serious questions they can email me, as I said, I know someone at that company and have access.
  7. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    I'm sure Coffin had the best of intentions in saying what he said about testing at CFSAC. He has a great rep and seems like a real good guy (so does Leonard Jason). However, you aint gotta do what he says.

    Personally I'm not going to get the test now; I'd rather just wait and see if XMRV will get backed up as the cause, or at least remain the leading candidate with no serious marks against its candidacy.
  8. kurt

    kurt Senior Member

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    Cooperative's HIV test

    The low-cost HIV test is for Africa ONLY, and is processed at a Cooperative Diagnostic lab in Central America. Also, the end user will pay more than $10 in Africa, as it will be sold by organizations and/or governments, that is just the Cooperative part of the expense for the test. The wholesale cost, at least as I understand what they told me. This should be a break-through test for AIDS in Africa, and is partly a charitable activity. This type of low-cost testing is not possible in the US or CA or the UK. To run a clinical test they must use a CLIA lab here, which adds a huge expense to all testing.
  9. Advocate

    Advocate Senior Member

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    Thanks for pointing out the expense related to becoming a CLIA lab. I had assumed that the reason so many "alternative" tests are available to people in every state except New York was that regulators in New York were opposed to any alternative tests or tests not run by the huge testing corporations. But our dentist said he thinks the reason is that small companies--the ones that are likely to do alternative tests--have a hard time paying the high fees required to operate in New York.
  10. Advocate

    Advocate Senior Member

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    Yes, it's great that we have someone who is willing and able to do this.

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