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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

XMRV testing in the UK: statement from The ME Association

Discussion in 'XMRV Testing, Treatment and Transmission' started by fred, Apr 12, 2010.

  1. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    http://www.meassociation.org.uk/ind...rv-testing-in-the-uk&catid=30:news&Itemid=161

    Monday, 12 April 2010 15:57

    The ME Association is receiving questions from people with ME/CFS and from health professionals about various aspects of XMRV blood testing here in the UK. We have therefore summarised all the relevant information that is available at present.

    General Advice on XMRV blood testing:

    Our general advice regarding XMRV blood testing remains as follows:

    Until it has been firmly established that there is a definite link between XMRV and ME/CFS, and an accurate method of testing for the virus in blood samples has been agreed by international retrovirologists (virologists who specialise in this type of infection), there is no point in people with ME/CFS spending a large sum of money on private laboratory testing for XMRV.

    This is because:

    1 With only one research study so far supporting a link to ME/CFS, and three validation studies not finding any evidence of XMRV in people from Europe with ME/CFS, the link between XMRV and ME/CFS remains uncertain.

    2 There is no evidence at present to show that XMRV is a disease causing virus in relation to ME/CFS, or that it causes ME/CFS.

    3 Being XMRV +ve does not confirm that someone has ME/CFS - the presence of XMRV cannot therefore, in our present state of knowledge, be used as a diagnostic marker for ME/CFS.

    4 Being XMRV+ve is not, at present, an indication for treatment with antiviral medication, or any other speculative prescription-only medication. Antiviral drugs such as AZT can have serious side-effects (including development of myopathy and neuropathy - muscle and nerve damage) and given the fact that the NICE guideline on ME/CFS states that antiviral medication should not be prescribed in ME/CFS, doctors in the UK are unlikely to be willing to prescribe antiviral medication in the current state of uncertainty.

    5 The current methods for testing for XMRV may be producing either false positive results or false negative results. The accuracy of commercial testing has not been properly validated.

    6 Individual counselling and medical advice should be available to people who take an XMRV test - in exactly the same way that it is given to people before and after taking an HIV test. In the case of commercial XMRV testing, this sort of advice does not appear to be available in the private sector. From the ethical point of view, the availability of informed medical input also apply to research studies if the XMRV result is going to be given to the people involved.

    There are further XMRV research studies in progress in Australia, Europe and the USA, and the results will be gradually appearing over the coming months. Hopefully, a clearer picture will have emerged by the end of the year as to whether XMRV is linked to ME/CFS. If this is the case then further research will then need to examine whether the virus is actually involved in causing symptoms in ME/CFS (it may just be a harmless passenger) and whether appropriate antiviral medication needs to be assessed in clinical trials.

    XMRV testing: NHS and Private

    Testing for XMRV is not available on the NHS and we are not aware of any private UK pathology labs who are testing for this virus, or have the expertise to do so. So the only way to get an XMRV test is to send a blood sample to an overseas laboratory. Further information on the availability of overseas XMRV testing can be found here: http://www.xmrvtesting.co.uk/

    One of the commercial laboratories in the US that has been offering XMRV blood tests has now withdrawn this facility until the scientific controversy surrounding XMRV and ME/CFS has been resolved >>http://www.codiagnostics.com/XMRV/diseases.php

    Extract from the codiagnostics statement on XMRV:

    While XMRV is an infectious retrovirus and will certainly impact the medical community, people with CFS may be better served by waiting for further studies connecting XMRV to CFS prior to investing in a diagnostic. Those who choose to be tested anyway should understand that any testing at this point is research only in aiding to establish the actual prevalence of the virus in the CFS community. Until the scientific controversy surrounding XMRV is resolved, Cooperative Diagnostics has removed its test from the market and will participate in research only.

    What should people in the UK do if a blood test shows that they are XMRV +ve?

    If you have been informed that as a result of a blood test you are XMRV +ve, this result should be discussed with your GP and/or ME/CFS specialist. The ME Association cannot provide individual advice on lifestyle or drug management in this situation. This has to be a decision for you and your medical adviser.

    Retesting XMRV status in the UK

    The MEA believes that a small but important part of further research into a possible link between XMRV and ME/CFS is to retest anyone who has sent blood to the US. This process would involve retesting at one of the retroviriology laboratories here in the UK that has been unable to find any evidence of XMRV in the blood samples they have analysed so far. We know that the UK research groups would be willing to do this retesting but this research can only move forward if people are willing to volunteer. The MEA Ramsay Research Fund is willing to assist with the funding of this research.

    We have also indicated that all the research groups that have published positive and negative findings on XMRV so far should now test a new cohort of mutually agreed ME/CFS patients. We will then know whether there is agreement or disagreement when blood samples from the same cohort of people with ME/CFS are simultaneously tested. The MEA Ramsay Research Fund would again be willing to help fund a well designed study.

    Blood donation and XMRV status

    The ME Association has written to Sir Liam Donaldson, the Chief Medical Officer, to ask him to reconsider the current advice on blood donation and ME/CFS so that people with a past history of ME/CFS are also excluded from donating blood. The position, at present, remains unchanged in that people with ME/CFS should not donate blood until they have fully recovered. This official advice goes back some time and is not related to XMRV.

    Summary of current advice regarding blood donation can be found here:
    Most recent statement on the blood donation situation in Canada:

    Possible consequences of being XMRV +ve

    We have been asked whether insurance companies and others will be placing restrictions on people who are XMRV +ve in the way that this sort of discrimination can take place with people who are HIV+ve. At present, we are not aware of any insurance companies that have introduced any such restrictions, or are intending to do so in the near future. But this is clearly something people will need to think about if they are considering having an XMRV blood test. Remember the relevant question may be whether you have been tested for HIV (or XMRV) and not whether the result is in your medical notes.

    It should also be noted that the exact mode of transmission of this retrovirus remains uncertain. If XMRV does turn out to be a disease causing virus similar to HIV, and can be transmitted in a similar way through body fluids, then people who turn out to be XMRV+ will obviously have to take the same precautions in relation to lifestyle, sexual relations etc that apply to HIV. They will also have to cope with some of the restrictions that may occur as a result.

    MEA website poll on XMRV

    The April MEA website poll is assessing public opinion on XMRV.

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association
     
  2. Otis

    Otis SeƱor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Some decent points made, I look forward to what my friends from the UK think so I'll just throw out just one thought.

    One counterpoint would be that getting tested can help establish a link, especially given the 'environment' in the UK.

    Otis
     
  3. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    I would find sitting on a fence that long quite uncomfortable.
     
  4. alphahusky

    alphahusky

    Messages:
    71
    Likes:
    0
  5. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    does this mean if your in the current UK XMRV study, you will need to be re-tested in the UK?
     
  6. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Anyone any comment on the rationale of this statement by Charles Sheppard given that this sample swapping/agreed cohort study is aleady underway in the US with six labs participating. Is Sheppard saying, well we still need to do the same here to validate what the US is doing or that if we do it in UK it will further support the case for XMRV in CFS.

    Personally, whilst I agree with some of the points he made I found the general tone to be negative.
     
  7. vdt33

    vdt33

    Messages:
    83
    Likes:
    7
    Texas
    This article is insensitive to how sick many people are and how much people are suffering. Dr. Shepherd should know that the Hell of ME/CFS is worse than the problems of those being treated for a retrovirus.

    vdt
     
  8. maryb

    maryb iherb code TAK122

    Messages:
    2,882
    Likes:
    2,015
    UK
     
  9. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Nice posts VDT and MaryB. Glad it is not just me thinking 'Geez, can't he at least appear a little bit upbeat about XMRV?'

    Obviously not.

    Picture this; Informing your GP you are XMRV +.

    'Well Adam that's very interesting news, you are XMRV positive are you and your are sure about that are you?'

    'Positive I'm positive doctor. It says so on this letter here'.

    Adam passes letter to doctor to read, whilst thinking; I won't bother explaining the ins and outs of false positives, the nuisances of PCR testing methods etc. Can't expect my GP to be clued up on that sort of research.

    Doctor returns letter to Adam. 'Just refresh my memory will you Adam?'

    'Of course, what do you want to know?'

    'What exactly is CFS?'

    Forget it Doc. OK. Just forget it!
     
  10. Kati

    Kati Patient in training

    Messages:
    2,062
    Likes:
    1,597
    Retesting in the UK would be opening a can of worms. 2 UK studies have shown they can't find XMRV. Scientists in UK will have to prove they know how to find
    XMRV before I would trust them with my blood in my opinion. The investigators would have to admit where they have faulted and write to the journal where they have published. Otherwise it would be like allowing Cooperative Diagnosis to do a replication study.
     
  11. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Until those UK retrovirology labs have had their OWN methodologies validated, there is no point sending patient blood to them, as Kati said. The WPI has offered ICL a chance to at least begin to do that, but more work would be necessary.

    Strange that Shepherd says VIPdx's commercial test "has not been validated" because: (1) it has been, to a significant degree; it is basically the same methodology used in the WPI study which was validated by the NCI and the Cleveland Clinic.. granted, that was small-scale validation within a study, but it did involve other laboratories, and (2) none of the methodologies used by those UK labs have been validated at ALL.
     
  12. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    Nice irony, Adam. LOL
    Steve
     
  13. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    Precisely Doc (obviously not Adam's doc)
     
  14. Cookie Monster

    Cookie Monster

    Messages:
    76
    Likes:
    0
    I totally agree with the point most people have made about the MEA's stance being way too negative. What i would also say, in Charles Shepherd's defence, is that alot of that content was written months ago and has not been fully updated to take into account more recent developments.

    Charles did a bbc midlands radio interview on 31st march and it was far more upbeat and encouraging about xmrv. He mentioned some of the recent drug studies that have been shown to be effective against xmrv infection and was overall far more positive than this write up suggests. I dont think he gets paid to advise the MEA either so probably hasnt been pushed too hard to give this entire piece a much needed revision.
     
  15. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    He himself emailed it on 12th April.
     
  16. Esther12

    Esther12 Senior Member

    Messages:
    5,296
    Likes:
    5,606
    At this point, I think it makes sense for advocacy groups to stay cautious about XMRV. It will leave them in a stronger position if XMRV does not work out, and if it does, that will be such a significant change for all of us that their earlier caution will be quite by the by.

    If we really are close to finding the almost all CFS patients are suffering from a retrovirus rarely found in the general population, this is going to be such a breakthrough that what is meant by 'CFS advocacy' will be changed overnight. At the moment though, I'm still concerned about what will happen if XMRV doesn't work out, and think CFS/ME groups need to be preparing for this too.
     
  17. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    I agree, Esther.

    We can't and shouldn't speculate on stuff we don't know. We should just reflect that research momentum is gathering, and this is all good. We should see ourselves in a win-win position not "lose" should xmrv not hold up. Even if it does, it doesn't look like it will be a straightforward model, so will take time to understand transmission, asymtomatics, progression, treatment etc.

    There is also the possibility of identification of ME subsets (eg. with and without xmrv), as has been noted elsewhere before, and this has obvious implications for advocacy too.
     
  18. JAS

    JAS

    Messages:
    70
    Likes:
    0
    UK
    This is what disturbs me with their thinking:

    "The MEA believes that a small but important part of further research into a possible link between XMRV and ME/CFS is to retest anyone who has sent blood to the US. This process would involve retesting at one of the retroviriology laboratories here in the UK that has been unable to find any evidence of XMRV in the blood samples they have analysed so far. We know that the UK research groups would be willing to do this retesting but this research can only move forward if people are willing to volunteer. The MEA Ramsay Research Fund is willing to assist with the funding of this research."

    Why does he want to put XMRV +ve through testing in this proposed UK Ramsey trial when the UK scientist presumeably he will be using have been "unable to find any evidence of XMRV in blood samples they have analysed so far" bearing in mind Annette Whittemore's letter. Where is the integrity? If the UK Scientists really do want to find the truth of XMRV surely it is far more important to work WITH the WPI as opposed to against them to see why their testing is not producing the same results....not just carry on testing positive bloods..he can get those samples from the WPI but he just has to ask for them which they would do if they were being rational. Why would anyone who is XMRV +ve put themselves in the position of being 'used' by the UK scientists. I firmly believe that the best way that XMRV +ve people in the UK can help to get to the truth of XMRV and help other sufferers with ME/CFS in the UK is NOT to donate blood towards this, if the UK scientists do not have UK positive blood they cannot do the science and therefore will not be part of the whole XMRV story. If they do seriously want to be part of the XMRV story then they will have to work with the WPI....and they would do this if they were seriously trying to ascertain why their testing isn't working.
     
  19. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    This is my concern also.
     
  20. Cookie Monster

    Cookie Monster

    Messages:
    76
    Likes:
    0
    I see your point Fred, but what i was hinting towards, and admittedly i may not have been all that clear about, is that there is probably a considerable difference between what Charles Shepherd currently thinks in terms of XMRV and what the MEA will allow him to say in terms of the content of his statements that are made on their behalf.
    I expect he very much has to have has his nhs hat on there, and because of that he will probably be restricted to using just the research papers that have been published (most of which have been negative).

    Have you have seen the previous statements on XMRV from the MEA? This will be about the fifth one i think, and a lot of the old points made months ago seem to always get repeated. So i kind of get a different perpective than someone who is maybe reading his statement for the first time, possibly thinking everything that he is saying is fresh and new.
     

See more popular forum discussions.

Share This Page