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New UK XMRV/Retrovirolgy Website - MEA announces

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by pictureofhealth, Dec 26, 2010.

  1. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    The ME Association has announced the launch of a new UK XMRV/Retrovirology website.

    http://www.meassociation.org.uk/?p=3653

    One wonders who is the brainchild (denizens of King's College perchance?) and whether it might be a rather unsubtle attempt to 'participate' in and influence UK patient discussions about XMRV, discover initiatives such as protests/letter writing campaigns etc in advance, and also to find out identities of UK XMRV study participants etc (one has to give full details to register on a website).

    Given that this appears to be a 'centrally' planned initiative and given the recent onslaught of some UK virologists/members of the UK medical community/the medical press and almost the entire UK lay press toward XMRV research and UK ME patients, I would advise huge caution about engaging with or using this site.
    .............................

    NB. My update/Edit 29/12/10 - Please see post #23 from Tony Britton at the MEA, with more information about this new UK site. I apologise if any of my comments above and below have been inappropriate or unfounded in any way, and wish the creators of this new UK XMRV forum all the best with their new venture.
  2. justy

    justy Senior Member

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    have you investigaqted the site at all? it looks o.k to me. Some more info would be good before deciding wether it is a useful site for M.E sufferers or not.
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    You could be totally right Justy - just that with all the contamination papers and UK press coverage denouncing the link between ME and XMRV published also on the MEA website, (who have advised caution all the way down the line on the link between XMRV and ME) - it seems odd, to me, that they would also suddenly announce an XMRV and ME/CFS website. Odd odd odd.
  4. eric_s

    eric_s Senior Member

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    And the name is "HGRV" which is a name that the group that gathered at the WPI before the opening of the new building introduced. The more cautious scientists tend to use the name XMRV or MLV-related sequences. Not HGRV or HMRV.
    It will be interesting to watch.

    If you register you can see "the team". Which will of course not necessarily tell you everything.

    This is what a quick search produces:

    http://whoisx.co.uk/hgrv.org.uk

    Probably doesn't reveal a lot.
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    There are over 100 local and regional ME and CFS support groups in the UK and increasing numbers of forums, sites and Facebook groups. The MEA's Tony Britton is sent notices from UK support group leaders, links for new sites and forums etc for posting on the MEA's News pages.

    Nothing "odd, odd, odd" about the MEA posting a notice about a new forum.

    There's enough conspiracy knocking around already without going looking for it.
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    The location of the forum administrator/group leader is given as London and they are associated with this forum:

    http://www.blebinfo.co.uk

    that domain is also registered in the same name as the domain registrant of the new forum.

    It's always worth doing a bit of poking around.

    If you email the forum/group leader and ask nicely, they might give you some background and reassurance that this new forum has not been set up by anyone associated with KCL :eek:)

    The name of the forum on the site, itself, and on the Welcome and activation email is:

    HGRV/XMRV
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    No "full details" are required to register for this forum - all that was required of me, just now, was a username, a password and an email address for an auto activation email.

    Anyone seeking to "discover initiatives" can read or sign up to PR or to the alternative forum to PR that was opened earlier this year or to any of the dozens of Facebook sites where letter campaigns and protests are openly discussed.

    But hang on...this guy is London and KCL is London...OMG...it must be Wess....

    ...don't tell 'em your name, Pike! <irony>

    I'll lurk on this new forum for a week or two and should I spot anyone wearing a beige raincoat and hanging around looking a bit shifty I'll be sure to report back. <joke>

    [​IMG]
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Its my (delayed) reaction to last week's 'contamination' debacle in the press and medical journals I guess.

    Sometimes when I post a message it seems totally reasonable at the time and then when I read it, some of the message may appear to be unfounded, or at best defensive!

    I really intended not to get caught up in the negativity of all of last week's publications and total UK bandwagon press coverage and the lack of encouraging comment and hope - but I guess, somehow in the back of my mind, it got to me in the end and made me angry. Why? - because in the UK we are a bunch of jingoist, self important egomaniacs.

    The UK medical mindset seems to me to be deadening to any kind of pioneering scientific spirit. Instead of being thrilled at the prospect of the WPI's new discovery and the NIH findings of Lo/Alter, they simply tried to kill it off in what can probably best be described as a premeditated, coordinated, really unpleasant smear campaign - probably because the UK scientists didn't make the discovery themselves, but just wanted to make a loud splash anyway.

    Probably this new XMRV site is a great site, set up by people just like us who are really interested in the XMRV/ME/CFS connection. However, there seems to be a big deal about it being a 'UK' site. Why? I am not sure what the need is to set up a 'UK' site? Will it be adding something new, when PR forums here are already doing such great job?

    For eg, who are the UK Retrovirology Experts who will be contributing? What on earth could they possibly have to offer? Are there any who are persuaded about the ME/CFS/XMRV link? Almost every single one who speaks seems to think it is 'contamination' - and if anyone of them thinks differently, they are keeping pretty quiet about it. Perhaps they will speak out on this new site?

    In actual fact, what has the UK contributed to this important research of any consequence or benefit whatsoever so far? All the experts are in the USA.
    If there was some UK biomedical research then perhaps we could have something to write about/discuss or some reason to set up a new site.

    Until that happens, until the UK actually contribute something relevant to this important discovery and move the field forwards, I am sticking with PR forums and WPI for any discussion on XMRV.
  9. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi Suzy, yeah the guy in the raincoat does look a bit shifty! Where was this taken? Kings College Moscow?
  10. Enid

    Enid Senior Member

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    Definately huge caution especially since the MEA refer to encephalopothies not encephelomyaltis (as Melvin Ramsey Royal Free) Perhaps they do not know the real thing.
  11. garcia

    garcia Aristocrat Extraordinaire

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    A new forum to discuss XMRV? What is wrong with Phoenix Rising? :D:D;)
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Enid.

    There is no evidence whatsoever that this new forum has anything to do with the ME Association. I have already said that Tony Britton is sent links for new forums and Facebook sites for posting on the MEA's rolling News pages.

    Would you like me to ask Tony to confirm that the forum has nothing to do with the MEA, per se, and that they have been asked to flag up the launch of the forum?

    The link might just at easily have been sent for posting on Co-Cure or on Action for M.E.'s News site or any of the existing UK based websites, message boards, forums and Facebook sites or on my own site.

    I really don't see why some of you are so twitchy about this or why you think it has anything to do with the ME Association.

    Why should the UK not have a forum for discussing XMRV or any other issue for that matter? Either it will get used or it won't.

    Suzy
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    pictureofhealth wrote:


    Firstly, I have no interest in this new forum and do not know the forum owner personally. I have a membership but am not an admin nor a moderator (the site is appealing for moderators).

    I agree that it would have been helpful if Tony Britton had requested a little more information about the forum owner before publishing the link and perhaps, for the sake of clarity, the MEA might have added something like - This newly launched forum has no connection with the ME Association.

    But as I have already said, and as I have repeated to Enid, it is not unusual for the MEA to be sent URLs for new websites, forums or Facebook sites which may be of interest to their members and readers for flagging up via their rolling news pages with which they have no connection, themselves.

    If some of you are concerned about who has set up this UK based forum, why not ask the forum owner about his background and any affiliations?

    If you are concerned that the forum does not set this out on the site, I would mention that if you go to the US based forum that opened as an alternative to Phoenix Rising

    http://www.mecfsforums.com/

    with a view to signing up, if you want to access most of the forums and post messages you will also be requested to register with a username and password and you will need to provide an email address. You may or may not receive a welcome email. I did not receive one when I joined.

    Whether the welcome email for http://www.mecfsforums.com/ currently sets out who owns that forum and what their background is and a contact email address, I cannot say. But one of the forum admins works, in any case, under a username and not under his own name - so there is no transparency there. I don't recall seeing people getting twitchy, here, about that.

    If the site owner of this new HGRV/XMRV forum is not prepared to be transparent about their background, then one has the option of not remaining a user of the forum.

    If one does not like the way the way the forum operates one is not obliged to remain a user of the forum.

    One is not obliged to give any personal information over and above what one is comfortable with.

    Forums come and go. There were UK based and US based forums and Yahoo Groups long before Phoenix Rising was created and there will be other forums set up in the UK and elsewhere - some will flourish, some won't.

    Phoenix Rising does not have a monopoly on the discussion of XMRV.


    I can think of a number of reasons why some patients and carers might be interested in another forum.

    They might prefer to use forums that don't run advertising.

    They may find the very lengthy and fast moving threads on PR difficult to keep up with, especially if they are not online all that frequently.

    They might feel more comfortable discussing the specific issues we face in the UK regarding availability of testing, the education of GPs, consultants and allied health professionals, the blood donor situation and the issue of UK funding of research into XMRV testing and treatments easier to discuss amongst those who might better understand the UK NHS system of health care and are familiar with the politics surrounding ME and CFS within the UK and from the UK perspective.

    Some people find large forums with mutiple threads and thousands of members daunting to find their way around.

    Some people prefer to dip in and out of a number of forums.

    There is already a forum for the UK blood draw people associated with the portal that was created by patients to act as a channel of communication between study participants and the WPI. There are Facebook sites for discussion of XMRV - there is probably a Yahoo Group, too.


    I don't see any forum based in any country as any kind of "threat" or encroachment on the discussion of XMRV or the disemmination of XMRV information on Phoenix Rising.

    If there is a niche for a new UK centric XMRV forum and if it is well managed, it will be used, if not - it won't.

    Suzy
  14. duckndive

    duckndive

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    I haven't posted previously. I don't have enough knowledge to contribute but I have read every day since I joined.

    What's wrong with Phoenix Rising is that xenophobic Brit-bashing and abuse is acceptable. I don't want to read terms like "British bastards" which are thrown around regularly by particular posters. If your best argument is abuse, then you don't have an argument. I'm not surprised that some people post in that way. I am suprised that it is tolerated and that despite very active moderation on this forum compared to some, the offensive posts remain. It doesn't matter what a few doctors do or don't do in this country, it doesn't justify that kind of behaviour.

    This will be my first and last post here. I'm sick enough without having to read this stuff.

    So I'm glad there's a new UK forum.
  15. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Let's be quite clear about this. I am the one doing the Brit bashing on this thread, and I am British.

    The 'British' have contributed nothing to the XMRV debate other than WPI bashing. 'They' have failed to find the cause of ME for the past 50 years, let alone the last 12 months. 'They' have told us that XMRV is contamination as if 'they' were some kind of authority on the matter. In the meantime, having told us what our illness isn't, 'they' haven't had the wit or the foresite to dip into 'their' collective pockets, do some collective hard research, instead of academic pointscoring and wipe the silly grins off their faces long enough to find out what our illness actually is. Meanwhile 'they' have chaparalled us into 'mental' clinics (which is where all the funding is) in an attempt to persuade us that we can exercise our way out of encephalitis.

    I do not want to read one more single UK paper about what ME isn't, or any claim from a single other self appointed UK mental expert, in any UK medical journal, UK academic journal, UK health site (esp government ones), or patient website, especially not on the MEA website, which claims to represent UK ME patient interests. I do not want to visit another UK doctor who looks at me sideways when I have an ME diagnosis. The only way patients' interests can be represented in the UK is by setting up nationwide biomedical research projects with goverment funding in addition to private funding, and closing down the 'mental' clinics and sending their self appointed 'experts' to man check out desks at Sainsbury's supermarkets, where their general skills will be of far more use to the general public, I can assure you.

    The announcement of the XMRV UK website came hot after a week of:
    - a massive coordinated 'XMRV is contamination' campaign/report on the part of UK virologists/scientists/doctors/establishment organisations/the medical press and almost the entire UK lay press - with almost NO comments from Judy Mikovits or Harvey Alter/ Dr Lo to counterbalance the article (they had to go on Nevada Newsmakers to do so).
    - the week before Xmas
    - the MEA reported it (as if it was some kind of fact because UK retrovirologists say it is) on their website - but initially without any balanced comments from the WPI or Dr Alter for eg,
    - the MEA also published Prof Pinching's 'its all contamination' article too (an advisor to another UK so called 'patient representative' charity) along the same lines - who thinks Graded Excercise helps ME patients - hardly an article 'of interest to patients',
    - in addition to the news the week before that Myra McClure was asking patients who had tested positive from the WPI's UK group for their blood samples for her new research project (not even when hell freezes over my love) -

    Longer term concerns include:
    - any CBT/GET enforced on any patient who opposes it,
    - the recent news that the CBT/GET brigade in the UK have set up (without patient consultation) a group called BACME which claims to be the UK medical patient representative charity on ME - another eg of doctors telling patients what's good for them without actually doing what patients need or want,
    - a trial of the LIghting process for Children being cleared by an ethics committee, despite it being contrary to UK guidelines for medical research and inspite of patient opposition to the trial,
    - NICE (goverment) guidlines for ME inthe UK being unfit for purpose (they suggest CBT/GET are the only 'treatements' GP's can use 'on' patients), - but still being enforced despite patient opposition to them,
    - misleading articles on the Dept of Health website and in physiotherapy magazines for eg, about ME etc
    - serious private ME biomedical research scientists are not getting support or help or recognition from the mainstream medical or government bodies, leading to the loss of Dr Kerr who was engaged in real ME research, earlier this year.

    - and quite frankly, mistaken though I may be, my first thought when I saw the news of the UK XMRV website, was that it was another set up. Because that my friends is distinctly how I am feeling right now - 'set up'.

    I think its true to say that I now feel I have absolutely lost all trust in the UK medical profession and patient representatives who are supposed to be representing UK ME patient interests, I will from now on assume that anything that comes out of the UK is designed to avoid serious medical research (unless Dr Bishop actually finds XMRV) and I am placing my hopes entirely on the continent - XMRV or otherwise - because nothing, NOTHING helpful to patients, even organisations that want to help, can thrive in the political, career building, intellectual mas.... ing climate that passes for medicine and ME patient care in the UK.
  16. eric_s

    eric_s Senior Member

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    There are many Brits on this forum and as far as i'm aware none of them has ever been attacked because he or she is British. I think we all get along very well here, no matter where someone is from. If somebody has used the term "... bastards" that was because of the actions of some people and not because of their nationality.
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    picture of health wrote:

    This is not recent news.

    I really don't know what you mean by this:

    BACME is not a charity organisation, nor is it a patient representation organisation - it has taken over some of the functions of the CFS/ME Clinical & Research Network (CCRNC).


    I feel rather sorry for Ross Edwards who has gone to a lot of trouble to set up a new UK based forum for the discussion on XMRV.

    The portal text reads:

    "Our goal at HGRV.org.uk is to provide a forum for research and discussion on retrovirus associated disease. Our focus is on the emerging science involved in gammaretrovirus research especially XMRV and MLVs.

    The following related retrovirus types may also be covered :
    - Alpharetrovirus, Betaretrovirus, Deltaretrovirus, Lentivirus, Spumavirus, Hepadnaviruses

    Along with possible associated diseases :
    - Prostate Cancer, ME/CFS, ALS, HIV, Breast Cancer, Hepatitis C, Autism, RTI"


    ------------
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Well, here's two issues that I am very uncomfortable with:

    The promotion of a Lightning Process practitioner by the forum owner (Berit and Dr Frivold).

    The forum owner's stated interest in Abraham-Hicks.
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Suzy, (& to everyone who has responded here) - thank you for your replies. You are probably right and if I have caused any offence to Ross, I am deeply sorry.

    I am very interested in the science behind this illness and like most patients who have been ill for over a decade and out of work, I simply want to feel well again in order to re engage with life and, bizarrely enough, get back to work! I'd like to be well enough to walk to the shops and visit my partner.

    In general I have found the response of certain members of the UK medical profession and research organisations toward this illness, very surprising, very uncaring and very unhelpful indeed - at worst higly disruptive and at best very uncurious. I come from a medical family and used to be a staff nurse in a major London teaching hospital. I thought UK medical care was among the best in the world. I am sadly disappointed.

    I am sorry that the news of Ross's inspiring endeavour happened to be posted almost immediately after one of the saddest week's in UK medical history as far as I am concerned, because it most definitely clouded my perception as to the site's origination and intention and I am sorry that my suspicions 'got the better' of me.

    However, I certainly don't want people visiting PR forums for the first time and getting the impression that it is a 'Brit bashing' site in general as this is not the case - that would be a huge disservice to Cort and to the many many generous, inspiring and highly intelligent people who visit and post here.

    I wish Ross all the best with his new UK site and hope he will forgive me for my misgivings. If people would like, we could delete this thread and start another one about the UK site, with a more positive outlook.
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Well, I'm not overly keen, myself, on seeing entire threads deleted because it means that any comments that still stand, irrespective of any subsequent retractions, clarifications, responses in the light of new information etc that might have been made, get taken down, too.

    For example, I stand by my concerns about Cort using this site to give a platform to an LP practitioner and my concerns about his views on Abraham-Hicks - especially given that Phoenix Rising is now an officially designated 501 3C non-profit organisation.

    I suppose you might consider selectively editing your posts for any comment that you feel in retrospect you'd like to revise and I could then edit out any references to the comments that are no longer relevant - but that might prove a bit complicated in practice.

    What I have done, though, is this. Someone commenting in the comments thread for the ME Association's News page posting which flagged up the new forum has asked who has set the forum up. The MEA's Tony Britton has responded that he does not know.

    So I have posted the following. (It's a premoderated comment facility and the comment has not yet appeared.)

    http://www.meassociation.org.uk/?p=3653


    Comment

    Tony,

    I have joined this new forum and I know in whose name the site is registered and who the forum administrator is, but they are not known to me personally.

    Because the MEA has flagged up the launch of this forum without providing any information about which organisation has set it up, or whether it has been set up by an individual and if so, whether they are affliated to any organisation, this has resulted in some confusion and speculation on a large, international forum over whether this new forum is associated with the MEA or with some other organisation.

    I think it would be helpful if you could edit your post to clarify that this new forum for discussion of XMRV is not associated in any way with the ME Association and also request from the admin, a little background information about who has set it up.


    I'll let you know how Tony responds.

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