Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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Discussion in 'Active Clinical Studies' started by Cort, Nov 14, 2009.

  1. Cort

    Cort Phoenix Rising Founder

    Note that University College London (UCL) is not the same institution as King's College London (KCL). It is not established what criteria are to be used or from where patient samples are to be sourced. As an academic institution, UCL will be subject to FOIA and it may expedient for this information to be requested.]


    Dept/SchoolDivision of Infection & Immunity, University College London
    Project Supervisor(s)Prof G Towers

    Dr P Kellam
    Funding AvailabilityCompetition Funded Project (European/UK Students Only)

    Application Deadline 23 November 2009

    A role for XMRV in human disease

    Laboratory supervisor: Prof Greg Towers

    Clinical supervisor: Prof Deenan Pillay

    Xenotropic murine retrovirus (XMRV) has recently been associated with chronic fatigue syndrome as well as prostate carcinoma in humans (1-3). XMRV is a murine endogenous virus found in the genome of mice and until recently has been thought to be absent from the human population. It is now becoming clear that XMRV has transmitted to humans by a process of zoonosis, presumably from mice, and appears to be associated with a variety of diseases not previously associated with viral infection.

    1. We will establish quantitative PCR assays and serology assays including enzyme linked immunosorbant assays (ELISA) to detect and quantify XMRV. Importantly, assays used to detect related murine leukaemia viruses in the lab are expected to be suitable.
    2. We will use these assays to measure XMRV load in chronic fatigue patient samples as well as, well but XMRV infected control samples, with a view to establishing whether viral load relates to disease, episodes of illness and/or severity.
    3. The receptor for XMRV has been identified. We will seek human polymorphism in the xenotropic receptor and assess which human cells express it. We will also establish which cells in vivo in blood express the receptor and which cells are infected with XMRV by quantitative PCR on sorted subsets of B and T cells from XMRV infected individuals.

    This project proposes to address some of the most important questions surrounding the recently described XMRV infection of humans and to seek a therapeutic strategy for XMRV treatment. We expect it to be a competitive project and the experiments performed are likely to be influenced by ongoing studies published as we go. We expect that the candidate will be fully trained in modern techniques of molecular virology during the course of this project.

    TO APPLY Send THREE COPIES of your CV (including full contact details of two academic referees) a personal statement and an indication of your top two preferences, on a separate page, from the list of projects below to:

    Isabel Lubeiro, Division of Infection & Immunity, Windeyer Building, 46 Cleveland Street, London W1T 4JF.
  2. Min

    Min Guest

    If they use the Oxford guidelines (developed by the Wessely school of psychiatry) for selecting patients they will end up 'studying' a variety of fatigue states including depression and not neurological M.E./CFS.

    The cynic in me thinks they will deliberately do so in order to declare that there is no xmrv in the UK.
  3. jenbooks

    jenbooks Guest

    I think they sound sincere. And human polymorphism in the xenotropic receptor is key.
  4. leelaplay

    leelaplay member

    The wording of this arouses two concerns for me.

    1. they use the term chronic fatigue syndrome at the beginning, but then chronic fatigue in the planned research descriptor. If they don't know the difference, then how valid can the research be?

    2. They don't say what definition of ME/CFS they will be using

    I think ME Agenda said on another thread where we were discussing this that s/he would use the FOIA to get this information.

    My hope is that someone reading this knows someone at UCL who is in a position to make sure that this research is done properly!

  5. Min

    Min Guest

    Did I read somewhere that Peter White is offering to supply the patients from his clinic? If so, they'll not be studying M.E.
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I am intending to submit an FOI request for information to UCL.

    Requests under FOI are expected to be responded to/fulfilled within 20 working days if the information is held by the institution. If it is not held, then the institution is under no obligation to obtain the information from other establishments/organisations/institutions in order to fulfill the request.

    So, my initial requests may have to be redirected to another institution if this information is not currently held by UCL.


    At the October meeting of the All Party Parliamentary Group on ME (APPG on ME), Colin Barton (Chair, Sussex and Kent ME and CFS Society) was reported as having said something in relation to Barts (Professor Peter White) planning (unspecified) XMRV Retrovirus studies.

    No-one has been able to clarify for me exactly what it was that Mr Barton had said around Barts and XMRV or whether he had addressed his comments to the APPG chair (in which case his comments might be transcribed) or in an aside.

    Since the Minutes and the official, verbatim transcript of the October meeting won't be available for another couple weeks and as I prefer not to rely on speculation, I contacted Mr Barton on 2 November for a clarification.

    I asked if he could confirm whether any study in which Barts might have some involvement related to the UCL PhD project which has been posted above, and if not, what of type of study Barts might be planning.

    Mr Barton's response was that "Barts have no immediate plans to replicate now as two other London groups are already doing this, as well as the CDC."

    Mr Barton had no information on whether "the two other London groups" included the UCL PhD project of which we are already aware.
  7. Ohh the wonderful Mr Barton the patient representative! No doubt he will be pleased to help influence an appropriate cohort of 'patients'.

    The ones Professor White treats with magic and exercise bikes.

    For those unaware of Professor Peter White, his dollshouse is here:

    Thanks for all your stalwart efforts into trying to discover information for us all.
    Very much appreciated, ME Agenda.
  8. Hi Min, it's not the cynic in you, it's the wisdom. ;)

    They will naturally declare there is no XMRV, (after all The ME Assocation have said don't bother going to an NHS GP to ask for an XMRV test as it doesn't exist and it's unknown what it means). Now the average person in KFC might fall for that, but the average patient has read about a billion articles on XMRV by now, and knows very well what it means.

    Thanks to the internet. Hence the Wessely School says stay off the internet - it delays recovery. (Seriously). In other words, prevent the patient from being informed.

    Well that's the political spin from Mr post Chickenpox fatigue, Dr Shephard.
    That we must not go to people who are paid to help us, doctors.

    The reality is many people from the UK are in the queue for the XMRV test, and some have organised it behind the scenes. :p

    We'll get tested, and if we're positive we'll announce it to our health
    authorities, who will then wobble around quoting that no one knows what this means.

    And then the lawyers letters will start flowing.
    First a trickle, then a flood.

    Nothing can stop the tide washing over their little tootsies, poor dears!
    They will regret the day they soiled our suits and prom dresses that were never worn when legitimate claims for millions of $ in damages are made, from individual patients.

    If XMRV is significantly treatable with existing anti viral drugs (As Dan Peterson has been doing for decades) - then damage is proven, because these viruses don't need XMRV to be detected. (Co Infections).

    The NHS in Britain have stated do not test patients as they are mentally ill, and this only encourages them to somatize. (''De - Medicalise'') is the policy.

    That was an error of epic proportions when it comes to claiming future liability as a claimant against medical insitutions who could and should have tested for on-going infections.

    If patients improve on existing drugs, and return to work, return to life, simply from having non retroviral medications - it's a simple case of medical negligence - caused by disinformation by their OWN advisors.
    (Wessely School).

    So as far as I care, Professor White and the goon show can say what they like. They're just making it worse for themselves as this too will be presented as evidence of collusion with insurance companies because they aren't using the Canadian criteria. If not, why not?

    To replicate a study - one must use identical protocol to measure what needs to be measured. Yet they are arrogant enough to think no one will check, ask, demand proof.

    So they announce (idiotically) before hand, they aren't using the Canadian criteria that the WPI used - automatically invalidating their findings. It's like claiming one cannot replicate raised blood glucose in diabetics, in patients without unexplained weight loss/polyuria/fatigue - the key symptoms of having raised blood glucose.

    And then when being asked to measure blood glucose, them saying no - we'll use different criteria for diabetes and having raised blood glucose for our version of diabetes - isn't important.


    Yes, they are that dumb. The spin machine is going to rock itself off it's hinges soon as they've run out of cover stories.
  9. Leitwolf


  10. free at last

    free at last Senior Member

    Maybe there worried about Kate Bishops study incase shes sincere, and might just trot another one out incase she finds something, Ok i know forever the sceptic, but who will be the paitients is only half of it, the science matters too and i just dont know what to think about this if Peter white has any involvment then alarm bells should be ringing loud. I cant belive a british group has actually said this

    :It is now becoming clear that XMRV has transmitted to humans by a process of zoonosis, presumably from mice, and appears to be associated with a variety of diseases not previously associated with viral infection:

    What the hell is going on, is this somekind of mind trick or something ? are they admiting here there is solid evidence of infection from XMRV ? because it certainly appears so, and well im just flabbergasted a british group would be admitting that in print before a study ?

    Im lost, as i dont trust Peter White, and i wouldnt trust the paitient selection, hey maybe i should contact them and say im pretty depressed, i have a lot of fatigue had a diagnosis of CFS years ago but doing really well now, they will think great another negative, but i tested + 3 out of the 4 best methods used. But they wont know that lol. unless of course they read here. Would be interesting to see if indeed they picked it up wouldnt it, im not seriouse i dont think i should apply, but then again hmmm should i ?
  11. lancelot

    lancelot Senior Member

    southern california
    All UK XMRV studies are biased (always negative) and rubbish unless it's done by an American(ie: Mikovitz) or KDM.
  12. Francelle

    Francelle Senior Member

    Victoria, Australia
    What's your beef lancelot? You keep making one-eyed, discriminatory remarks about the UK which are getting rather repetitive and tiring.

    It may be true that there is something sinister afoot in the UK regarding M.E. research.....but if anything, it is very sad and heartbreaking. The greater evil is that of the calculated and singular approach by some otherwise smart people who have managed to steer and control the opinions and mindset of other medical professionals and the media, regarding this disease.

    We need to be compassionate and supportive of our fellow British M.E. sufferers. The U.K. is as beautiful a country as anywhere else on this planet - however regarding M.E. there are some extra problems!
  13. lancelot

    lancelot Senior Member

    southern california
    Moderator: This post is another anti-British rant, offensive to many of our British members. Please stop doing this now or we will have to take further action. Please take this as your final warning.
  14. maryb

    maryb iherb code TAK122

    Errr right Lancelot I hear what you're saying but its wrong, we aren't letting nationalistic pride blind us to what is right and wrong, we're a bunch of very sick people who are have been treated in the same way as sick ME'ers in the US have been.
    We are getting there slowly as is the way of the sick, I've never been involved in contacting MP's, DoH, MRC et before but over the past year have done so, I feel we are making the same effort as our american cousins, what we can when we can, don't forget the health service here is totally different to yours. and the people running the show have built up reputatons over the years which will take some demolishing, what was built up over 30years can't be knocked down in a day.
    I feel more positive today than I did 2 years ago, I feel real science will help put right the wrongs eventually,just hoping it comes in time for the very sick.
  15. free at last

    free at last Senior Member

    At last less advice and more understanding ty for that.
  16. free at last

    free at last Senior Member

    I agree Mary Lancelot makes it sound like its our fault because we havent had a ME/CFS revolution lol, do we really need to point out its not that simple ? and that the situation maybe far worse than in America. And why does Lancelot keep forgeting AMERICA THE GREAT also had REEVES do EXACTLY what good ole wessley has done to the Brits ? ? ? Only difference is ALTER ( and the WPI ) CAME RIDING IN LIKE JOHN WAYNE AND SAVED HES BACON. if they hadnt, guess what ? he would also be up shit creek too. JUST LIKE US, is Lancelot really that naive in thinking if Alter had found zero zilch. then all this NEW communication thats been happening with the patients and goverment agencies is a DIRECT RESULT of Alters positive study

    We will see what happens if LIPKIN finds ZILCH. And things take a turn for the worse for America. And ill be the first to say to Lancelot YOU KNOW YOU REALLY SHOULD SPEAK OUT, YOUR NOT REALLY DOING ENOUGH TO CHANGE THIS SORRY STATE OF AFFAIRS AS A GROUP OF PATIENTS, You all should be so angry, how come your not ? get of your arses and do something about it ANYWAY ITS NOT MY BUISNESS TA TA. lol.

    Ok that was sarcasm but its needed im afraid.

    Others in the uk have spoken out, i pointed this out to Lancelot before, but sadly for some reason he really doesnt listen. Proff HOOPERS magical medicine how to make a disease dissapear is a prime example sent to all revelent departments in govement and health in the UK, But largely IGNORED.

    One other thing Wessly did such a great number on on us patients in the uk, that the uk publics mis perception of this disease can be related to hes ( Wessleys ) and others belief that it is a illness all in the mind. So public outrage ( the only real chance of having a LANCELOT TYPE REVOLUTION ) is not going to happen without huge public support.

    And im afraid even some of my family members dont know whats going on. if to trust strange old dad with hes ill one minute LOOKS FINE TO ME THE NEXT weird so called disease. or listen to the uk Health experts who do a fine job of convincing the uk public, that yes its all the patients fault. One reason why the Uk health department and goverment are so concerned with a shift in public opinion in the uk. Because if that happens then yes maybe we have a real chance to actually change what the likes of Wessley has done to us all. But untill then Proff Hoopers large assesment of the actual situation in the uk regarding the illness, and the stubborness or corruptness of those in power in the uk really proved once and for all, that YES SOME PROMINENT PEOPLE IN THE UK HAVE TRIED TO STAND UP TO THE GOVEMENT ( like Alter ) But guess what Lancelot they have largely failed.

    But i suppose Lancelot knows whys. because we as patients are not angry enough. we havent gone running down the streets with machine guns and taken the goverment in one massive ME/CFS COUP lol. Really Lancelot for some one who seems fairly intelligent, im amazed how naive and self patriotic you really are. can we end this nonesense. or i do i really have to keep spelling out how wrong you actually are.
    The reason i wrote this reply in such a way, is not because im actually anything like this as a person, but i thought i would try talking a little and with blinkered views and attitude the way Lancelot keeps speaking to uk patients. Absolutely no offence to any Americans
    Ive said before and ill say again, we are in a huge debt to America for what they have done for for UK patients ( and all around the world ) My comments are all tounge in cheek. Even though essentially correct. ok lets have solidarity please Lancelot. I might have to start ignoring certain posts otherwise
  17. markmc20001

    markmc20001 Guest

    I'm a bit flabbergasted myself at the seeming acknowledgement that XMRV has been transmitted to humans. Maybe this is the study they intended to be hidden in that pile of stuff unitl 2070 or whatever? That's not a serious question. But the Name "Towers" sounds familiar, wasn't some scientist named "Towers" responsible a few days ago for releasing one of the "five" PCR contamination studies that did nothing but confuse everybody? I mean those contamination studies didn't prove anything except that PCR is not a good way to test for XMRV the way I understood Dr Gordon statement.

    However, key point here is transmitted by "zoonosis". I haven't seen much debate here about whether the disease has been transmitted by zoonosis or something else. Be interesting to see how they arrived to that "zoonosis" conclusion.
  18. Sam Carter

    Sam Carter Guest

    Hi Mark,

    I think it would be fair to say Professor Towers no longer believes that XMRV is a zoonotic infection acquired from mice :rolleyes:. The job advert is dated Nov 2009 and he is, of course, a co-author of one of the Retrovirology papers and now argues that XMRV is not a genuine human pathogen. His statements to the press are not fully supported by his own paper and, in time, he may wish that he had been more circumspect.


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