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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Xmrv research uk

Discussion in 'XMRV Research and Replication Studies' started by joyscobby, Oct 30, 2009.

  1. Marco

    Marco Old blackguard

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    Is this adequate? I don't think so.


    http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1068&Itemid=216

    Scroll down to Selecting People for further Research Studies.

    "SELECTING PEOPLE FOR FURTHER RESEARCH STUDIES

    There is an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.

    In the present situation, with many research groups reluctant or unwilling to use Canadian criteria, and not having stored samples from patients that meet Canadian criteria, the best way forward may be for everyone to agree to use Fukuda defined CFS. We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.

    Besides using stored blood samples, research needs to involve fresh clinical cases, as well as other disease groups (particularly inflammatory conditions with immune activation) and properly matched healthy controls."


    Its good to see that the ME Association has mentioned the issue of the diagnostic criteria used but what to make of "many research groups reluctant or unwilling to use the Canadian criteria" - why because the discredited NICE guidelines consider them too strict?; "best way forward is for everyone to use the Fukada defintion"; and do they really believe that "We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not." More likely a low percentage of XMRV found in a 'CFS' cohort will be the first nail in the coffin. And this is even in reference to the MEA's own funded research. Why can't they insist on selecting new subjects using only the Canadian criteria?

    I'll be writing as a member of the ME Association seeking clarification and reassurance.

    Cheers

    Mark
     
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi Mark,

    Why is the MEA not recommending use of the more rigorous Canadian Criteria for replication studies?

    Several years ago, the MEA held a formal postal ballot amongst its membership to vote for or against a proposal that the MEA should adopt the Canadian Criteria.

    Several cases for and against adoption were published in the MEAs magazine, ME Essential, with Dr Shepherd presenting the case against adoption. But no medical professionals were invited to present the case in favour, which was viewed at the time as having given undue weight to Dr Shepherd's personal views and opinions.

    Of the very small percentage of the membership that returned a vote, the majority vote was in favour of adoption.

    The MEA announced the adoption in principle of the Canadian Criteria, then deftly kicked the Canadian Criteria under the carpet.

    The MEA's policies, position and direction are largely driven by Dr Shepherd who is also a Trustee/Director of the Board of the MEA as well its Honorary Medical Adviser.

    Dr Shepherd is not committed to the Canadian Criteria and he continues to argue against its use.

    I would think that if the ballot were re-run, today, in late 2009, a significantly larger percentage of the membership would be motivated to return a voting slip and to vote in favour of adoption.

    If you write to Neil Riley (Chair MEA Board of Trustees neilhriley@talk21.com ) please let us know what the Board's response is. If their response can be republished (and since it will be an MEA position statement, they should be prepared to give permission), I would like to publish their response on my site, with your permission, of course.

    I might run a poll on this issue on my website.
     
  3. Alice Band

    Alice Band PWME - ME by Ramsay

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    I have just heard that VIP dx is only offering the double test now and will not be offering the single test options

    Testing will still be going ahead from a lab in London and we only need them to confirm the dates.

    Tentatively they will be

    Monday 7th December
    Monday 14th December
    Monday December 28th

    Please email the organiser at this address if you would like to be included

    contact@xmrvtesting.co.uk
     
  4. H, my doc told me today he can't get it done on the 7th in London after all. :(
     
  5. Alice Band

    Alice Band PWME - ME by Ramsay

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    Sorry to hear that Cold-taste-of-tears,

    Can you join the other group? Not sure who your doctor is.
     
  6. Marco

    Marco Old blackguard

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    I e-mailed the following to Tony Britton of the MEA and his prompt reply is below. Things also appear to have moved on since I sent the e-mail as version 4 of the MEA websire discussion of further studies provides a little more information on their thinking. Still no harm in pressing the issue.



    "Dear Tony

    I am sure that you share the great excitement of whole ME community over the recent Whittemore Peterson Institute study findings strongly implicating the XMRV retrovirus as a possible cause of ME. You should be aware however that there is also some degree of trepidation that, as with past proposed organic causes of ME, follow up studies may prove to be inconclusive or will fail to replicate the findings of the WPI study leading to research interest flagging. A critical issue is that any further research fully replicates the protocol of the WPI study, most specifically that the patients selected for further study are fully representative of the WPI cohort.

    It is therefore with some dismay that I read on the MEA website that the MEA recommend that any further research , including MEA funded studies, should select patients diagnosed using the Fukada definition of CFS. As you are aware the Fukada diagnostic criteria allow the inclusion of patients experiencing chronic fatigue but without other key symptoms such as the post-exercise malaise characteristic of classic 'organic ME'.

    It is critical at this early stage that researchers are able to replicate the WPI findings to firmly establish the science. Further research leading to rigorous diagnostic techniques and possible treatment will then follow. Adoption of the more strict Canadian diagnostic criteria for patient selection offers the best chance of confirming the WPI findings. I appreciate that there may not be stored samples from patients diagnosed using the Canadian criteria but we have waited a long time for research such as this and can wait a little longer if it means doing it right. A much better approach would be to carry out prospective studies using patients diagnosed using both the Fukada and Canadian criteria (as with the ME Research UK/Irish ME Trust funded study due to report in spring/summer 2010). In fact selecting subjects in this way, plus recording a ranked list of symptoms, would avoid the risk of failing to find the percentages found in the WPI study and would also allow XMRV rates to be compared to the various 'CFS' type illnesses' such as IBS, Fibromyalgia and those with fatigue with no other symptoms.

    This may be the best opportunity in a generation to firmly establish an organic cause fo ME. It is incumbent on the MEA, given the importance of this issue, to provide us all with a full explanation of the reasoning behind the proposed research agenda. A detailed article in ME Essential would be ideal .

    Yours

    Mark"



    "Dear Mark

    Thanks for your message about the selection of volunteers for XMRV replication studies.

    As the subject is outside my area of expertise, I'm sharing it with colleagues, including Neil Riley.

    I would guess that Charles Shepherd will want to reply to you, and share his reply with us.

    Best wishes

    Tony Britton

    -----------------------------------------------
    ME Connect, the information and support service of The ME Association
    7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF
    Every effort is made to ensure that responses given are accurate, but they are for guidance only.
    For further information, visit our website at http://www.meassociation.org.uk"
     
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    FOI re UCL (University College London) PhD XMRV study

    Just to confirm that a request for information under the FOIA has now been submitted to:

    The Records Manager, FOI, and Data Protection Officer, The Records Office, University College London, Gower Street, London WC1E 6BT foi@ucl.ac.uk

    in respect of PhD Project: A role for XMRV in human disease


    I had intended submitting this request several weeks ago and I apologise for not having done so, but I have had heavy commitments this last couple of months.

    Requests for information made under the UK FOI Act require that a response is provided within 20 working days. If the information is held, then the organisation, body, agency or institution is obliged to fulfil that request and make the information available.

    "An applicant is entitled to be informed in writing as to whether the information is held and have the information communicated to them. If any of the information is to be refused, the organisation must provide you with a Refusal notice which clearly states the reasons why it is withholding the information you have requested and making clear the appeals process."

    Often the specific clause(s) from the Act under which information is being withheld will be referenced, or cited in full, as part of the response. Responses can be provided in hard copy or electronic format, as emails or as PDF files. Some organisations publish their responses to requests for information on their websites with names and contact details redacted from their response.


    Some organisations have a policy of not sending out responses until the full 20 working days has been reached. Given that we have a long public holiday period coming up, it is unlikely that a response will be received until after the new year.

    It can be frustrating waiting several weeks for a response but the value of requesting information via the Act, is that this is a formal process which an organisation cannot ignore; there is a paper/electronic trail; the process operates according to a timeframe and to well defined regulations; there is a formal process for complaints, appeals (and a Commissioner). It also affords a "buffer" between the applicant and the department from which the information is being sought. This can be useful in cases where a previous polite, direct request for information has been ignored or only partially fulfilled or where a department or individual has sought to obfuscate.


    A couple of further points:

    Requests for information under FOI are frequently processed by FOI and Data Protection Officers, Corporate Information and Policy Officers etc.

    These personnel will often be responsible for processing requests for an entire organisation or academic institution. They will not have specialised knowledge in, or interest in the specific area for which information is being requested. There is no point attempting to use FOI requests as a vehicle for awareness raising, persuasion, discussion or any other purpose, since this is a formal process which operates within the framework of the FOI Act 2000 and is concerned only with the provision of information in accordance with that Act.

    So other than providing your name and contact details, your preference for the format in which the information should be provided and clearly setting out what information you are requesting, it would not be appropriate or expedient to include any additional information, views or opinions.

    Obtain your information first; having done so, then is the time to approach those concerned directly, or their line managers, or whoever, if you have concerns.

    Second point: I have confined my request to the questions below. Once I have this information, I may decide to submit a further request for additional information or for clarification.

    A final point: UK patient organisations, registered with the Charity Commission and/or Companies House are not subject to the Freedom of Information Act - so there is no point approaching the ME Association or Action for M.E. for information and waving the FOIA at them.

    If you are uncertain, rather than waste time and energy, it is always worth checking an organisation's website first to establish whether they come under the FOIA. If they do, there will be a page with contact details for the office or officer that deals with data and information requests and which sets out their policies. Some organisations may offer an online form for submissions which may or may not auto generate a reference number and a copy. It's a good idea to make a copy before you hit the Submit button if you are submitting via an online form.


    Date: 07 December 09

    To: Records Manager, FOI, and Data Protection Officer, The Records Office, University College London, Gower Street, London WC1E 6BT
    foi@ucl.ac.uk


    Re: Request for information under FOIA in respect of PhD Project:


    http://www.findaphd.com/search/showproject.asp?projectid=18971

    Division of Infection & Immunity, University College London

    Project Supervisors: Prof G Towers; Dr P Kellam

    Project title: A role for XMRV in human disease

    Laboratory supervisor: Prof Greg Towers

    Clinical supervisor: Prof Deenan Pillay


    ________________________________________


    I should be pleased if receipt of this request for information could be acknowledged, together with the date by which a response will be provided.

    I request the following information under the Act:


    1] Any Identification or Reference code assigned to Project

    2] Project's Public Title;
    Project's Scientific Title


    3] Study hypothesis/rationale (where applicable)

    4] Ethics approval and any reference numbers attached to this approval

    5] Study design

    6] Countries of recruitment; Centres of recruitment

    Through what means will prospective participants be recruited?



    The Project Application notice states:

    "Xenotropic murine retrovirus (XMRV) has recently been associated with chronic fatigue syndrome as well as prostate carcinoma in humans (1-3)."

    "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."



    7] For what Diseases/conditions/study domains are patient samples to be collected?

    Control group is given as "well but XMRV infected control samples".

    Through what means will control samples be assembled?


    8] Participants - inclusion criteria

    and please also state criteria by which patients are to be defined, eg CDC Fukuda 1994; Canadian Consensus Criteria 2003.

    Will patients undergo functional assessments?
    Who will be responsible for carrying out functional assessments?
    How are patients to be assessed?


    9] Participants - exclusion criteria


    10] Target number of participants

    11] Patient information material: please provide copies of any patient information material

    12] Anticipated start date

    13] Date by which Project is anticipated to complete

    14] Sources of funding

    15] Sponsor details


    Suzy Chapman
    [Full address provided]
     
  8. Marco

    Marco Old blackguard

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    Thanks Catch

    Here is Dr Shepherd's reply which he has agreed can be circulated. I intend to carry on the dialogue once I have a few hours of clear thinking - so if anyone would like any particular points raised?

    Dear Mark

    Neil has asked if I could respond to your email to the MEA about patient selection in XMRV research that might be funded by the RRF.

    This is a complex issue and I've tried to explain the situation in rather more detail in version 4 of the MEA position statement, which is now up on the MEA website: www.meassociation.org.uk

    Very simply, we are looking at a two stage research situation that will hopefully clarify the situation regarding XMRV prevalence in the ME/CFS population at some point in 2010, and (depending on the results) then move on to looking at viral pathogenicity in more detail (ie is this a disease causing virus?) and antiviral treatment. Incidentally, the results of a new research study looking at the use of AZT as a possible treatment for XMRV will be up on the MEA website later today: www.meassociation.org.uk.

    As you know, the WPI study used patients who met both Fukuda research criteria and Canadian clinical criteria - partly because scientific journals don't accept the validity of the CCC as a valid research tool..

    Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material >> stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any. So there was no point in the MEA insisting that research funding in stage one could only be used in studies involving Canadian criteria patients, or CC + Fukuda.. I therefore suggested that these 'first off the mark' studies should only involve Fukuda criteria patients as here in the UK there is a real worry that retrovirologists, who have very little general knowledge of ME/CFS, might be using samples from patients from NHS sources that meet either Oxford research or even NICE clinical criteria - the latter being used by the NHS clinics. It would have been helpful if the paper itself had carefuly specified the selection criteria because I know that there are researchers taking this forward on the basis that CFS in the paper = CFS Fukuda.

    As far as the second stage is concerned, we would certainly be looking at funding a study that would use Fukuda plus Canadian criteria but there are still going to be major problems and we cannot be dogmatic here. This is because the NHS services do not use Canadian criteria in their clinical assessments and most of us who work in the UK private sector don't have sufficient numbers of new patients coming through to quickly build up a decent number (ie 100 cases) meeting both criteria, and we don't tend to be dogmatic about the use of criteria in patients already diagnosed.

    And this may be why MERUK has decided to fund a study in Sweden rather than here in the UK. The MEA would prefer to fund UK XMRV studies but we are willing to look at overseas proposals - as has already happened.

    As you will have seen I have spent a great deal of time over the past few weeks talking to virtually all the virologists and retrovirologists here in the UK that are interested in taking this work forward, and the MEA is very keen to help in whatever way we can. I hope the researchers are now well aware of the issues surrounding careful patient selection (some of them were definitely not) and not just the science behind XMRV.

    I hope you find this helpful.

    I would be happy to discuss in more detail if you would like to call me on my home number when convenient.

    Regards

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    (This information may be forwarded if you wish to do so)
     
  9. Katie

    Katie Guest

    Charles Shepard has just gone up in my estimation now I've heard why he's been backing Fukuda. No questions spring to mind as I'm off out in a minute but I'll try and think of something later.

    Nice work Marco, very nice indeed, Katie
     
  10. Min

    Min Senior Member

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    Thank you so much Marco, that really has answered the question! He has gone up in my estimation too.

    I wonder if it would be possible for you to ask him if the research will include the severely affected who are at housebound and the most severely affected who are bed bound? I know it would be difficult to collect the blood, but little seems to be done on researching these groups. thank you
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Catch

    I based my preliminary questions on this, which is actually for registering controlled trials, but provided a format:

    http://www.controlled-trials.com/isrctn/applications/FieldDefinitions.htm


    It may be the case that this project is at too early a stage for all questions raised to be provided with answers and I very much doubt a response will be provided before the new year.

    But I'll keep the thread updated.

    Suzy
     
  12. parvofighter

    parvofighter Senior Member

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    UK Medical Research Council Programme on XMRV

    Thought you folks in the UK might be interested in this Hansard posting from December 7th, UK House of Commons: http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm091207/text/91207w0010.htm

    Written answers for 7 Dec 2009 :
    Column 46W
    Biomedical Research
    Paul Rowen: To ask the Minister of State, Department for Business, Innovation and Skills what biomedical research into myalgic encephalomyelitis and xenotropic murine leukaemia virus-related virus is being undertaken. [304330]
    Mr. Lammy: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.
    In 2008-09 the MRC's total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to 728,000. This supported four projects including a 164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.
    The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed. A note of the discussions will be published on the MRC website in due course.
    The MRC's National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems.


    I'm not completely sure how CFS/ME as a "strategic priority" jives with a 2000-8-9 budget of only 728,000, but then again, I also have no clue how big the MRC's net budget is. Hopefully this priority will translate into more aggressive XMRV funding in the near future.

    Hope this helps you guys. From your neighborhood Canuck.
     
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Thank you parvofighter for spotting this. Marc-Alexander Fluks usually puts (UK) Hansard written answers out on Co-Cure and other lists - but you have beaten him to it this time, and I've sent it out on Co-Cure.


    According to an unofficial summary published by Dr Charles Shepherd on behalf of the ME Association following the APPG on ME meeting, on 2 December:



    *This is the project for which I have submitted an FOI: http://www.findaphd.com/search/showproject.asp?projectid=18971

    **Information on the ME Research UK and Irish ME Trust Swedish study can be found here: http://www.meresearch.org.uk/research/projects/xmrvsweden.html

    You wrote:

    Details for only one of four MRC studies have given in the parliamentary response. I will endeavour to establish, specifically, the other three.

    In the meantime, the following may be of interest:

    Source: ME Research UK

    http://www.meresearch.org.uk/information/publications/casetoanswer.html

    The Medical Research Council: a case to answer?

    [...]

    CFS/ME projects currently funded by the MRC

    (Sources: MRC website; Hansard, written answers)


    Two large clinical trials of new approaches to treating CFS/ME:

    PACE (Pacing, Activity and Cognitive Behaviour Therapy: a Randomised Evaluation, 2,076,363) [Prof. PD White, Psychological Medicine, Queen Mary and Westfield College]

    FINE (Fatigue Intervention by Nurses Evaluation, 824,129) [Dr AJ Wearden, Psychological Science, Uni. of Manchester]

    A preliminary epidemiological project to test the feasibility of identifying the risk factors for persistent symptoms of fatigue and abdominal and widespread pain (118,263) [Prof. F Creed, Psychological Medicine, University of Manchester]

    An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]

    Indirect support through a trial exploring the management of patients with persistent unexplained symptoms [Specifics unknown]

    One project was mentioned in Hansard (12th June 2008) but is not on the MRC website: General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes (367,000) [Dr C Clark, Centre for Psychiatry, Barts and The London School of Medicine]


    Table. Unfunded applications to the MRC between 2002 and 2008

    Time-frame (number of applications) CFS/ME subject area


    2002 to 2005 (11 total) Neurophysiology of fatigue; Population-based/epidemiological studies (4 applications); Neurotransmitters and stress; Neuroimaging; Clinical and laboratory characterisation physiology/diagnosis); Dietary intervention RCT; Facilitated self-help RCT; Psychosocial and genetic factors in young people

    2005 to 2006 (12 total) Pathophysiology, including studies regarding genetics/biomarkers, immunology and neuroimaging (7 applications); Population-based/epidemiological studies (3); Primary care study; Experimental medicine study

    2006 to April 2007 (7 total) Cognitive outcomes in children pathophysiology; Epidemiological studies epidemiology; Biomarkers; Pathophysiology (2 applications); Molecular pathogenesis pathophysiology; Molecular and genetic characterisation pathophysiology; Neuroimaging pathophysiology

    May 2007 to June 2008 (3 total) Biomarkers pathophysiology; Management and treatment intervention; Management and treatment observational study
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    From MRC site

    (Still unclear what the other three projects are.)

    http://www.mrc.ac.uk/Ourresearch/ResearchFocus/CFSME/index.htm


    Current MRC-funded research projects

    The MRC currently supports the following projects relating to CFS/ME (as at 1st July 2009):

    Dr C Clark
    Queen Mary College, University of London
    General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes

    Dr P White
    Queen Mary College, University of London
    The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome


    Recently completed projects

    Professor K Bhui
    Queen Mary College, University of London
    Chronic Fatigue & Ethnicity

    Professor F H Creed
    University of Manchester
    The feasibility of a population based study of CFS, IBS and CWP

    Prof R K Morriss

    University of Liverpool
    Exploratory RCT of training General Practitioners to mange patients with persistent Medically Unexplained Symptoms (MUS)

    Dr A Wearden
    University of Manchester
    Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome


    Further information on current research supported by the MRC, which includes CFS/ME can be found on the MRC portfolio.

    http://www.mrc.ac.uk/ResearchPortfolio/index.htm
     
  15. Marco

    Marco Old blackguard

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    Written answers for 7 Dec 2009 :
    Column 46W
    Biomedical Research
    Paul Rowen: To ask the Minister of State, Department for Business, Innovation and Skills what biomedical research into myalgic encephalomyelitis and xenotropic murine leukaemia virus-related virus is being undertaken. [304330]
    Mr. Lammy: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.
    In 2008-09 the MRC's total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to 728,000. This supported four projects including a 164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.
    The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed. A note of the discussions will be published on the MRC website in due course.
    The MRC's National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems.



    Many thanks for this Parvofighter

    I may be able to give a little insight into this answer.

    First off - civil servants acting on behalf of the government cannot lie (sic) to parliament. However the intention in answering PQs is not necessarily to answer the question intended but to interpret and answer the question in a way that presents the government in the best possible light.

    The PQ will be received in a co-ordination branch and farmed out to those responsible departments for part input. A senior civil servant will then co-ordinate the response with an eye to government policy and presentation.

    It is obvious that the question is seeking information on how much the goverment is spending on research into XMRV as a possible organic cause of ME/CFS.

    The response states :

    (a) that the MRC spent 728,000 on ME research including 164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes;

    (b) that The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed;

    (c) The MRC's National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems;

    (d) CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.

    The concatenation of these facts suggests that XMRV/ME research is a UK government priority and is funded accordingly.

    What they don't say is :

    in (a) what proportion 728,000 respresents of the total MRC budget and how this compares to other research areas; that the MRC has funded mostly pyschologically based ME research and rejected applications for research into organic causes (as per MeAgenda's post); or whether the Queen Mary College research has anything to do with XMRV or any organic risk factors;

    in (b) big deal! - top of the agenda, bottom of the agenda, discussed over coffee and scones?

    in (c) I'm sure they are researching retroviruses but not in the context of ME;

    as for (d) In my book its easy to say something is a priority but this only becomes a reality when action and funding follows. The MRC research record and the 2 million plus to fund the PACE study suggests something completely different.

    The only way Paul Rowan can nail them down is to ask very specific questions that can't be ducked or finessed.
     
  16. parvofighter

    parvofighter Senior Member

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    Hansard response raises more questions

    I agree Marco - the Hansard response raises more questions than answers. I just had this vague sense - "strategic priority means nothing unless you can at a very minimum see the ME/XMRV funding as a % of total MRC budget". You really nailed it:

    @Marco, you also brought up a hot point, that has me smacking my chops. From the unofficial summary published by Dr Charles Shepherd on behalf of the ME Association following the APPG on ME meeting, on 2 December:

    Now THAT has got my juices going. Anyone have more scoop on these rep studies?
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    The ME Association has added the Rowan Written Answers to its News Page, this afternoon, prefacing the Hansard transcript, gushingly, with:

    "Liberal Democrat MP Paul Rowen has been nailing his colours to the cause of biomedical research into ME lately. In the latest of a series of written Parliamentary Questions, the Rochdale MP asked the Secretary of State for Business, Innovation and Skills what biomedical research is being undertaken into ME and the XMRV virus."

    Marco, I do hope you are going to make these points to Dr Shepherd when you write back to him.

    I have included some quotes from Dr Shepherd's response (but not your original queries and concerns, since I did not have permission to publish) in a mailing, on Co-Cure, this evening and I have published his response, in full, on my own site.

    The MRC has had research into CFS and ME on a highlight notice for years; it has been convening workgroups, holding consultations and talking about wanting to fund "high quality" CFS and ME researcch since 2003; in 2006, Action for M.E. and the MRC held a joint "Research Summit" - the list of participants had to be obtained under FOI.

    The keynote address at the "Research Summit" was given by Dr Bill Reeves.

    In 2008, under the chairmanship of Prof Stephen Holgate, another "CFS/ME Expert Group" was set up, and there has recently been a workshop stretched over two days (the Agenda and Participant List is up on my website). The MRC has not published a note of the meeting, yet.

    "It's good to talk" but so far that is all the MRC has been doing...

    In its latest version of

    XMRV and ME/CFS? What do we know so far? And what don't we know?
    (version 4)


    published 27 November 2009, The ME Association wrote:

    It's not included in Dr Shepherd's response to you, but since it's pertinent, I wonder if you would consider asking Dr Shepherd if he would elaborate on the statement highlighted in blue, please, as I consider that there may be many who would welcome Dr Shepherd setting out on what exclusion criteria "a significant proportion of people with Ramsay-described ME" will not meet Fukuda criteria for CFS?

    I would ask Dr Shepherd to elaborate, myself, but the ME Association Board of Trustees barred me from holding a membership of the Association, several years ago, and Dr Shepherd no longer engages (Neil Riley will engage, but he would need to refer on to Dr Shepherd).

    Suzy Chapman
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi parvofighter,

    I have a new contact - a patient who has just been a participant in the ME Research UK/Irish ME Trust funded Swedish replication study. I have asked to be kept up to speed with any updates on progress. The Swedish study is said to be using Fukuda and CCC criteria.

    According to the ME Research UK website, results of this study should be available in the Spring/Summer of 2010 - so I wouldn't think Dr Shepherd was referring to that study.

    The following is speculative:

    According to the unofficial summary published by the ME Association following the APPG on ME meeting on 2 December:

    The Towers/Kellam project is a PhD project which has only recently been advertised, so we can rule that out.

    The address of two researchers highlighted in blue, Stoye and Bishop is National Institute for Medical Research.

    The address of the NIMR is: Mill Hill, London NW7 1AA, UK.

    Dr Jonathan Stoye had co-authored the Perspectives commentary with Coffin:

    PERSPECTIVES

    Virology
    A New Virus for Old Diseases?
    John M. Coffin and Jonathan P. Stoye (23 October 2009)
    Science 326 (5952), 530. [DOI: 10.1126/science.1181349

    A New Virus For Old Diseases by John M. Coffin1 and Jonathan P. Stoye2

    1 Department of Molecular Microbiology, Tufts University, Boston, MA 02111, USA. E-mail: john.coffin@tufts.edu
    2 National Institute for Medical Research, Mill Hill, London NW7 1AA, UK.


    On 2 December, a number of contacts attended the All Party Parliamentary Group on ME (APPG on ME) meeting in a House of Commons Committee Room.

    One contact took a notebook and a dongle with him and throughout the meeting, emailed "live updates" (and it was a very "lively" meeting) to his Yahoo! Group message board for the benefit of those of us who were unable to attend.

    This was very useful because the chair, Dr Des Turner MP, had apparently omitted to clarify when an electronic version of an interim report, which had already been presented at the meeting, would be made available. So I was able to email my friend during the meeting to ask another colleague to raise this with the chair - which he did and Turner's response was emailed back to us - ain't technology wonderful.

    During discussion of XMRV, Dr Turner is reported as having said that "XMRV research in Mill Hill looked quite promising" but had urged against getting too excited just yet.

    We won't have the official minutes or the verbatim transcript for many weeks yet, so I cannot confirm precisely what Dr Turner had said, or the specific context.

    But speculatively, Dr Turner may have been referring to current work being undertaken by Stoye or Bishop, at NIMR, Mill Hill.

    In the unlikely event of an early set of minutes and a transcript I will let you know exactly what was said.

    Alternatively, Marco might consider asking Dr Shepherd to clarify which specific researcher/study Dr Turner had referred to at the APPG meeting when he mentioned "Mill Hill" and whether this is the study for which we might anticipate some early results.

    BTW, this "first stage" and "second stage" rationale for calling for Fukuda, then for both Fukuda and CCC is new. I will have to check, but I am pretty sure it did not appear in Version 3 of the MEA's document:

    "XMRV and ME/CFS? What do we know so far? And what don't we know?"

    I suspect this concept has been introduced to provide Dr Shepherd with some wriggle room, since his earlier calls for Fukuda over Fukuda + CCC have met with criticism.

    Several years ago, the MEA held a formal postal ballot amongst its membership to vote for a proposal that the MEA should adopt the Canadian Criteria. Several cases for and against adoption were published in the MEA’s magazine, ME Essential, with Dr Shepherd presenting the case against adoption. But no medical professional had been invited to present the case in favour, which was felt at the time to have given undue weight to Dr Shepherd's personal views and opinions.

    Of the very small percentage of the membership that returned a vote, the majority vote was in favour of adoption. The MEA announced the adoption “in principle” of the Canadian Criteria, then deftly kicked the Canadian Criteria under the carpet and have done nothing since to promote its use.

    So I'm afraid this shuffling about with "first stage" and "second stage" doesn't convince.

    So Marco, if you are collating questions for Shepherd, that's two I would be interested in having raised:

    1] If he would elaborate on the issue of the exclusion of "a significant proportion of people with Ramsay-described ME" that will not meet Fukuda criteria for CFS?

    2] a) To which research study was Dr Turner referring when he commented on "quite promising" XMRV research at "Mill Hill", at the December meeting of the APPG on ME? b) Which replication study might be anticipated to produce some early results before the end of the year?

    Suzy
     
  19. parvofighter

    parvofighter Senior Member

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    Canada
    GREAT info MEAction!

    MEAction, thanks so much for this great info.

    That's fabulous that the Swedes are using Fukuda and CCC criteria. Dr Coffin's comments have been really riveting - particularly since he (and many virologists it seems) are more interested in the virus and curing ME, prostate cancer, etc, than political quagmires established by special interest camps (i.e. Wessley, Reeves). So by association, I'm especially interested in what Dr Stoye will have to say - and of course the Mill Hill results.

    Thanks also for specifying what is speculation - great transparency! Can't wait to hear more!
     
  20. Marco

    Marco Old blackguard

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    Hi Folks

    When I get some time and energy over the weekend I'll compile some follow up questions for Dr Shepherd.

    I feel we have a useful dialogue going on here and I'd like to keep it running on the XMRV studies topic rather than straying off into Hansard answers. I'm also loathe to question him on rumours or off the record statements.


    My own initial thoughts on his reply are that the MEA or other advocacy groups shouldn't be concerned about being amongst the first to replicate or refute the WPI findings but should be using their advocacy role to try to educate and warn the virologists about the various definitions. They don't appear to be short of money anyway by most accounts. Any MEA research, in my view, should aim to be 'gold standard' and therefore should be prospective and should be selecting subjects using both Fukada and Canadian definitions. If private practitioners do not have enough patients to satisfy the numbers required then they should recruit.

    I'll post my suggested follow ups before contacting him again.

    Regards

    Mark
     

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