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Xmrv research uk

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

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Feb 2005 Amolak Bansal issue

    This was a huge issue in early 2005. This job vacancy and a similar one in Liverpool were withdrawn following complaints from individuals and charity reps. Formal apologies was issued on behalf of the NHS CFS/ME Clinics Network, by Dr Fred Nye in Liverpool and NHS officials.

    I published both ads via Co-Cure at the time.

    If my memory serves me well, I think Amolak Bansal also hosted a Peter White PACE Trial promotion event.

    Read it and weep...

    ~~~~~~~~~~~~~~~~




    Job vacancy 2:

    Employer: Epsom and St Helier NHS Trust

    Job title: Highly Specialist Clinical Psychologist in Chronic Fatigue
    Syndrome Management


    Chronic Fatigue Syndrome Service, Sutton Hospital
    Ref: HJUK/ZP/238

    Managerially accountable to:
    Dr Amolak Bansal (Consultant Immunologist) Service Manager for
    Chronic Fatigue Syndrome Service


    Professionally accountable to:
    Dr Angela Tomkins Principal Clinical Psychologist, Chronic Fatigue
    Syndrome Service

    Closing date: 18 March 2005

    For further details / informal visits contact:
    Dr Angela Tomkins, Clinical Psychologist - Chronic Fatigue Service on
    0208 2936 4152 or, Dr Hilary Rankin, Trust Professional Lead for
    Clinical Health Psychology on 0208 296 4317

    "As a result of a successful bid for government funding, an exciting
    opportunity now exists for a newly or recently qualified Clinical
    Psychologist to join an innovative new service for people with Chronic
    Fatigue Syndrome. The successful applicant will contribute to the provision
    of assessment, and individual and group therapies for patients across the
    full age range in the local area."

    "In addition to direct clinical work, the service has a remit to contribute
    to the development and provision of education, training and support to
    health professionals working with people with CFS in the local PCTs.
    The service has links to a nationwide Network for CFS services to
    support its service development initiatives."

    "The multi-disciplinary team will comprise of a Consultant Immunologist,
    Clinical Psychologists, Occupational Therapist, Physiotherapist and Clinical
    Nurse Specialist amongst others. A Clinical Psychologist with considerable
    experience of working with patients with chronic conditions is already in
    post."

    "WORKING ENVIRONMENT

    The CFS Service provides an expert multidisciplinary assessment and
    management service for people with persistent fatigue for whom medical
    intervention is no longer appropriate.

    Patients referred to the service often present with complex medical and
    psychological problems, are highly distressed and may have difficulty
    accepting and be hostile to the rationale for adopting a
    cognitive-behavioural approach to the management of their fatigue.

    Engaging these patients in the service requires sensitive discussion and
    skilled multi-disciplinary management. The CFS Service aims to help people
    with chronic fatigue to improve their quality of life, reduce distress and
    health care usage and where possible, return to work through a
    multidisciplinary cognitive-behavioural programme.

    The CFS Service aims to develop both group and individual multi-disciplinary
    programmes to extend services to those individual patients who have
    challenging presentations including high levels of distress and disability,
    interpersonal difficulties and co-morbid physical and mental health problems
    that mean that a group management programme is not suitable.

    In addition, patients using this service may have problems of an intimate
    nature eg sexual difficulties, history of trauma or abuse, which are not
    suitable for treatment in a group setting.

    Key result Areas

    Clinical

    1. Working with the principal clinical psychologist, to provide a
    comprehensive, specialist psychological assessment for patients referred to
    the CFS Service. This input will be based on the appropriate use,
    interpretation and integration of complex data from a variety of sources
    including psychological tests, self-report measures, rating scales and
    semi-structured interviews with clients, family members and others involved
    in the client's care.

    2. To work closely with the multidisciplinary team to evaluate and make
    decisions about treatment options, taking into account a range of both
    theoretical and therapeutic psychological models and highly complex factors
    concerning historical and developmental processes that have shaped the
    individual or family.

    3. To be responsible for helping to develop and for providing clinical
    psychology input on a group management programme. This involves utilising a
    range of skills including

    Delivering complex concepts and ideas to groups of patients

    Managing challenging group dynamics

    Managing and containing individual patients and group needs in a
    highly sensitive manner

    4. To provide appropriate advice on chronic fatigue management to,
    often highly distressed, patients while at all times maintaining awareness
    of professional boundaries.

    5. For patients referred to individual psychological therapy programme
    for chronic fatigue, to exercise responsibility for -

    Comprehensive highly specialist assessment and formulation of
    patient's presenting problems

    Implementing a range of psychological interventions with
    individuals, couples and families, continually adjusting and refining
    psychological formulations drawing on different explanatory models and
    maintaining a number of provisional hypotheses

    Employing methods based upon evidence of treatment efficacy.

    Discharge or referral on from the service

    6. To communicate in a skilled and sensitive manner, information
    concerning the assessment, formulation and treatment plans to patients and
    other health professionals and to monitor progress during the course of uni-
    and multi- disciplinary care.

    7. Where patients present with multiple needs e.g. patients with severe
    mental health problems and persistent pain, to liaise with other local
    specialist services eg mental health services to enable effective case
    management.

    8. To undertake risk assessment with distressed clients and to provide
    advice to team members and other health professionals on psychological
    aspects of risk assessment and risk management

    9. To take an active role in the development of information and
    educational materials for people with chronic fatigue.

    10. To work with other members of the team to raise awareness of CFS
    services and the efficacy of a self management approach to chronic fatigue
    amongst Trust staff and other local services including GPs."
  2. Dolphin

    Dolphin Senior Member

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    Sounds good.

    I read a 3-page report of a talk Dr. Bansal gave on May 9 2009 at Burgess Hill and I was generally happy with him and what he said.
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Mark's response to Dr Shepherd

    Mark,

    I've been pretty tied up this week and have only just spotted your response to Dr Shepherd, this evening. Thank you for including the points above and for the other issues you have raised - I shall be most interested to see any further response you receive.

    BTW I've received an early response from the FOI office of UCL, today, and I will update tomorrow.

    Suzy
  4. Robin

    Robin Guest

    Wow, I wouldn't be able to find a shovel big enough for that pile of bull manure!

    The most offensive part is this:

    As a result of a successful bid for government funding, an exciting
    opportunity now exists for a newly or recently qualified Clinical
    Psychologist to join an innovative new service for people with Chronic
    Fatigue Syndrome.


    If only the UK taxpayers knew how much they're being robbed! Fraud!

    They claim to help "where possible" return people to work. That would be a pretty objective measurement of treatment success. I wonder how many people actually started working after going through one of their clinics?
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Leaving aside the Bansal issue, for a moment:

    It isn't clear to me what the current funding situation is for this proposed Kerr/Bansal collaboration announced, yesterday, by Invest in ME and ME Solutions (the latter keep a low profile - so I can't tell you anything about them, apart from direct you to their website).

    Have part funds already been secured and Invest in ME and ME Solutions are looking to make up the difference, and if so what is the shortfall?

    Or are these two organisations hoping to raise total funding required and if so what is the total amount required? How realistic is this aim?

    Has some funding already been awarded by one or both of these organisations, or by other funding sources, and if so how much and from what source?

    Why has none of this been clarified for those considering making donations?
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Robin

    Dr Bansal was part of the "Collaborative Clinical Study Group" in 2006:

    ------------------


    Source: Journal of Clinical Pathology Preprint

    Date: August 29, 2006
    URL: http://jcp.bmjjournals.com/cgi/content/abstract/jcp.2006.042374v1
    Ref: You can respond to this article at:
    http://jcp.bmjjournals.com/cgi/eletter-submit/jcp.2006.042374v1


    Current research priorities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME):
    disease mechanisms, a diagnostic test and specific treatments


    --------------------------------------------------------------------------

    JR Kerr,(1) P Christian,(2) A Hodgetts,(2) PR Langford,(2) LD Devanur,(1)
    R Petty,(1) B Burke,(1) LI Sinclair,(3) SCM Richards,(4) J Montgomery,(4)
    C McDermott,(4) TJ Harrison,(5) P Kellam,(6) DJ Nutt,(3) ST Holgate,(7) and
    the Collaborative Clinical Study Group.*

    1 Dept of Cellular & Molecular Medicine, St George's University of London;
    2 Dept of Paediatric Infectious Diseases, Imperial College London;
    3 Psychopharmacology Unit, University of Bristol;
    4 Dorset CFS Service, Poole Hospital, Dorset; Depts of
    5 Medicine and
    6 Infection, University College London;
    7 MRC Dept of Immunopharmacology, University of Southampton.

    * Collaborative Clinical Study Group
    D Honeybourne (Birmingham Heartlands Hospital), AP Smith (Cardiff University),
    M Thomas (Cardiff University), JG Ayres (University of Aberdeen), J Main
    (Imperial College London), T Daymond (University of Sunderland), A Bansal
    (St Helier Hospital, Surrey), BK Puri (Hammersmith Hospital), R Morgan
    (Imperial College London), RC Peveler (University of Southampton), JS Axford
    (St George's University of London), W Weir (Harley Street, London),
    D Enlander (New York CFS Association, Fifth Avenue, New York, NY), JK Chia
    (ID Med, Torrance, CA).
    Correspondence to: Dr Jonathan R Kerr, Sir Joseph Hotung Senior Lecturer in
    Inflammation, Dept of Cellular & Molecular Medicine, St George's University
    of London, Cranmer Terrace, London SW17 0RE, United Kingdom. Tel: 0208 725
    5276. Fax: 0208 725 5260. Email: jkerr@sgul.ac.uk.


    Abstract

    etc.

    --------------------------------------

    This is the Liverpool advert for a vacancy (I had highlighted both these vacancies on Co-Cure in the same posting, in February 2005, together with an article by Prof Tony Pinching, who has announced, recently, that he will be stepping down as Medical Adviser to Action for M.E.).

    13 February 2005

    Job vacancy 1:

    Employer: Royal Liverpool & Broadgreen University Hospitals NHS Trust

    Job title: Trainee Clinical Fatigue Therapist

    Chronic Fatigue Treatment Service
    Ref: 2570

    For informal enquiries please contact Pauline Powell or Fran Morgan, Senior
    Therapists www.rlbuht.nhs.uk.

    Closing date: 31st January 2005

    "The service has a multi-disciplinary team (MDT) that provides a unique
    treatment which involves explanation of symptoms, self-managed graded
    exercise, psychological support and motivation to patients with chronic
    fatigue syndrome. Improvements in health are achieved and results are
    monitored."

    "WORKING ENVIRONMENT

    1. Psychological treatment involves delivering a highly complex
    understanding of the psychological, physiological and social factors of CFS
    to severely disabled, fatigued patients and relatives, in order to change
    perpetuating illness behaviour and motivate patients to perform a
    self-managed activity programme, regulate disturbed sleep patterns and
    modify predisposing personality style.

    2. Clients with CFS, because of their chronically fatigued state,
    experience barriers to understanding. For some clients there can be
    significant barriers to accepting the changes needed in behaviour, which
    have to be overcome in therapy in order to facilitate a successful outcome.

    3. The post holder can be required to work frequently in an emotive
    and demanding environment with exposure to distressing problems and must
    maintain a high degree of professionalism at all times.

    4. Requires intense concentration and prolonged periods of sitting
    whilst assessing and providing psychological therapy for clients with CFS.
    Individual treatment sessions are up to 2 hours long, twice weekly group
    sessions are 3 hours in length, and frequent counselling phone call sessions
    are up to one hour long.

    5. As some clients with CFS may be resistant to working in a
    psychological framework there may be exposure to verbal aggression.


    6. Clients are frequently seen on a one to one basis without other
    staff immediately nearby."

    ---------------------------

    I had published the following on Co-Cure a week or two later, in Feb 2005:


    It is bitterly ironic that Kerr is collaborating in gene and XMRV studies using blood samples taken from the Dorset CFS Service (formerly known as the "Wareham Clinic") and from Epsom and St Helier NHS Trust CFS Service about which there have been such concerns.

    From February 2005, via Co-Cure:

    New CFS services are currently being rolled out across the country and clinicians are in the process of being recruited to staff these clinics or expand existing services. Over the past few weeks we've seen a number of advertisements for vacancies throughout the UK.

    Two chilling and extremely disturbing examples which have already been circulated are for the "Trainee Clinical Fatigue Therapist", Chronic Fatigue Treatment Service, Royal Liverpool & Broadgreen University Hospitals NHS Trust and for the "Highly Specialist Clinical Psychologist in Chronic Fatigue Syndrome Management", Chronic Fatigue Syndrome Service, Sutton Hospital, Epsom and St Helier NHS Trust

    [see [CO-CURE] ACT: An interview with Prof. Tony Pinching [1] 13.02.05]
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0502b&L=co-cure&F=&S=&P=7670

    These advertisements had already been drawn to the attention of the MEA who have since raised their concerns with the ME Alliance. Chris Clark, current convener for the ME Alliance, has taken up this issue with the Department of Health. Professor Pinching has been informed. Tony Wright (Chair, APPG for ME), the Countess of Mar and others have been alerted to both the Liverpool, and the Epsom and St Helier advertisements and to the ME community's considerable concerns.

    The job descriptions and person specifications for these vacancies have confirmed what many of us in the ME community suspected all along - that new service provision for CFS/ME will in many instances be delivered by psychologists, psychotherapists and nursing staff with psychotherapy and counselling backgrounds, delivering psychological treatments and psychological therapies to clients who, in the words of those responsible for drawing up the job descriptions, "...may be resistant to working in a psychological framework" and who "...may have difficulty accepting and be hostile to the rationale for adopting a cognitive-behavioural approach to the management of their fatigue" and who "have complex psychological problems".

    Everyone agrees that the content of these adverts is shocking and that the ramifications for those referred to these clinics for the treatment of their illness, disturbing. Action has to be taken.

    So what action have the charities taken?

    Dr Charles Shepherd, MEA, has stated:

    "I...find the content and tone to be deeply offensive - as does the ME Association...an immediate representation was then made on behalf of all members of the ME Alliance to the Department of Health."

    Maria Shortis, AfME Project Manager for NHS Patient and Public Involvement, has stated:

    "...At Action for ME we are all concerned about these job descriptions, they do not augur well for a patient centred service and will have further undermined the patient-doctor relationship. Action for ME is determined to build patient centred services which restore trust between clinicians and patients and provide realistic services which above all improve patient experience."


    Chris Clarke, CEO, AfME and current convener for the ME Alliance, has stated:

    "...Accordingly on behalf of the Alliance I immediately drew this to the attention of the Programme Director, whose response to our concerns was prompt and supportive...As a result of the issues we raised we know that further discussions are taking place and we await the outcome."


    Patricia Noons, Programme Director CFS/ME Service Investment, has responded:

    "...this does not reflect the programme or the model of care set out in the Planning and Funding Document the report of the Independent Working Group to CMO or the scope planned for the NICE guideline."


    So what happens now?

    The Service Manager for the Chronic Fatigue Syndrome Service, Epsom and St Helier NHS Trust is Dr Amolak Bansal. It was Epsom and St Helier NHS Trust CFS Service which was selected for Stephen Ladyman's recent launch of the Exemplar Document for children and young people - "Megan's Journey". The Epsom CFS Service delivers across the full age range - so that's children and young people, too.

    The contact and senior clinical therapist for the Liverpool vacancy is Pauline Powell. Pauline Powell is also a member of the research team for the MRC funded FINE trials. The CFS/ME Clinical Network Coordinator is Dr Fred Nye. Dr Nye is also a member of the NICE CFS/ME Guideline Development Group. Dr Nye was also part of the research team, along with Powell, P and Bentall, R who published the 2001 paper: Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome - a paper heavily criticised for its methodology.

    Richard Bentall is on the FINE research team, too. It's a small world, isn't it?

    Dr Nye has responded, so far, unofficially, distancing himself from these advertisements which he says he had not had sight of before they were released.

    We are given to understand that Chris Clark is about to release a further statement which is to be a vehicle for an official response from Dr Nye. Why is this statement not coming directly from Dr Nye on behalf of Liverpool NHS Trust or on behalf of the Department of Health?

    At this very moment Mr Clark is chewing the end of his pencil, producing a statement which will represent the biggest damage limitation exercise of his career to date as part of a very tricky public relations exercise on behalf of Dr Nye, Liverpool NHS Trust, Prof. Pinching and the Department of Health and for AfME, itself.

    It will almost certainly incorporate an apology from Dr Nye on behalf of Liverpool NHS Trust for the "offensive tone and content" of their advertisement for the Trainee Clinical Fatigue Therapist. There are likely to be further assurances on behalf of the Alliance and possibly a further statement from the Programme Director, herself.

    Perhaps Dr Nye also intends to attempt a justification of his NHS Trust's rationale by offering some kind of explanation for both the content and the underlying tone of the advertisement.

    Perhaps he will include some assurances that CFS/ME sufferers in his PCT do not really need to have any concerns about the type of service being rolled out in his area or the modus operandi of those employed to staff its clinics, because the wording of the adverts isn't really reflective of the actual service being delivered by Pauline Powell and her colleagues; that in reality, everything is going to be ticketty boo; that the clinic has nothing to do with the use of CBT in order to modify "perpetuating illness behaviour" and "predisposing personality styles" in potentially "aggressive" patients who may be "resistant to working in a psychological framework" and everything to do with Pinching's vision of CBT - a rosy vista where thoroughly trained and understanding clinicians and patients sit down together as equal partners and work out ways of helping the sufferer to cope and adjust to being ill, in an atmosphere of respect and acceptance for the physical nature of ME/CFS; that somewhere along the line, there has been some sort of mistake...and that we shouldn't take all this too literally...

    Could any "explanation" from Dr Nye be considered acceptable? No, of course not, because it is patently obvious what the mind set of Pauline Powell's clinic is and that what is required are not "apologies" or "explanations" but a radical shift in attitude, and nothing less than a full investigation into the model of care which has been adopted for this service and is in the process of being implemented - but not just in this clinic and in Epsom and St Helier, but throughout the rest of the country.

    And in the meantime no referrals should be made to any of these services and sufferers should boycott these clinics by refusing all referrals, themselves.

    Surely even Prof Pinching can see the stark reality?

    Can we expect the ME Alliance to properly represent our concerns and lobby for appropriate action to be taken?

    Unlikely.

    The current convenership of the Alliance is still held by Chris Clark of AfME. Prof Pinching, himself a Clinical Champion, is not only AfME's Medical Advisor but Chair of the Investment Steering Group.

    Chris Clark is now so firmly tucked up in the big D o H bed that he has left himself little room for manoeuvre. So we can forget about AfME since once it has allow itself to be used as a vehicle for delivering these "apologies" and "explanations" it is likely that this will be the last we will hear about this issue - withdrawn adverts will be "sanitised" and reissued, staff recruitment will be recommenced and the planned model of care will simply continue as before...

    And what of the MEA? It was Dr Shepherd who first raised this issue with the Alliance last week. Having placed it in the hands of the Alliance, will the MEA now duck behind the parapets and sit back and watch while this issue disappears into the ether or can we expect to see an aggressive campaign independent of any AfME driven sweeping under the carpet of what must undoubtedly be being seen by Pinching and the D of H as a most unfortunate PR problem.

    If the charities who claim to represent us were doing their job properly they would pick up this issue and run with it - will the MEA run with it? Will they use the media to highlight their concerns? Will they be calling for a full inquiry? Will they be advising their members not to agree to referrals in the meantime?

    Or will they hide behind the Alliance?

    I await Chris Clark's next statement and the MEA's response to it with interest.

    Suzy Chapman (February 2005)

    ----------------
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    M.E. Solutions

    http://www.mesolutions.org.uk/who-we-are/

    M.E. Solutions

    Chief Scientific Advisor - Dr Amalok Bansal (who is collaborating in this project/proposed project with Kerr)

    Patron: Vivienne Parry


    Parry is the Administrator of the funding arm of GUS.

    GUS funded the PRIME Project - a waste of 320,000 if ever there was one.

    Parry has a very low opinion of ME activism - according to Parry we are the reason why researchers do not want to get involved.

    (But it doesn't stop Wessely et al - does it?)

    Parry has not been a friend to the ME community and I am disturbed to see that ME Solutions has her Patronage.
  8. Marco

    Marco Old blackguard

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    Near Cognac, France
    Further correspondence with Dr Shepherd, MEA

    Dr Shepherd has now responded to my and others' further questions. For my part I think he now deserves a bit of a break!


    My e-mail

    Dear Dr Shepherd

    Thank you for your response on the MEA's proposals for XMRV related research. I mentioned that I would circulate your response. As you can imagine there is a lot of speculation at the moment with everyone anxious for news. It was well received and I believe provided a degree of reassurance at this crucial time. I also mentioned that there might be some follow up questions or requests for further clarification.

    I have been asked to pass on the following queries if you would be so good to consider them.

    1. Will the MEA be considering XMRV research on :

    (a) the severely affected who are housebound and the most severely affected who are bed bound? It may be difficult to collect the blood, but little seems to be done on researching these groups;

    (b) children and young people? Very little seems to have been said about children in relation to XMRV and it is unclear if any of the proposed replication studies will include them.

    2. According to the summary published by you on behalf of the MEA, following the APPG on ME meeting on 2 December, you stated : It looks as though there may even be some early results from replication studies before the end of the year. Could you please elaborate on this?

    3. In XMRV and ME/CFS? What do we know so far? And what don't we know?
    (version 4) you state that It is worth noting that a significant proportion of people with Ramsay-described ME will not meet Fukuda criteria for CFS - so they are likely to be excluded from research currently taking place. Could you please elaborate on this exclusion?

    4. You have stated It would have been helpful if the (WPI) paper itself had carefully specified the selection criteria because I know that there are researchers taking this forward on the basis that CFS in the paper = CFS Fukuda.The Science online supplementary material pretty clearly outlines patient selection criteria (and the method) e.g.

    Banked samples were selected for this study from patients fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome (S1) and the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe disability [T]heir diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities. These included but were not limited to perturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assays), and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing

    While likely to be expensive, do you believe that cytokine, natural killer and RNase L screening will be part of the UK replication attempts? Only those research groups that select Canadian defined patients and screen for these immunological abnormalities will be able to refute the WPI findings.


    Generally speaking, my own view is that the MEA and other patient advocates should not be concerned about being amongst the first to replicate or refute the WPI findings. As you stated, virologists are almost racing to replicate/refute and money doesn't appear to be an issue. I feel the MEA should be concerned with contacting and educating virologists about the likely impact of the various diagnostic criteria on expected findings and monitoring the progress of any research studies in the light of the methodology adopted perhaps this is what you are currently doing? This would go a long way to qualifying the interpretation of any failures to replicate the WPI findings. It appears that a German team have already failed to find XMRV in their CFS cohort although there are suspicions about the assay techniques used, subject selection and even the institutional 'zeitgeist'. Similar problems to what we might expect with UK studies. The role I would see for the MEA at this stage is maintaining an oversight brief if you wish.

    Longer term, as someone so aptly put it, the ME position, vis a vis XMRV, is like the ugly sister being allowed to tag along to the ball. There may be a danger that virologists will be more inclined in the future to research XMRV's involvement in other illnesses such as autism or mantle cell lymphoma which are more easily diagnosed and less 'controversial', especially if early attempts to find XMRV in ME/CFS cohorts have been inconclusive. The MEA should, I believe, be aiming to fund gold standard research and this means using a patient group most likely to represent 'classic organic ME' in other words selected using the Canadian criteria, plus Fukada for comparability and to meet the requirements of the scientific journals. Hopefully also by then the testing methodologies with be refined and standardised. I take your point about the availability of patients but I'm sure a sufficient sample could be obtained by asking for volunteers and assessing them against the Canadian and Fukada criteria, even if this requires a call for additional funding.

    Best regards and Merry Xmas to all at the MEA.

    Mark


    Dr Shepherd's response

    Dear Mark
    *
    I receive a large number of emails each day and I have to do all this MEA work in my so-called spare time.
    *
    So I hope the rather brief comments below answer your various queries:
    *
    *
    Involvement of people with severe ME/CFS in XMRV research studies:* Yes, we obviously*want to include people at different time stages of the illness and with different degrees of severity.* This is a point that is made in the MEA position statement.* However, there are real practical difficulties here*in recruitment if*researchers are going to be using samples from just one hospital based source.* If that source does not offer a domiciliary (ie home visiting service) or in-patient facility, then the number of severely affected patients in their cohort*is likely to be very low, or almost non existent. So I don't think we can be dogmatic about this in the first*phase replication studies.
    *
    Involvement of children and adolescents in XMRV research:**There are considerable ethical problems when it comes research involving children that involves any sort of invasive procedure (ie taking blood samples). That's partly why there are very few ME/CFS studies of this nature involving children and adolescents. So I think we*first need to reach a consensus*from the adult replication studies as to whether XMRV is playing a significant role in ME/CFS.* If it is, then research*involving children and adolescents would be justified and may well help in our understanding of how this virus is transmitted.* At present, this sort of research proposal*is probably at least 6 months down the line - but only*if the replication studies*do turn out to*be reasonably consistent and positive.*
    *
    Publication of results:* My comment that we could see a replication study result from somewhere in the world sometime before the end of the year is an educated guess.* I have no firm knowledge of any planned publication dates but I do know that some of these research groups are working with a real sense of urgency.* I know that some negative XMRV results in a group of CFS patients from Germany have been reported on the internet but I'm not sure about the validity of this information.* There are also some interesting anecdotal reports of negative results being reported as well on the internet websites. If we don't get something before the end of 2010 I would be very surprised if nothing is then published by the end of January 2010.
    *
    Ramsay and Fukuda*Criteria: You will be*familiar with the 1994 Fukuda CFS research criteria*>>*essentially new onset chronic fatigue*plus 4 or more symptoms from their shopping*list.* So I won't repeat.
    *
    The Ramsay description of ME below*is taken from pages 30 - 31 of his book 'Myalgic encephalomyelitis and postviral fatigue states - The saga of Royal Free Disease' (published by the ME Association).*
    *
    The*four key 'Ramsay ME'*features are:
    *
    1* Effort induced muscle fatiguability with a prolonged recovery period - the 'sheet anchor' of the ME diagnosis. * NB: muscle pain is*not required*by Ramsay.
    *
    2* Circulatory impairment with facial pallor (the 'most striking finding'), cold extremities and hypersensitivity to climatic change.
    *
    3* Cerebral dysfunction affecting concentration and memory, word finding abilities, sleep rhythm, thermoregulation (sweating episodes in particular) and autonomic function (eg orthostatic tachycardia).
    *
    4* Variability and fluctuation of symptoms throughout the day.
    *
    PLUS:* No requirement for six months of symptoms before diagnosis can be made.
    *
    As you can see the two descriptions are not the same and while there are patients with Ramsay described ME who will meet with Fukuda research criteria for CFS there are others who do not.


    In my own case, I was diagnosed as having ME by Melvin but I do not meet Fukuda criteria for CFS*because I do not have the right number of Fukuda minor symptoms for this definition.* I do, however, have many of the Ramsay symptoms plus Ramsay type fatiguability..
    *
    I think Melvin's description of this illness (ME)*is still the best and it will be interesting to see if a group of Ramsay described ME patients also have XMRV.
    *
    But you won't be able to draw any firm conclusions about*Ramsay ME*using a cohort of *Fukuda CFS or Fukuda CFS plus Canadian Clinical Criteria patients.
    *
    In other words, Fukuda CFS + CCC does not necessarily = Ramsay ME.
    *
    Inclusion of cytokines, NK cell numbers/activity and antiviral pathway markers in entry criteria:* The simple answer here is possibly not but I need to check the extra data from WPI*to see how extensively these tests were used in the WPI cohort and whether the results were consistent.* None of these tests*form a*mandatory part of the CCC investigation list - so they may not all have been done in every case in the WPI cohort.* I just don't know at this point. As you are probably aware, antiviral/RNAse L immunoassay testing is not used in the UK because there are considerable doubts over its specificity/validity in ME/CFS - see the study that Professor John Gow did for the MEA (ref: Antiviral pathway activation in patients with chronic fatigue syndrome.* Clinical Infectious Diseases, 2001, 23, 2080 - 2081).* Another problem with cytokine assays is that cytokines have a very short half life and there is rapid decay during storage.* Abnormalities in NK cell function and number*certainly occur in ME, CFS, ME/CFS but the results are not that consistent*and*changes in NK number/function*won't differentiate between CFS and CCC.* Going back to cytokines - yes, there is growing evidence that cytokine dysfunction is also involved but (again) the results are not yet sufficiently consistent to draw any firm conclusions about which specific cytokine abnormalities are of possible diagnostic or pathological significance.* Doing all these tests would add to the*costs quite significantly and would make it even more difficult for some sources of patient material if these tests were mandatory.
    *
    Hope this makes some sense......
    *
    Incidentally, I wish people would read what I actually wrote about the Canadian Clinical Guidelines when their adoption by the MEA was being debated and voted on by the MEA membership back in 2005.* I made it very clear at the time that I believed they ware a "very useful contribution" but were unlikely to be used by UK doctors without a number of modifications - which I outlined in some detail in the article in ME Essential magazine in an attempt to take this forward.. I voted in favour of the MEA adopting the*CCC*in the membership ballot and wrote to the authors*with some suggestions as to how they could be made more acceptable to the UK medical profession* Since then the MEA has adopted and distributed the CCC along without own more general guidelines on research, clinical assessment and management.* However, until some of these issues (eg the decision to recommend methylphenidate as a treatment option for fatigue - 3b in symptom management) are addressed in relation to a UK audience, I do not believe that*there is*any realistic chance of them being adopted as clinical guidance within the NHS.
    *
    *
    Regards and Best Wishes for Christmas and the New Year!
    *
    Charles Shepherd



    *
  9. Solon

    Solon Guest

    Cold taste of tears, dont worry dude your story is just something to remind me of what i have been through from my medical university and professors and doctors, for 4 and a half years i was in bed and the rest i was lingering to stay alive under their relentlessly sick full of sarcasm and wrong instructions.

    At one point i was left alone from everyone even most member of my family, every single doctor that i new stopped talking to me, all my medical colleagues because they thought i went mad trying to reverse the whole medical beliefs that there is only ONE virus to cause immune deficiency, and CFS is not of viral root and i should be in a psych ward asap.

    Unfortunately for all of them i have gotten much better and they will be soon hearing news from my side, just waiting to get as better as possible to show up in the 8am news one day and start talking with explicit detail about the medical system and the crooks i have met throughout my long lasting ilness. Offcourse at this point i already have the backing up of some serious researchers and scientists and a whole loads of tests and proofs and it will be very interesting to watch this. Like a soap opera. Me against the nations medical system.

    Look at this dork for example

    Can this dude here really be a doctor???
    And what is this mickel/nickel therapy about??

    Talking the viruses to run away from your body??
    http://www.mickeltherapy.com/

    check the video in the end you will laugh. He really believes that the virus is not the reason. So i wasnt infected and i didnt infect noone all those years. Its just my wicked imagination. So wicked that i have seen half of my family and around 5-6 girlfriends (use of condom or without it doesnt matter) go into a weird but exact same sickness as me just 2 months after mine started. I got infected through saliva by the way, and this is how i got most of people around me infected too.

    So too bad, because some people dont believe that this cannot happen.
    One of my professors told me i am completely mad, viruses like that hit and run you never find them in your body after damaging you. So HOW ON EARTH DID SO MANY PEOPLE AROUND ME GET THE SAME ILNESS??? HOW DID I GET IT??

    WHAT THE HECK ARE THEY TALKING ABOUT ??

    2 Weeks ago i went to a gastroenterologist/homeopath thinking that she would know of some other form of treating my bloating intestines without use of spasmolytics and antibiotics and the only thing she gave me is a homeopathic regimen to treat my claimingly state of fear of being ill and transmitting a potentially imaginable disease. Too bad i didnt have my ex girlfriend with me who spends most of her time in bed to prove it to her. She thought exactly the same like most doctors that ther is no virus, that its all in our minds, and with the help of arsenicum (a poison in ultra diluted form) this fear will go away. Wow..... And those people have studied in serious medical institutions in the UK.

    These people have really studied medicine???

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