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MRC Research workshop: Note and presentations published

Discussion in 'General ME/CFS News' started by Dx Revision Watch, May 14, 2010.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    14 May 2010

    I have been advised, today, by the MRC's Corporate Information and Policy
    Officer, that the note and presentations relating to the November MRC
    CFS/ME Research workshop are now available on the MRC's website.

    The link for the web page is:


    The note can be found at:


    As previously agreed with the MRC, they will let me know once the note of
    the expert group meeting held on 1 March 2010 is also published on the MRC


    List of participants of the MRC CFS/ME Research Workshop

    Note of the MRC CFS/ME Research Workshop 19-20 November 2009

    (including copy of the presentations from the meeting at annex 1)

    MRC CFS/ME Research Workshop
    Issued:14 May 2010Primary audience:General publicDocument Summary

    19 and 20 November 2009, Heythrop Park Hotel, Oxfordshire process and timetable.


    (3MB PDF) Includes Presentation Slides

    (Too large to upload here, so please grab from site. I may convert to text at some point in the future)

    Papers circulated prior to the meeting:


    CFS/ME Literature review Jan 2004 June 2009
    Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9

    Suzy Chapman
  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Text Note MRC CFS/ME Research Workshop

    MRC CFS/ME Research Workshop

    19th and 20th November 2009

    Heythrop Park Hotel, Oxfordshire


    1. Day 1 - Welcome & introduction

    1.1 Professor Holgate welcomed the participants to the workshop and introduced the format for the two days.

    1.2 An overview was provided of the MRC CFS/ME Expert Group and its Terms of Reference. The aims of the workshop were then detailed as follows:

    Identifying the underlying causes and mechanisms of CFS/ME:

    o Clinical phenotypes

    o Novel technologies and methodologies to help identify sub-phenotypes

    o Molecular and cellular mechanisms of pathogenesis​

    Consensus of priority areas.

    Encouraging new researchers into the field.

    Areas proposed for consideration during the workshop included:

    o capitalising on current issues and UK scientific strengths including national resources e.g. patient cohorts

    o new technologies and technological platforms

    o partnership models

    o other issues​

    1.3 Professor Holgate referred to the recent interest in the publication of research linking the retrovirus XMRV to CFS/ME, before going on to summarise the key challenges in the field:

    A large clinical need without sufficient underpinning research.

    Low research capacity; need to encourage a multi-disciplinary approach.

    Grant applications that did not meet current competitive standards for funding.

    Absence of a clear pathogenetic mechanism(s) meant it was difficult to develop therapies targeted towards specific biological pathways. As a result current therapies tended to be directed towards symptom support rather than prevention or modifying/halting progress of the condition.

    The need to consider both physiological and psychological mechanisms in developing therapeutic approaches.

    Page 2

    The difficulties inherent in defining phenotype and sub-phenotypes for a complex condition without good knowledge on underlying mechanisms.

    Knowing how best to incorporate new science and technological platforms.

    1.4 Professor Holgate advocated a more collaborative approach to move the field forward.

    A recent example of where such an approach had proved successful in increasing research capacity and impact was in respiratory research.

    2. Presentations

    (Full slide sets for each presentation are available at Annex 1)

    2.1 Dr Esther Crawley provided an overview on the epidemiology of CFS/ME and the current research on phenotyping. The role of the British Association of CFS/ME (BACME) and the current specialist services available for patients were explained. The key points raised were as follows:

    Definitions of CFS/ME were important when investigating prevalence of the disease.

    In adults there were at least 3-6 different phenotypes identified to date and there were currently 3 paediatric phenotypes, suggesting the possibility of a stratified or targeted approach to treatment.

    CFS/ME was considered to be a heritable condition, and several latent factors and risk factors had been identified. Further gene/environment interaction studies were needed to understand the mechanisms at play in disease progression.

    BACME in 2009 the 13 clinical service centres funded by Department of Health in 2004 were merged with the CFS/ME network. It was estimated that there would be 7,000-8,000 new patients/year assessed by the clinical teams.

    There were currently 30 teams contributing to the CFS/ME National Outcomes Database. Assessment data for more than 3,500 patients (adults and children) since summer 2009 had been collated. It was anticipated that this number would increase to 5,000 patients per year.

    2.2 Professor Julia Newton presented an overview of the current research into the role of autonomic dysfunction in CFS/ME and briefly explained the research from her laboratory. She discussed the possible upstream and downstream mechanisms of autonomic dysfunction, such as those relating to control of blood pressure and heart rate, as well as treatment options. The key points raised were as follows:

    With regard to autonomic dysfunction in CFS/ME, there were currently problems regarding diagnosis of both CFS/ME itself as well as with the diagnosis of autonomic dysfunction. Further issues remained concerning the reproducibility, insensitivity of detection equipment and data interpretation.

    New assessment tools with increased sensitivity were progressively being made available.

    Page 3

    Studies have shown that 50% of CFS/ME patients have neural-mediated hypotension.

    There were overlaps between hypotension in CFS/ME and other diseases e.g. cirrhosis and rheumatoid arthritis.

    A new treatment for patients with hypotension involving repeated daily tilt training was described. 2.3 Professor Jim Horne gave an overview of research into sleep disorders and the role of sleep dysfunction in CFS/ME. The key points raised were as follows:

    Some sleep disorders (eg apnoea/hypopnoea, restless leg syndrome, nocturnal myoclonus) can be manifested as CFS/ME, and it was important to screen for these.

    CFS/ME can produce sleep problems that can rebound back onto CFS/ME. For example, a disruption of the body clock (circadian rhythm), leading to sleeping excessively at the wrong time of day, to cause post-sleep inertia (rather like jet-lag) with symptoms similar to/further aggravating CFS/ME.

    Stabilisation of the circadian rhythm can be helped by: 1) remaining under daylight/ fairly bright indoor light throughout daytime hours, and 2) using melatonin about 2h before bed-time (and avoiding bright light at night).

    Nevertheless, some patients with fairly normal circadian rhythms do take too many naps in the day, thus reducing sleep need at night and causing disrupted, unrefreshing night-time sleep. 2.4 Professor Maria Fitzgerald provided a comprehensive overview of the complex mechanisms and processes involved in pain. The role of pain in CFS/ME was also discussed. She highlighted the importance of pinpointing when pain became chronic. The key points raised were as follows:

    The purpose of pain was primarily defensive and a warning mechanism. However this mechanism could become maladaptive.

    Pain processing occurred at multiple sites. Furthermore, pain mechanisms were complex, combining sensory, motor, autonomic and affective components which could also lead to altered brain function resulting in, for example, anxiety and insomnia. These changes were dependent on individual differences, age, gender and culture.

    It was unclear whether pain in CFS/ME comprised either of peripheral components, altered central nervous system (CNS) processing and altered endogenous factors or a combination of these. In other conditions such as fibromyalgia, both altered CNS processing and altered endogenous factors were a feature of pain. There was also evidence of altered cortical pain processing in the brain.

    Potential causes of pain in CFS/ME may include an increased limbic system involvement, decreased endogenous descending control, enhanced temporal summation, nociceptor sensitisation, genetic determinants and early life experience.

    Page 4

    Improved animal models of pain in CFS/ME were needed as a basis for research into underlying mechanisms, as were improved ways of defining and quantifying fatigue.

    2.5 Professor Gijs Bleijenberg presented an overview of current research in clinical psychology in CFS/ME and outlined possible future directions in this area. The key points raised were as follows:

    The aetiology of CFS/ME could be divided into multi-factorial predisposing, precipitating and maintaining factors.

    Predisposing factors included neuroendocrine dysfunction; gender; psychiatric illness; high physical activity in adulthood; low physical activity in childhood.

    Precipitating factors included infectious triggers; fatigue; pain; physical inactivity.

    Less was known about perpetuating factors and the key question was how and when did certain factors become perpetuating.

    Current treatments were aimed at symptom management and included cognitive behavioural therapy and graded exercise therapy.

    Neurobiological changes were reported in CFS/ME e.g. changes in patterns of cerebral activity and decreased grey matter volume. However, it was not yet known whether these changes were as a result of the condition or whether they were central to the disease process.

    Possible future directions for research: o Large population based studies to increase insight in the development of CFS/ME.

    o Smaller cohort studies of groups at high risk for developing CFS/ME with an emphasis on the development of the maintaining factors.

    o Research and mediation analyses of treatment studies; experimental studies to discover mechanisms.

    o Studies investigating neurobiological or physiological markers of CFS/ME in relation to treatment effect.

    o Early detection of CFS/ME by physicians and promoting healthcare seeking by patients.​

    2.6 Professor Phil Cowen provided a summary of imaging techniques and studies in CFS/ME and other disorders. The key points raised were as follows:

    Technologies such as PET/SPECT, ligand PET, MRI, MR Spectroscopy and fMRI could be useful tools in helping to understand CFS/ME pathophysiology.

    In some respects, imaging studies of CFS/ME patients have shown similar findings to those using subjects with depression. For example:

    o Structural morphometry studies have shown reduced grey matter volume.​

    Page 5

    o Decreased binding of brain 5-HT1A receptors using PET. o Increased neural activation during tasks of working memory. Specifically in CFS/ME patients proton MRS detected an increase in ventricular lactate, which had been postulated as a potential biomarker for CFS/ME, perhaps representing evidence of mitochondrial dysfunction.​

    Currently there was an overall lack of understanding of neural correlates of central fatigue in relation to functional brain imaging.

    The current evidence base in the field was unreliable due to the small patient numbers involved and the lack of consistency in experimental design. Increased sample sizes were needed coupled to more robust methodological approaches.

    2.7 Professor Chris Ponting discussed new technologies in relation to genetic studies and their potential for use in CFS/ME research. The key points raised were as follows:

    Susceptibility: were viral or other environmental triggers impacting on a vulnerable host? Further study of gene/environmental interactions was needed.

    For successful genome wide association studies (GWAS) large sample numbers from well phenotyped patients were needed.

    It was possible to identify gene variants for low-moderate effects, which may be an issue for CFS/ME. For example a GWAS on height found that 40 genes account for only 5% of heritability.

    It was important to discover biological pathways implicated by genetic studies, as opposed to single abnormalities as these might prove to be more informative.

    Most complex disease associations appear in non-coding regions of the human genome whose mechanisms mostly remain enigmatic.

    There were currently limitations in analysis, storage and interpretation of the large data sets that will be generated in genomics and genetics in the next 5 years.

    2.8 Professor Anthony Pinching gave an overview of the possible role of immunity and infection triggers in CFS/ME. The key points raised were as follows:

    Whilst chronic infection has been investigated for many years as a possible pathogenetic mechanism, the balance of evidence now tends to favour persistent immune activation or dysregulation, triggered by infection or other events that have similar impact.

    Patient histories indicate the common triggering role of a wide range of infections, and also provide clues to altered immune function in association with ongoing disease.

    Altered immune factors, e.g. decreased natural killer cell function, Th1-Th2 cell imbalance, elevation of both pro and anti-inflammatory cytokines have been associated in CFS/ME, and may be further elevated two days after exercise or activity.

    Page 6

    The relationships between predisposing and perpetuating factors in these changes have yet to be established, but prior genetic and environmental factors are both likely to influence immune responses to infections.

    The recent XMRV retrovirus study had produced interesting results. However the involvement of XMRV remained unproven and the study would need to be replicated using fresh biological samples, different methodologies, other cohorts and disease controls. It would be premature to use tests for this agent in diagnosis, or to initiate treatment studies, until such replication had been achieved.

    2.9 Professor Paul Moss discussed the possible role of virology in CFS/ME and presented a review of the current research in this area. The key points raised were as follows:

    Many studies have shown that infection is a strong candidate for triggering CFS/ME.

    Chronic infection was often linked to mood changes. CFS/ME had been associated with multiple viruses e.g. herpes viruses (CMV, EBV, HHV-6, HHV-7) as well as parvoviruses, enteroviruses and retroviruses such as XMRV.

    An imbalance between memory and nave circulating and lymph node T cells has been shown in some studies.

    Small studies had been undertaken to investigate possible novel therapeutic interventions using antiviral approaches, e.g. acyclovir, monoclonal antibodies.

    A model was proposed by which a chronic response to infection might lead to fatigue and lack of exercise which could potentially escalate to a self-reinforcing cycle.

    2.9 During the open session, the recent findings implicating a role for the XMRV retrovirus in CFS/ME were discussed. Attendees agreed that it would be important that the XMRV findings were replicated before treatment options could be considered, as well as extending the study to other CFS/ME patient groups in other countries. A consensus should be reached regarding the methodologies to be utilised between different research laboratories while research should be undertaken in well characterised cohorts. Studies in patients that have been recently diagnosed with CFS/ME should also be considered in order to minimise the number of patients with co-morbidities which could produce confounding results.

    2.10 During the group discussion Sir Peter Spencer and Dr Charles Shepherd outlined a feasibility study for setting up CFS/ME post mortem and in vivo tissue banks which was being funded jointly by Action for ME and the ME Association. Sir Peter emphasised that the charities in this area were very small compared to other disease-related charities and therefore obtaining funding for large studies was challenging.

    2.11 Attendees highlighted that there were potentially many opportunities that could open up research into CFS/ME. For example, little was known about fatigue mechanisms and investigating fatigue in healthy individuals could provide useful clues in understanding the aetiology of CFS/ME.

    Page 7

    Since anxiety and depression comprised a large part of the symptoms of CFS/ME alongside other symptoms such as pain, the interaction between biological and psychological mechanisms should be explored, particularly as there was scope to investigate anxiety from the perspective of autonomic nervous dysfunction. Another cross-cutting area that could prove fruitful to explore was that of mitochondrial function and energy metabolism.

    2.12 In summing up the days discussions, Professor Holgate noted the many potential interesting avenues for research. Going forward, the right infrastructure needed to be in place, aided by the adoption of a collaborative approach.

    3. Day 2 - Working group discussions

    3.1 Participants were divided into three mixed groups for discussions at the beginning of the second day, before reporting back in a plenary session. Each group was asked to identify the research priorities and raise any other issues that they felt had not been addressed thus far during the workshop, as well as the following areas:

    o group 1 - current UK strengths and resources

    o group 2 - partnership models

    o group 3 - new technologies and technological platforms​

    3.2 The reports from each group highlighted the following points:

    Group 1 Research priorities and UK strengths

    UK Strengths

    Existing research cohorts of CFS/ME patients there were several well characterised cohorts already established including trial cohorts such as PACE.

    Birth cohorts (e.g. 1958 and ALSPAC cohorts which had genetic information) for hypothesis generation. Whilst these were less well characterised it would still be possible to generate results in research studies. CFS/ME National Outcomes Database.

    Strong research teams particularly in epidemiology, imaging, gene sequencing, health psychology and non-pharmacological intervention. This was further enhanced by a general willingness to work in multi-disciplinary teams.

    Research priorities

    To establish a large cohort with broad case definition identified early in primary care before CFS/ME became established e.g. first presentation following viral illness with fatigue and interference with normal activities. This could be followed up with more intensive phenotyping and obtaining biological samples (including samples for sequencing, metabonomics etc) to identify variables/predictors associated with developing confirmed CFS/ME.

    Page 8

    In addition to identifying priority groups for intervention studies this would also allow the exploration of the implications of different definitions/cut off points in defining established CFS/ME.

    To identify possible early win interventions for phase 2 and early phase 3 clinical trials - e.g. targeted use of cytokines; melatonin for those with sleep problems.

    To undertake genome-wide association studies (GWAS) to identify the genetic components of CFS/ME and possible new targets for intervention. This would be dependent on the availability of well characterised cohorts. To develop more comprehensive outcome measures.

    To encourage work across the different existing cohorts (including trial cohorts), e.g. for assessing predictive markers of disease and confirming hypotheses generated in other data sets.

    3.3 Group 2 Research priorities and partnership models

    Partnership models

    A co-ordinated, structured, strategic and collaborative research approach would be needed in moving the field forward.

    Exploring the use of other fatigue-related diseases (such as multiple sclerosis and cancer-related fatigue) as control models for CFS/ME, and utilising existing expertise from these areas in the CFS/ME field.

    Establishing a multi-disciplinary group involving not only scientists (e.g. immunologists, fatigue experts, neuroscientists, psychologists and psychiatrists, neurologists and geneticists) but also the clinical networks and health professionals.

    Pharmaceutical industry involvement would be beneficial, perhaps at a later stage. Research priorities Databases of patients with CFS/ME characterised according to agreed criteria. Phenotype identification could only progress if linked to good infrastructure with all groups using the same criteria. This could provide benefit not only in replication of studies but also of increasing n numbers. It was also essential to collect biological samples from early-stage disease which would have no or minimal confounding factors which occurred with long-term disease. Good clinical diagnosis and standardised measurements and assessments were essential to enable comparisons across data sets. Therefore a collaborative approach with researchers working closely with clinicians and other health professionals would be important.

    Patient reported outcomes and quality of life measures.

    The establishment of tissue banks with samples from well characterised patients and controls.

    Improved definition of fatigue and improved understanding of fatigue mechanisms.

    Page 9

    Virology and infection triggers there was potential for virology to be studied in CFS/ME as part of the complex disease pathogenesis. In addition to continued research in this area it would be important for the XMRV study to be replicated before pursuing this avenue of investigation through to clinical trials.

    3.4 Group 3 Research priorities and new technologies and technological platforms.

    New technologies/technological platforms

    Imaging technologies such as fMRI, EEG and MRS and pathological studies using tissue could be utilised for neuroanatomical studies and neurophysiological studies of fatigue.

    Better animal models were needed both of the whole disease and aspects of the disease physiology.

    Genetic studies (GWAS) needed to be nationally and internationally standardised using well phenotyped samples.

    Improved data collection tools were needed. Research priorities

    Identification of phenotype and phenotypic subgroups. This would require access by researchers to raw data (not prior filtered) for replication studies and different measurable entities for different studies. It would also be important to extend the minimum clinical data currently collected.

    Psycho-physical studies it was important to continue to undertake small and focussed pathophysiological studies investigating perception, behavioural and physiological response in patients.

    Establishment of longitudinal population-based studies including natural history cohorts which were well focussed and avoided selection bias. Data generated by these studies could be underpinned by co-ordinated tissue collections and repositories.

    Studies on neuro-immunological interactions.

    3.5 During the plenary discussion the following points were highlighted:

    It was agreed to be important not to stigmatise the condition, both in terms of treating and caring for those with CFS/ME, and for attracting researchers to the field. CFS/ME was a complex disease that comprised the interaction of different biological, physical and psychological mechanisms. The interactions between these different mechanistic pathways were important and further mechanistic studies needed to be undertaken. Pathways may differ between individual patients and therefore the characterisation of phenotype(s) was paramount. Phenotype characterisation would facilitate the identification of biomarkers. However, given the complexity of the disease and the many current unknowns, this objective was likely to be achieved

    Page 10

    only in the longer term. The objective for the shorter term should be to increase the current knowledge base of the pathogenesis.

    Clarification of the definition of CFS/ME was important. Without this it would be difficult to encourage new researchers from other fields to undertake research in this area.

    Successful collaborative approaches required each stakeholder to take ownership of a particular area.

    3.6 Professor Holgate briefly summarised the workshop outcomes which would be discussed by the CFS/ME Expert Group during the spring of 2010. The Group would prioritise the opportunities that were tractable for both the short and longer term and feed back the outcome to the community.

    Professor Holgate thanked all the participants for their valuable contributions and closed the meeting.

    For Presentation slides please refer to PDF

    or here on ME agenda site:
    MRC Research workshop: Note and presentations published:
    SamanthaJ and Esther12 like this.
  3. fingers

    fingers Senior Member

    SW Endland
    Thanks for signposting this Suzy.

    I need time to read and digest, but at first glance it is not encouraging for me.

    "UK strengths" are very weak

    Genral impression is that it's written by someone with little understanding. I don't understand:

    To establish a large cohort with broad case definition identified early in primary care before CFS/ME became established e.g. first presentation following viral illness with fatigue and interference with normal activities. This could be followed up with more intensive phenotyping and obtaining biological samples (including samples for sequencing, metabonomics etc) to identify variables/predictors associated with developing confirmed CFS/ME.

    This suggests that it generally takes time for ME to become established or diagnosed. I certainly concur with the latter, but not the former!!!

    Under partnership models, this bit caught my eye:

    Exploring the use of other fatigue-related diseases (such as multiple sclerosis and cancer-related fatigue) as control models for CFS/ME, and utilising existing expertise from these areas in the CFS/ME field.

    So it's a fatigue-realated disease, then? What a great way to make progress.

    And this:
    A model was proposed by which a chronic response to infection might lead to fatigue and lack of exercise which could potentially escalate to a self-reinforcing cycle.

    Can I volunteer to refute the above please?

    Seems to me that the whole thing could have been written 20 years ago. In that time we have moved from A to A.

    Sorry, late and tired, need to read it properly, but I thought your initiative deserved a response, Suzy.

    Thank you
    SamanthaJ likes this.
  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I've been chasing this document for months. The minutes of the March meeting aren't ready yet but the MRC's FOI Officer will alert me when these become available. It's often standard practice for committees to circulate minutes a few weeks before the next meeting for corrections, then send the corrected minutes out a couple of weeks before the next meeting takes place. But the minutes of the Expert panel meetings are in the public interest and the MRC ought to be trying to get them out faster than they have been since this panel first started meeting in December 2008.

    I've had FOIs in to the MRC ever since spring 08, when it was first announced that the MRC would be assembling a "multi-disciplinary" expert panel and that Prof Holgate would be chairing the panel, first for the committee's Terms of Reference, then for the names of panel members, then meeting minutes, then for information around the November workshop. The list of participants wasn't released until a few days after the workshop had taken place.

    Because the document needed formatting to publish on my site and to circulate on various platforms, I didn't have time, yesterday, to actually read it properly. But what I did skim does not exactly inspire confidence that anything very much is going to change.

    If you haven't obtained the PDF, either from my site or the MRC's site, there are a large number of slides - so don't miss these.

    For Presentation slides please refer to PDF on MRC site

    or here on ME agenda site:
    MRC Research workshop: Note and presentations published:
  5. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Thanks Suzy

    Without going through this in detail and picking holes in it, its all depressingly familiar.

    What is fascinating though is reading through the literature review paper (well skimming actually - its a pretty large document).

    I'm floored by :

    The sheer number of papers produced during the specified period (Jan 2004 - June 2009);

    The number of papers confirming biological pathology;

    The incredible number of papers examining personality types as pre-disposing or perpetuating factors; the proportion of these reporting no association; and the fact that they continue to commision these studies.

    Isn't that Einstein's definition of madness?

    I particularly liked the two Wessely and co papers that are listed one after the other that :

    In the first paper postulated that low cortisol caused ME/CFS and that CBT could raise cortisol levels;

    and in the second paper complained that those patients with the lowest cortisol levels were least responsive to CBT??
  6. Mithriel

    Mithriel Senior Member

    I can't bear to read it again to find the quotations (read it late last night) but what got me in particular was "the need to widen the definition" :eek:

    "we have a well characterised group available in the PACE trial patients" so like the Georgia patients we could have an endless stream of papers coming from them.

    SW spoke about genome + environment interaction again. My OH was reminded of Jonathan Kellerman's first novel where the psychiatrists kept diagnosing children with PPP (P... Poor Protoplasm)

    I had expected better. I did not recognise myself in their descriptions of the disease. I recently read on the forum a description of ME from 1958. I got quite excited at how closely it matched what is wrong with me.

  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Holgate on MRC in AYME's Link

    This is from the June 2009 edition.

    I have the full text and will post in the next day or so.


    In this issue of Link:

    A plea to the ME/CFS community from Professor Stephen Holgate of the MRC
    LINK Highlights

    The latest June issue of LINK includes:

    A plea to the ME/CFS community to come together from Medical Research Council (MRC) Strategy Board Member, Professor Stephen Holgate. He states that the hostile approach by some patient advocates has discouraged researchers from entering the field.


    Join Link and support AYME

    ME/CFS-professionals, parents, carers and families can join AYME as Link Associates and receive a concise bi-monthly news bulletin with information on research, education, national news and parent issues.

    The money raised by Link will enable AYME to continue to offer free membership to children and young people with ME/CFS wherever they live in the UK, whatever their circumstances.

    Link Associates receive a bi-monthly 4-page LINK news bulletin keeping them up-to-date with the latest news from the ME/CFS world and what AYME is doing for children and young people with ME/CFS.

    Link Associates have their own AYME Link message board where they can exchange news and views with other Link Associates.

    A contribution from the 20 subscription to Link will:

    •ensure that the AYME telephone helpline is manned to give information and support to parents and professionals regarding education, health and benefits
    •help to pay for free Cheers magazine for AYME members six times a year
    •help to fund the numerous free members services that are so vital to children and young people with ME/CFS
    •ensure that free membership to AYME can continue for all UK children and young people with ME/CFS
    •help us to help you
    AYME Link, 10 Vermont Place, Tongwell, Milton Keynes, MK
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Holgate: AYME LINK, Issue 32 June 2009

    AYME (Association of Young People with ME)

    LINK, Issue 32 June 2009

    A plea to the ME/CFS community to come together

    The CFS/ME community must come together or risk fragmented research, a lack of national resources and little progress.

    The warning was made by the Medical Research Council (MRC) Strategy Board Member, Professor Stephen Holgate, at a recent two-day conference attended by 150 of the UK's top CFS/ME experts. He added that the hostile approach by some patient advocates has discouraged researchers from entering the field.

    Prof Holgate pointed out that the divisions currently in the CFS/ME field are not dissimilar to those affecting the respiratory community five years ago. However, following a determined effort to move forward as one voice, respiratory research has made huge progress.

    Prof Holgate said CFS/ME could have more funding for research, more researchers interested in the field and an increased awareness if there was a national joined-up collaborative approach.

    "The most important driver will be a national joined-up collaborative research approach involving patients, NHS, charities and the research councils", said Prof Holgate.

    A two day workshop planned for autumn this year and organised by the MRS Interdisciplinary CFS/ME Advisory Group, which includes leading CFS/ME paediatrics, psychopharmacology, microbiology, immunology and patients organisation representatives, could be a major step towards positive progress for CFS/ME research.

    Prof Holgate told medical professionals at the CFS/ME Clinical and Research Network & Collaborative (CCRNC) Conference in Milton Keynes, that CFS/ME research needs several ingredients to move it forward. These include:

    . Increasing the quality of the science
    . Multidisciplinary approach
    . International collaboration
    . More young phD [sic] students coming into this field
    . A concentrated effort on sub-phenotyping in adults and children
    . Establishment of biobanks (e.g. brain, blood etc)
    . Establishment of disease prevalence (epidemiology) and burden
    . Continued support, communication and involvement of the unique clinical CFS/ME networks in the UK​
  9. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    They sh!t on our heads and they're upset we're not saying "thank you for the hats."

    We do show mad love and support for those doing actual science, like Dr. Mikovits. They just need to do bona fide science and then there will be no criticism, just support.
  10. Mithriel

    Mithriel Senior Member

    You are so right Justin. There have been many lovely doctors who have fought for us and helped us. If anything, we are so grateful for some kindness and we know what it costs the doctors who defend us, that we are more appreciative of the medical profession than those with other illnesses.

    You would think thta someone would stop one day and wonder why we are so against these people and the psychological research.

    But, of course, if anyone listened to us we would not have the problem in the first place.

  11. Cookie Monster

    Cookie Monster

    This is one section of the workshop minutes that jumped out at me. :confused:

    Seems to me like they always write up these minutes late just to cover their own behinds.

    So they also warned against many of the problems which subsequently materialised with the failed UK XMRV studies. They now look like such geniuses :rolleyes: :(
  12. oceanblue

    oceanblue Guest

    Thanks for posting this, Suzy, and above all thanks for chasing the MRC re notes and using FOI. I have to admit I've had problems chasing the MRC for stuff in the past but unlike you I just gave up in the end.

    Appraently there will be another meeting of the MRC expert group this month (May) to decide which research to pursue. We should then have a better idea of how useful this initiative is likely to be. I actually think this could be a very positive development, but time will tell.
  13. Dolphin

    Dolphin Senior Member

    Under 3.5., it says:

    This might be a useful quote.
    In the 2003 research strategy, it was said that understanding of the aetiology and pathophysiology wasn’t particularly important (based on the view that rehabilitation interventions could be the answer).

    It would have been good if there was a researcher from outside the UK who wasn’t from the CBT school – don’t think the psychologist (and “one trick pony” (CBT)) Gijs Bleijenberg was a good choice.
  14. Dolphin

    Dolphin Senior Member

    Prof. Moss last slide :) and :-(

    Going well until the end.

    Prof. Moss' last slide:

    (From the summary of this presentation)
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I have already replied to this post but it's not here so I must have clicked Preview and forgotten to Submit.

    I am nothing if not persistent, oceanblue.

    The Minutes for the March meeting are still being finalised and I don't expect they will be published until they have been circulated a week or two before the next meeting, at which they will be approved. If there is to be a May meeting it could be months before the Minutes for that meeting are published, unless the "CFS/ME Expert panel" plans to issue some kind of interim report or update.

    The "Expert panel" has now been meeting since December 2008 and the setting up of a panel which Prof Holgate would be chairing had been announced, informally, at a conference in Southampton, in February 2008.

    I had posted a timeline for the history of the panel in a thread on the ME Association's Facebook Wall, but I was unjustly removed from the MEA's Facebook group a few days ago, so none of my posts and comments now display and I had not thought to make a copy. (The Admin has been having a purge of those who ask awkward questions.)
  16. oceanblue

    oceanblue Guest

    Hi Suzy
    Only just spotted your reply - is there some way to get an auto email when anyone posts in certain threads?
    sorry to hear about the MEA facebook issue - their loss. And please do stay on the MRC's case.
  17. Dolphin

    Dolphin Senior Member

    (Off-topic) Subscribing to threads

    One can change one's settings so one gets an E-mail for messages in threads one has already replied to (called subscribing to that thread).

    Whether one does this or not, one can "subscribe" to any thread by using the "thread tools" drop-down menu just above (on right) of the top message in any thread/thread-page.
  18. Mark

    Mark Former CEO

    Sofa, UK
    PS Big thinks Suzy, great job as always.

    Pick up these important batons please people...questions-for-the-house thread?
  19. Mark

    Mark Former CEO

    Sofa, UK
    Dammit I think I just lost a big post moaning about how totally conservative and shit stuff like this is and how the document is the usual mixture of truth, half-truth and gibberish at every turn. And how patients, who are fed up waiting for decades, are making less conservative decisions about when it's time to self-diagnose and self-treat - in the absence of any treatment or medical research for so many years, seems not unreasonable...

    (that was the gist of it, however there may be some interesting science in there somewhere, although the content seems blurred to me)
  20. Mark

    Mark Former CEO

    Sofa, UK
    MRC CFS/ME Expert Group

    The Group is chaired by Professor Stephen Holgate, chair of the MRC Population and Systems Medicine Board and brings together leading experts in the CFS/ME, from associated fields that may be involved in the underlying mechanisms of CFS/ME and from the charity sector:

    • Professor Stephen Holgate - University of Southampton Chairman
    • Professor Jill Belch - University of Dundee
    • Dr Esther Crawley - University of Bristol
    • Professor Philip Cowen - University of Oxford
    • Professor Malcolm Jackson - University of Liverpool
    • Dr Jonathan Kerr - St Georges University of London
    • Professor Ian Kimber - University of Manchester
    • Professor Hugh Perry - University of Southampton
    • Dr Derek Pheby - National CFS/ME Observatory
    • Professor Anthony Pinching - Peninsula Medical School
    • Dr Charles Shepherd - ME Association
    • Sir Peter Spencer - Action for ME
    • Professor Peter White - Barts and the London School of Medicine and Dentistry

    For declarations of interests for members of the Expert Group please see Declarations of Interest.

    The link to declarations of interest returns:


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