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IiME - Clinical Autoimmunity Working Group

Discussion in 'General ME/CFS News' started by Daisymay, May 31, 2012.

  1. Daisymay

    Daisymay Senior Member

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    http://www.investinme.org/IIME Statement 2012-05-31.htm

    Invest in ME Statement
    Clinical Autoimmunity Working Group

    Building a future for research into ME

    To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with Bond University and University of East Anglia - to establish a Clinical Autoimmunity Working Group which met in London on 30-31st May 2012.
    The IiME proposal is based around using of existing and developed services and facilities to initiate an examination and research facility for ME - where proper diagnosis can be made and translational biomedical research can be established.





    MEDIA BRIEFING
    CLINICAL AUTOIMMUNITY WORKING GROUP


    MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME
    CLINICAL AUTOIMMUNITY WORKING GROUP MEETING
    Wednesday 30 – Thursday 31 May 2012
    LONDON
    UNITED KINGDOM

    WELCOME ADDRESS
    DAME BRIDGET OGILVIE, AC DBE FRS

    CONVENORS
    BOND UNIVERSITY
    Population Health and Neuroimmunology Research Unit
    Faculty of Health Sciences and Medicine
    Gold Coast Australia

    UNIVERSITY OF EAST ANGLIA
    Biomedical Research Centre
    Faculty of Science
    Norwich United Kingdom


    GRIFFITH UNIVERSITY
    School of Medical Science
    Griffith Health Institute
    Gold Coast Australia


    ALISON HUNTER MEMORIAL FOUNDATION
    AUSTRALIA
    INVEST IN ME
    UNITED KINGDOM

    INTERNATIONAL SCIENTISTS EXPLORE AUTOIMMUNITY IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME
    Medical and scientific experts from around the world convened in London on 30 and 31 May to discuss recent scientific developments in understanding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
    Co-Chair of the clinical autoimmunity working group for ME/CFS, public health physician Dr Don Staines stated ‘The recent discovery from researchers in Norway that an anti- CD20 B cell- depleting drug had a marked benefit in the treatment of ME/CFS has sent a clear message to scientists and medical practitioners around the world that this disease may have an autoimmune origin’.
    While the clinicians who made the discovery, Dr Oystein Fluge and Dr Olav Mella and co-workers remain guarded in drawing unwarranted conclusions from the study published in PLoS late last year, further studies are now being planned in the hope of extending the study to a number of clinical sites and to increase the number of patients in the studies.
    Dr Staines said ‘The findings of Drs Fluge and Mella and their co-workers are consistent with theories previously published that ME/CFS may be an autoimmune disease. Despite compelling evidence that this disease is linked epidemiologically to infection and the disorder possibly being a post-infection disturbance of the immune system, little funding has gone into studies of autoimmunity. This is clearly a multi-system illness which has been badly managed in terms of the research agenda.’
    Experts who will attend the meeting include Professor Noel Rose, Director of Autoimmune Disease Research at Johns Hopkins Hospital (USA), Professor Stephen Miller (USA), Dr Mario Delgado (Spain) and Professor Hugh Perry, the chairman of the UK Medical Research Council Neurosciences and Mental Health Board. Immunological discoveries which may serve to act as biomarkers for ME/CFS will be presented by Dr Sonya Marshall-Gradisnik, Bond University, Australia.

    Alison Hunter Memorial Foundation chunter@ahmf.org +61 2 99586285
    Invest in ME info@investinme.org 07759 349743



    Alison Hunter Memorial Foundation
    People with ME face enormous obstacles to access health care. Among the impediments over past decades has been research which has shifted emphasis to fatigue and fatigue states with scant regard for the myriad yet distinguishing neurological, autonomic, and gastrointestinal features of ME. Semantics and biased attributions continue to deny the severely ill, both child and adult, the right to care which addresses their acute and chronic medical needs without fear.
    The Alison Hunter Memorial Foundation was established in 1998 through the initiative of the Public Interest Advocacy Centre, Sydney. The Foundation has a primary interest in the medical, legal and social needs of people with ME and the clinical documentation of severity.
    The Foundation supports biomedical research.
    Christine Hunter AM www.ahmf.org

    Invest in ME
    There is an urgent need for a coordinated strategy of biomedical research into myalgic encephalomyelitis (ME). Good quality collaborative research efforts lead to understanding of the disease and better patient care and education of health care professionals.
    The approach to treating ME must reflect the latest biomedical research evidence and ME needs to be accepted as a mainstream disease requiring major attention from the medical profession and research institutions. Patients need access to knowledgeable ME consultants who can make correct diagnoses using proper guidelines and need to understand the disease in its all phases.
    Invest in ME is a UK charity established in 2006 by ME patients and parents of children with ME. The charity was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals.
    Our efforts are focused on setting up a UK Centre of Excellence which will provide proper examinations and diagnosis for ME patients and initiate a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).
    Invest in ME - Charity Nr. 1114035
    www.investinme.org

    SPONSORS
    Alison Hunter Memorial Foundation
    Invest in ME

    Department of Science, Information Technology, Innovation and The Arts, Queensland Government Australia






    Invest in ME
    Registered UK Charity Nr. 1114035
    PO BOX 561, Eastleigh SO50 0GQ, UK
    www.investinme.org


    The 7th Invest in ME International ME/CFS Conference 2012
    Building a Future for Research into ME Clinical and Research

    http://www.investinme.org/IiME Conference 2012/IiMEC7 Home.htm

    Support ME Awareness - Invest in ME
     
  2. Enid

    Enid Senior Member

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    Thanks dasimay - Iime - everything they do we know the only and best for ME in the UK. Ah gee do the mumbo jumbos here think we are all idiots. Apparently they have and still do. I can read science why could not they. The rest is unprintable. A joy to see real research/discoveries/pathologies involved picking up pace now. Thanks Iime for a long especially hard journey in the United Kingdom. We well know the big egos who have sort to destroy science here and infect the whole nation with it too. Now we have international experts - may the pathetic medical "establishment" (cronies) go the way of all willful ignoramuses. Or perhaps get ME - should concentrate their minds in a better direction.

    And if SW and any of his cronies are looking in - I escaped one of you collapsing in A & E - "all in your mind" - get real.
     
  3. ramakentesh

    ramakentesh Senior Member

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    ‘The recent discovery from researchers in Norway that an anti- CD20 B cell- depleting drug had a marked benefit in the treatment of ME/CFS has sent a clear message to scientists and medical practitioners around the world that this disease may have an autoimmune origin’.

    ive been saying this for a long long time...
     
  4. Overstressed

    Overstressed Senior Member

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    Personally I think -and many would disagree with me- that the autoimmune etiquette to this disease would be the next bad thing that can happen, besides of no diagnose, of course. Autoimmune would mean that you get dangerous treatments with immune modifying drugs, and no search for the real cause. And most importantly perhaps, spread of the virus will just continue.

    The only promising treatment for AI-disorders might be IL-5. Clinical trials could be starting in two years. But, as with all treatments, it's no cure. I rather have something to get rid of the horrible virus(es).

    Best regards,
    OS.
     
  5. FancyMyBlood

    FancyMyBlood Senior Member

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    Hi, Overstressed.
    I don't think I understand your argument. The chance of finding proper diagnostic markers will only increase if ít's an autoimmune disease that can be treated with auto-immune drugs. Instead of searching for a needle in a big haystack, the haystack gets smaller because we can search for biomarkers before and after improvement. Those biomarkers may ultimately point to different causes, but quite frankly, I don't care about the cause as long as there are good, effective treatment options available.
    Regarding the spread of a virus..... That issue is already getting covered by several pathogen discovery studies. I believe three are going on at the moment: a CAA one, a CFI one and a Standford one. Personally, I don't think they will find a (single) culprit, but it's important that this kind of research is done.
     
  6. Overstressed

    Overstressed Senior Member

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    Hi FancyMyBlood,

    my perception is that, if you take away the cause, you take away the autoimmune issue that's perhaps present. But I agree, it would bring up bio-markers, (dangerous) treatments, because current treatment suppress the immune system. But, I'm afraid too, that once there's treatment, that would be it. I hope they will then continue looking for the real cause. It is known that retroviruses can do such thing as AI.

    Best regards,
    OS.
     
  7. FancyMyBlood

    FancyMyBlood Senior Member

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    I'm quite optimistic once there is a treatment, funding will increase exponentially. ME/CFS research will become more mainstream and will attract many new researchers. There will also be many more clinical trials because big pharma wants a piece of the cake too. Ultimately, efforts to find a cause will increase because there is more funding and researchers.
    There are many examples of diseases with treatment options, but in almost all of them efforts to find a cause are still ongoing.
     
    Snow Leopard likes this.
  8. ramakentesh

    ramakentesh Senior Member

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    Your basing this statement on the unproven assumption that CFS is caused by a viral infection in you, or us. Rather than this being an established fact supported by peer-reviewed science, after 20 years of searching the only evidence on chronic infection is flimsy, XMRV was a dud, and the autoimmune hypothesis received too little research effort in the process.

    As an example how many viruses infect 80% females? How do you explain the sex ratio with an infectious etiology? How many infections wax and wane without measurable pathological damage over time?

    No other viral infection has been demonstrated to be a causal factor in the maintenance of any othe autoimmune disease so - assuming CFS is one - why would it be in CFS?
     
  9. ramakentesh

    ramakentesh Senior Member

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    Most autoimmune disorders seem associated with genetic histocompatibility rather than chronic infection.
     
  10. floydguy

    floydguy Senior Member

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    However, the original infection might no longer be present. It could have caused the damage and then an autoimmune process took over. Nonetheless, how do you explain low NKC function, RNaseL elevation, etc.?
     
  11. SOC

    SOC

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    Are you saying that chronic viral infections not been demonstrated to be factors in continuing or maintaining autoimmune disease, but not that viral infections could not be triggers?

    As I understand it, infections are believed to be involved in a number of autoimmune diseases, but in many cases they may be triggers rather than maintainers. On the other hand, if one has a chronic infection that can cause an autoimmune response constantly or cyclically, it seems that it could very well play a part in autoimmunity. While a chronic infection may not be necessary or sufficient for a given autoimmune disease to exist, a chronic infection could well be the reason for the maintenance of some autoimmune diseases.

    From the CDC: http://wwwnc.cdc.gov/eid/article/10/11/04-0367-t1.htm (More associations have been uncovered in the 8 years since this was published.)
     
    Snow Leopard likes this.
  12. Fred1234567

    Fred1234567

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    Lets help Dr Don Staines and Professor Sonya Marshall-Gradnisk solve the puzzle - they need a flow spectrometer (cost about $280 000 ) to look at blood cell by cell. The Alison Hunter Memorial Trust is trying to raise money for this machine lets help the researchers to help us!!!! You only need to see the amazing work done by this trust to see that it punches far above its weight and is totally committed to ME patients worldwide despite its small resource base!!! Come on the world!!!!
     
    Ember likes this.
  13. Ember

    Ember Senior Member

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    This explanation may be of interest:

     
    Enid likes this.
  14. Enid

    Enid Senior Member

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    That's brilliant Ember - what is setting up this autoimmune condition (along with many other diseases). Roll on the Virologists/Immunologists - this 21st century "bubonic plague" so to speak - it cannot be natural in the whole of nature for the self sustaining/preservating body turns against itself without some agency to disrupt. Surely the core for ME and many others.
     

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