Progress of Commons motion that welcomes setting up of UK ME/CFS research collaborative | 25 April 2013

April 25, 2013


A total of 17 MPs have signed up so far to a Commons Early Day Motion that welcomes the launch of the UK's ME/CFS Research Collaborative. The EDM was proposed on Monday, 22 April 2013 by Annette Brooke MP, chairman of the All Party Parliamentary Group on ME – to coincide with that day's launch of the Collaborative.

The EDM proposes:

That this House welcomes the launch of the UK ME/CFS Research Collaborative; notes that estimates of the prevalence of ME/CFS range from 240,000 to 600,000 patients; further notes that research outcomes on ME/CFS have been limited and fragmented in the past; and supports the Collaborative's objectives which include promoting the need for world class research into ME/CFS across all fields, encouraging multidisciplinary research and more researchers to participate, and working collaboratively with funders, charities and researchers to increase the financial support for ME/CFS research in the UK.

Signatories so far are:

Annette Brooke, Lib Dem MP for Mid Dorset and North Poole
Russell Brown, Labour MP for Dumfries and Galloway
Mark Durkan, SDLP MP for Foyle
David Amess, Conservative MP for Southend West
Sandra Osborne, Labour MP for Ayr, Currick and Cumnock
Jim Shannon, DUP MP for Strangford
Margaret Ritchie, SDLP MP for South Down
Andrew George, Lib Dem MP for St Ives
Peter Bottomley, Conservative MP for Worthing West
Hywell Williams, Plaid Cyrmu MP for Arfon
Bob Russell, Lib Dem MP for Colchester
Lady Hermon, Independent MP for North Down
Kelvin Hopkins, Labour MP for Luton North
Naomi Long, Alliance MP for Belfast East
Andrew Stunell, Lib Dem MP for Hazel Grove
Stephen Williams, Lib Dem MP for Bristol West
David Ward, Lib Dem MP for Bradford East

8 thoughts on “Progress of Commons motion that welcomes setting up of UK ME/CFS research collaborative | 25 April 2013”

  1. The figures in this early day motion for a Government fatigue research collaborative are not found in any published research into ME/cfs, however they are similar to those for idiopathic fatigue.  Thus this collaborative is for fatigue.

    In fact these figures are similar to a paper by Simon Wessely, which comes as no surprise as his colleague from Kings college London is also a member of this Government funded collaboartive.

    Recently Dr Carmine Pariante, King’s College London, rejected that mitochondrial dysfunction, as support by work from Dr Sarah Myhill and other papers, was involved in the pathogenesis of neuroimmune ME. This can be seen in this link http://www.biomedcentral.com/1741-7015/11/64/prepub

    As you can see from Carmine Pariante’s quote below this research collaborative is supporting the Wessely school belief system.

    “CFS/ME is predominantly a condition triggered by excessive rest in predisposed individuals following acute triggers, and its interpretation requite a psychosocial and psychiatric framework.”

  2. I think you and I are on the same side, JoT. Looking at the work by people such as Prof Newton, Dr Myhill, Dr Kerr, and others, it’s difficult to see how Carmine Pariente and her ilk can have any professional integrity or scientific credibility.
    It’s also impossible to understand why the psychosocial fairytale tribe is involved in the new ‘Collaborative’ – unless the aim is to subvert it under the King’s New Clothes once again.

    1. Carmine Pariente is a he.

      I respectfully disagree Soloman. Newtons muscle research doesn’t support Dr Myhills mitochondria studies as a result of using the Fukuda criteria, which does not define any illness. Newtons says that ME is not a disease of the CNS as the WHO have recorded since 1969. Without determining if studies are looking at people with the same illness the results are meaningless.

      Dr Kerr does not do CFS research anymore.

      1. I can’t find mention of Carmine Pariente in that paper you linked. He’s not one of the authors, and when I trawled through to find that quote you gave, it’s from a paper by Maes and Twisk that debunks Wessely’s psycho-social model!

        If you’re going to throw links at people, given that most of us are too damn brain-foggy to read more than the abstract or conclusion of a paper, please make sure they’re relevant.

        With respect to Newton, her muscle research is integral to the overall picture of the disease pathways. Just because she’s not trying to find the trigger, or looking directly at mitochondria, doesn’t mean that her work isn’t indirectly supportive of Myhill’s mitochondrial studies. ME isn’t simple – you can’t isolate one system and say, it only affects that area, especially since the CNS is a major player and that’s linked to everything else!

        In 1996, Pizzigallo et al. wrote a paper on “Alterations in muscles of CFS patients at morphological, biochemical and molecular level” in the Journal of Chronic Fatigue Syndrome; 2(2/3) 76-77. That study found muscular damage at both a macro and micro level, in the same ways that Newton is now finding it, one very important finding being the documented damage to muscle mitochondria and their role in causing further muscle damage by their malfunction.

        In addition, I’m pretty sure both Peter Behan and Paul Cheney long ago linked muscle damage and mitochondrial damage as inextricably intertwined in ME. Which is why Cheney’s so vehemently against treatment involving exercise programs.

        1. Carmine Pariente was a reviewer of the paper and the link is to the reviewers comments. Pariente said this:

          “CFS/ME is predominantly a condition triggered by excessive rest in predisposed individuals following acute triggers, and its interpretation requite a psychosocial and psychiatric framework.”
          http://www.biomedcentral.com/imedia/1169912504863162_comment.pdf

          Newton said her work is not supportive of the WHOs classification.

          “Although conventionally CFS has been considered to be a disease with primary CNS pathologies and secondary peripheral consequences, our results point to possible alternative disease mechanisms.”
          http://www.sciencedirect.com/science/article/pii/S2213158212000484

  3. Indeed, helva2260, Peter Behan diagnosed me in early 1984 after muscle biopsy, EMG and immune profiling; he declared me to have ‘a full house of abnormalities’. I am therefore very pleased about Julia Newton’s findings.

  4. Personally, I’ve always believed ME is mitochondrial. This would affect every single cell and therefore, by default, EVERY system in the body. That would include the neurology.
    I arrived at this conclusion from having studied and worked in life sciences and being able to apply this knowledge to the very peculiar things going on in my body.

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