The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Turning point or point of no return

Discussion in 'General ME/CFS News' started by Lou Corsius, Nov 18, 2017.

  1. Lou Corsius

    Lou Corsius

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    The Netherlands
    https://corsius.wordpress.com/2017/11/18/me-science-on-a-turning-point/

    ME science on a turning point
    On Wednesday November 15th mr. A. Rutte member of Parliament send me an answer following my request to react. I very much appreciate his answer and his attention to the cause of ME.
    In turn I wrote a reaction
    Van: Lou Corsius
    Verzonden: zaterdag 18 november 2017 11:45
    Aan: Rutte, A.
    Onderwerp: Re: Vraag om reactie
    Dear Sir
    Thank you very much for your e-mail! I very much appreciate your attention to the cause of ME.
    At this moment the situation concerning ME (and CFS) is that there is not a battle going on between patients on one side and scientists & physiacians on the other side, instead there is severe criticism from scientists toward the researches that claim CBT and GET lead to improvement or recovery of ME and CFS.
    Apart from this criticism, more evidence has been found indicating this is a biomedical disease.
    The vision on ME and CFS has been dominated during the last two decades by researches that claim patients have false illness beliefs and therefore maintain their own health complaints. These researches have been performed by a group of scientists in the UK and a group of Dutch scientists from NKCV (Dutch Expertise Centre for Chronic Fatigue, formerly part of Radboud UMC) who are strongly related to the British research group. This vision meets severe scientific criticism.
    – Recently the large British PACE-trial has been shown to suffer from severe scientific flaws. It is flawed to such an extend that it has no power whatsoever to substantiate the claims. This criticism comes from a large number of scientists. Many of them have signed a request submitted to the Lancet http://www.virology.ws/2016/02/10/open-letter-lancet-again/ and to Psychological Medicine http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/
    – A Special Issue of the Journal of Health Psychology has been completely dedicated to the problematic PACE-trial. http://journals.sagepub.com/toc/hpqa/22/9 I sent a copy of the the Journal to the Dutch parliamentary committee on healthcare.
    – In the meantime more publications have been presented discussing the shortcomings of the Dutch researches. A recent exemple is the analysis of the Dutch FITNET study https://www.researchgate.net/publication/319068698_FITNET%27s_Internet-Based_Cognitive_Behavioural_Therapy_Is_Ineffective_and_May_Impede_Natural_Recovery_in_Adolescents_with_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome_A_Review
    – The Agency of Health Research Quality in the United States has indicated there is insufficient evidence to underpin the effectiveness of cognitive behavioural therapy and graded exercise therapy, including the Dutch researches. http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/
    - In the United Kingdom the NICE-guidelines for the treatment of CFS will undergo a full update. http://www.meassociation.org.uk/2017/09/breaking-news-nice-decides-to-fully-update-its-guideline-on-mecfs-20-september-2017/
    – In 2015 The National Academies of Medicine (former IOM) published an extensive report, as you know, stating ME/CFS is not a figment of the mind. It is a serious complex systemic chronic disease. https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf
    - Prof. dr. Cohen Tervaert, member of the actual advisory committee of the Dutch Health Council on ME, was interviewed in Observant online (online magazine University Maastricht) ME is a dreadful, but not a mental illness, said Cohen Tervaert. https://www.observantonline.nl/English/Home/Articles/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness
    - Also in The Netherlands some physicians start asking questions about the trustworthiness of the researches that claim effectiveness of CBT and GET in ME and CFS patients. https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm
    Outside The Netherlands several researches have been done into the biomedical aspects of the disease. These researches show very strong indications that ME/CFS is a disease with a biomedical character. These studies made it clear that applying CBT and GET as a treatment is not only ineffective but can do harm. The cell metabolism on mitochondrial level appears to be severely disrupted and as a consequence physical activity can lead to a worsening of the health situation. Several researches underpinned this phenomenon. There is a long list of publications on the biomedical character of the disease available. We mentioned just some of them below.
    – Naviaux Canada: http://www.pnas.org/content/113/37/E5472.full Metabolic features of chronic fatigue syndrome
    – Fluge & Mella Noorwegen: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/ Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome
    – Fluge & Mella: https://www.ncbi.nlm.nih.gov/pubmed/26132314 B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment.
    – University of Newcastle: http://www.sciencealert.com/chronic-fatigue-syndrome-low-energy-production-in-cells-metabolic-disease
    With this overview I sincerely hope I have informed you adequately about the actual situation. This is not a battle between patients and professionals/scientists. We find ourselves at a turning point. The hypothesis telling us that ME and CFS are based on dysfunctional thoughts could not be substantiated by scientific research. Evidence has been found in several universities all over the world that this is a biomedical disease that cannot be cured applying cognitive behavioural therapy or graded exercise therapy.
    To conclude, I ask for your attention to the question why professor Van Gool and professor Severens have misinformed you about the scrutiny applied at IOM/NAM.
    I really can’t imagine professor Van Gool himself was misinformed because, according to their website, the Dutch Health Council and IOM/NAM are linked and co-operate. What was the underlying reason for misinforming you?
    At least it has been made clear that the Dutch Health Council did not contribute to their image of trustworthiness.
    https://www.coyneoftherealm.com/blogs/news/no-seats-on-the-us-institute-of-medicine-advisory-commitees-are-not-for-sale-despite-what-the-dutch-parliament-was-told
    Kind regards
    Lou Corsius
     
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  2. Diwi9

    Diwi9 Senior Member

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    USA
    WillowTree and Lou Corsius like this.
  3. mattie

    mattie

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    Supergoed stuk Lou, bedankt!

    Excellent work Lou,
    Also found the dutch version on your blog.
    Thanks,
     
    Last edited: Nov 19, 2017
    Lou Corsius likes this.
  4. Molly98

    Molly98 Senior Member

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    @Lou Corsius thank you for sharing this, this is a fantastic letter you have written very thorough and getting all the right points in.

    I hope that it has an impact. It may also be very useful as a draft or template letter for advocates to use elsewhere if you would be happy with that as it includes all the right references and gets the point across well that this is not about patients but science against a handful of CBT and GET proponents in the UK and the Netherlands.

    Great work :):thumbsup:
     
    Lou Corsius likes this.

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