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    UK House of Lords/ House of Commons - relevant people and questions

    Here they are being rediagnosed with FND
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    Congressman Jack Bergman becomes Champion for ME

    I have emailed also - Dear Congressman Bergen I’m writing to thank you for your support for those with ME/CFS. As you will know this is a worldwide issue, and the US has taken a lead in its recent assessment of GET as being an ineffective treatment option for ME/CFS. Whilst we are not in the...
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    Inclusive Education for Students with Chronic Illness—Technological Challenges and Opportunities - Anna Wood June 2019

    paper attached
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    Inclusive Education for Students with Chronic Illness—Technological Challenges and Opportunities - Anna Wood June 2019

    Thanks @Sly Saint Nisai and Interhigh have been providing virtual real time with recorded lessons ( amongst other providers for over a decade). Many parents who can fund it use it and it is a gamechanger. Some LAs will find Nisai in England , Wales and NI. The IT is not an issue, the...
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    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    Is it normal practice to publish a " taster" and invite comments prior to publication of the full piece? It just seems weird.
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    Heart Rate Variability and ME/CFS

    Interesting. We have done 2 hair tests, around 6 months apart to track electrolyte/ cation status The second test showed improvement in electrolyte ratios , but a high level of mercury ( not high previously) and increase in aluminium levels. My assumption was that improvement in methylation...
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    Sympathetic Nervous System (SNS) issues ?

    Over the past 3-4 weeks my daughter seems to have developed a SNS stuck in overdrive. It is not sustainable, making things worse. I have a call with GP this morning, but am not sure what can be used to support/ address things. If anyone has been in a similar position and has any pointers , i'...
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    New video: Children with ME

    Great video again @Adam pwme . Will share as widely as i can .
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    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    This is total mince . ( Scottish term akin to being utter rubbish) ETA the funding being turned down, not the research. I think this just evidences @Jonathan Edwards comments re MRC.
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    Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

    Subsets would only be relevent if they could be identified pre exercise. It never ceases to amaze me that If the starting point is to " first do no harm" , if you cannot identify who will be harmed, how is any " treatment" ethical. This is not a bit of extra muscle ache!
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    Machine Learning-assisted Research on ME/CFS

    If melatonin is being prioritised as an antioxidant would yhis knock on to body clock dysregulation and sleep isdues?
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    Machine Learning-assisted Research on ME/CFS

    Great news @mariovitali
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    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    Is this normal practice. If not, then it raises more questions re BMJ.
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    Updates from the UK ME/CFS Biobank / CureME team

    Brilliant - thank you @mariovitali
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    #MEAction Scotland News

    Please have more " faults" !
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    Bile Acids and the Gut Microbiome, 2015, Ridlon et al

    Tagging @mariovitali
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    Beware creating a moral panic about antivaxxers Fiona Fox The Times 2019

    or those who cannot medically deal with certain types of vaccination - live vs non live etc due to underlying conditions
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    W What constitutes a full neurological examination. Our diagnosis ( default CFS) was by paediatrician - i can' anythingt recall remotely neurological in her examination Eta read post explaining. Don' t think as full an exam.as suggested was done. Deteriorated since then anyway.
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    For many getting any kind of referral from a GP is difficult. That alone may skew things. If it is not something that has an association then who will look for it?
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    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Has mRNA been tested?
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