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  1. M

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Speech isn't free, the right to freedom of expression is subject to duties and responsibilities. 5 April 2023 Adil v. GMC High Court Judgment Template (judiciary.uk) A brief summary can be found here: Covid and Free Speech in the High Court - UK Human Rights Blog Full text of Article 10 of...
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    David Tuller Crowdfunding starts May 1st 2024

    Done :thumbup:
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    Can I change my GP record terminology (UK)?

    I don't know what to say @John_Lobb except thank you so much. Absolutely perfect! ICD-11 for Mortality and Morbidity Statistics (who.int) For 12 years I've been following 3 separate lines of investigation outside of ME/CFS to establish breaches of Article 12 right to health, by denying...
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    Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

    Would this also be useful for patients who have not been tested for OI but still have problems with blood flow to the brain due to excess red blood cells and increased viscosity, and therefore exhibit similar symptoms as OI. Such as: Secondary Polycythemia Associated with COVID-19 Is...
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    Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

    This is interesting: "Why the left ear only? STAT is designed only for the left ear, because the human body is not symmetrical and we’ve found the Left External Carotid Artery is a better representation of the total blood flow going to your head." I wonder if that in any way could have some...
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    UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

    @Binkie4 I guess they were trying to tie in with 12th May and maybe that was the only slot they could get before the actual day. I got the impression that although the MPs where there, 7 or 8 I think, told their own constituents stories which did show all the relevant areas of concern. I...
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    UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

    This was a Westminster Hall debate. We operate open transparent government in the UK. Whenever there is a debate anywhere in parliament, and a briefing/debate pack is provided for MPs, and they quote statistics and figures in the debate, the briefing where this information has come from is...
  8. M

    Anyone tried Lightning Process for Long Covid?

    Current MDU advice on the question of 'best interests' of patient. How to assess best interests - The MDU
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    Anyone tried Lightning Process for Long Covid?

    Patients being treated with a therapy are protected by the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 which is enforced by the CQC. These not only include human rights protection, but also cover the procedure to be followed by HCP when harm has occurred...
  10. M

    Anyone tried Lightning Process for Long Covid?

    One more, this is the medical defence unions advice regarding obtaining consent since Montgomery v. Lanarkshire Healthboard. Montgomery and informed consent - The MDU
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    Anyone tried Lightning Process for Long Covid?

    Finally, this from 2018 prior to the case report and the systemic review of evidence referred to above. Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach (jep.ro)
  12. M

    Anyone tried Lightning Process for Long Covid?

    This is what his approach is to the NICE Guideline. His website does not include the response from NICE so no, informed consent cannot be given unless he specifically mentions it prior to payment of his exhorbitant fees. NICE guidelines for ME/CFS 2021 and the Lightning Process - The Lightning...
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    Anyone tried Lightning Process for Long Covid?

    I suppose you've got this already. A systematic review of the evidence base for the Lightning Process - ScienceDirect and this The novel application of the Lightning Process to treat Long COVID in primary care - Case report - PubMed (nih.gov)
  14. M

    The Agreed Care/Activity Plan

    Secondary Polycythaemia of 'unknown' origin is my diagnosis subsequent to a CFS diagnosis by about 6 years. Apparently my haematologist didn't think it was connected with my severe ME. I got that smile, you know the one. Exercise intolerance, fatigue, cognitive difficulties etc. Secondary...
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    The Agreed Care/Activity Plan

    I can't see anything new. Consent doesn't need to be a signed document. For example, when the community nurse visits me at home to take bloods, I've already been contacted by the the surgery and the GP has explained to me why they want to take blood samples. The fact that I let her in and...
  16. M

    Closed UK: DecodeME updates, was recruitment thread.

    Some days when it's hard stringing a sentence together I let songs speak for me, big shout out to the DecodeME team working incredibly hard, with appreciation and thanks. Clean Bandit - Rather Be (feat. Jess Glynne) (Radio 1's Big Weekend 2014) - YouTube
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    The Agreed Care/Activity Plan

    :rofl: You could just as well have been speaking in alien tongues for all the sense that made to me until - I reached the phrase "The belief that set P is the universe is a problem" that I got it. :rofl:
  18. M

    The Agreed Care/Activity Plan

    Exactly! Trial By Error: Will MAGENTA's Null Results Finally End Professor Crawley's Long 'Reign of Error'? | Virology Blog MAGENTA Trial: GET is not an effective treatment for ME/CFS - The ME Association In the trial publication it is suggested that the reason for it may be that a longer...
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    The Agreed Care/Activity Plan

    This. It's akin to saying to a child who wants to pick up a spider, don't worry it won't hurt you. For the most part that's probably true. However, when you pick up a banana beware the Brazilian Wandering Spider. 9 of the World’s Deadliest Spiders | Britannica Since we are supposed to...
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