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  1. bicentennial

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    - and did the national research-evaluation platform(s) evaluate this independently? Sensitisation is an unusual reactivity to traces of substance following exposure eg frequent exposure of: - farmers to hay dust - dentists to mercury vapour - residents & workers to moulds (which can also...
  2. bicentennial

    Scottish ME/CFS clinical service provision

    So did Dr Scott mean it in 2023 when she told Parliament that we must: ""develop experts in long Covid, which means seeing the patients, so that we can come up with the right studies, and the right questions to move things ... ""come up with the right studies and the right questions to move...
  3. bicentennial

    Scottish ME/CFS clinical service provision

    How was the Scottish Hom. Hospital renamed? Has it the same name as the Engish renamed one? Anyway I suppose these Long Covid merger-clinic "strategies" must be evaluated - I expect independently - by a national research platform, since these strategies seem to be offered as therapeutic...
  4. bicentennial

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    Sadly an expedient of the next predicted pandemic might fix a lot of trading people not now on the same page - who will not agree on equable peace, health, safety and environment, - not until needs must. Even then, trading bureacracies could not rise to the 2020 occasion, stuck in formulas...
  5. bicentennial

    Scottish ME/CFS clinical service provision

    (Edit - the link to the Long Covid Inquiry report now works) She came in with the Scottish Long Covid Inquiry in 2023, on the 9th of July being the day after she started as a consultant in infectious diseases and clinical pharmacology, at Raigmore Hospital, in Inverness. She was also part of...
  6. bicentennial

    Scottish ME/CFS clinical service provision

    Below is a a lost and found post (since my browser got seized up some days ago when 2 hours sleep was not enough here either). Meanwhile this discussion was continued on the new thread for: Scottish ME/CFS clinical service provision where: 2 of Dr. Scott's recent research papers are linked -...
  7. bicentennial

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    mmmm. I saw the pick 'n mix, free-for-all version of the NHS claim that: 1. Undiagnosed intestinal failure (partial) is a FODMAP symptom so - in primary care - almost all NHS & commercial gastro-dieticians must now specialise to prescribe stringent - experimental - FODMAP diets 2. Systemic...
  8. bicentennial

    2025-2026 Norwegian chronic fatigue guidelines - draft published

    How long have these "dedicated people" in their highly subsidised specialist clinics been "helping severely ill patients along the way", with mental strategy to discover hidden gratitude, goals and priorities - hidden because if you ask them some patients say "I don't have any so please help...
  9. bicentennial

    2025-2026 Norwegian chronic fatigue guidelines - draft published

    Lovely to see the position assumed out in the open defining itself at last Quite possibly scoring an own goal while competing for contracts I guess the objections are to: 1. PEM warranting exemption from the fringe rehab program which insists on treating 2 different cohorts, maximising its...
  10. bicentennial

    United Kingdom: ME Research UK (MERUK) News

    I am much moved by the sound of grounded confidence. l much like the 2nd objective, looking for directon in a small study to see if these proteins might illuminate what on earth has been so hard to detect - what cripples people. Or at least trace its impact. And the team would even like to...
  11. bicentennial

    Preprint Development and content validity of the Clinal Needs Assessment for Myalgic Encephalomyelitis (CNAME), 2025, Tyson, Fleming, Geraghty, Gladwell

    Its an ugly sham. It is not for doctors and patients. It is to validate "specialists", wanting leeway to renew non-compliant, obsolete, highly subsidised contracts, but in standardised markets Some obscure "specialist" clinics for niche "rehab" failed to collect their own data because it gave...
  12. bicentennial

    Scottish ME/CFS clinical service provision

    Big problem with bulk-processing systems requiring communication. Phoning or surfing into digital meetings requires technical know-how and technical support. Not available from the remote teams operating such meetings. They often don't even know if - or how - its possible to phone into a video...
  13. bicentennial

    Scottish ME/CFS clinical service provision

    No, according to the news from Scotland, I think more steps forward than backward regressors can drag down. Its just not clear to me how Long Covid Kids and Long Covid Support got on with the new Long Covid Network Lead. And if she is achieving what she set out to achieve in 2023, since...
  14. bicentennial

    Scottish ME/CFS clinical service provision

    The Government was reminded that this fund obviously needs to be an annual commitment. A new Lead had re-oriented the Long Covid Network, committing it to sustainable provision, with a broader post-viral remit. So now its an annual budget - still open to a rehab remit. No doubt coveted by...
  15. bicentennial

    ADHD - general news and discussion

    In passing, this video clip notes that diagnosis may prevent mental distress, misdiagnosis, self-medicating addiction, and save lives. The presenter then concludes: "Its the age old story, of people who have a menstrual cycle being dismissed, and NOT included in research "Hormones are...
  16. bicentennial

    Scottish ME/CFS clinical service provision

    My observation is linked with reference to the Scottish Parliament's Long Covid Inquiry. That needs a lot of quoting: Long Covid Inquiry Not likely since the Long Covid Inquiry examined and assessed rehab being unsuitable for some patients, with remote clinics being distinctly inadequate for...
  17. bicentennial

    United Kingdom: News from Forward-ME Group

    Phew. Lovely news. Key contacts and pooling thoughts, so compatible nations need not be left behind. The German research charity is also constructively extending contact Norway needs to see what an ME/CFS implementation looks like
  18. bicentennial

    2025-2026 Norwegian chronic fatigue guidelines - draft published

    Norway's continental research representative, so far one confirmed speaker from Norway: Continental incentives for compatible continental Guidelines, including new extensions of the Research Register, updates and reviews, to help Norway search for literature: The inspiration highlighted was...
  19. bicentennial

    2025-2026 Norwegian chronic fatigue guidelines - draft published

    Although its only at the draft stage, it was ready to publish. So this dissent seems to have bided its time, then signalled its dissent only at the last minute, in a cliff-hanger, when all else failed - or to exert more leverage. I doubt it just happened. Whichever side of the divide dissented...
  20. bicentennial

    Article: Deadly bat-borne virus with no cure spreading in India with 'epidemic potential' as new cases emerge (Nipah virus)

    On the WHO website, I cannot find any reference to this Nipah outbreak. The WHO indicates that India's public information is good, so we do not need WHO's authoritative, independent info. It was last year that the WHO saw a need to improve on India's public information So our news of the...
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