“It’s clear that in Carla’s case, staff are not following #NICE guidelines [#NG206]. In fact, they appear to be actively working to flout them.”
#SevereME #SaveCarlasLife #ExposeMENow #BringMillieHome
Link to #TheCanary.co.uk:
https://www.thecanary.co/uk/analysis/2024/04/16/severe-me-carla-west-middlesex/
Today is an opportune time for the UK’s #GeneralMedicalCouncil & #RoyalCollegeOfPhysicians to educate & inform relevant medics on the treatment of #pwME and specifically those of us with #SevereME following #NICEGuidance #NG206.
No more deaths in #NHS hospitals due to #ignorance &/or #iatrogenesis!
@geth @skippingmoonrocks Maybe consider sending him #NG206 the latest #NICE guideline on #mecfs
Letter to social-worker on #communication, 4,800 words. Areas included:
relevant illnesses & disabilities;
energy-limiting chronic illness #ELCI ;
speech issues;
listening & hearing issues;
vision issues;
reading issues;
writing issues;
cognitive issues;
sensation-overload issues;
social contact issues;
conclusions.
Housemate looking for SW’s email. Then I can send if off! It has taken me four weeks to draft up…
Linking the alleged #NICE fallacies in re #NG206 by inter alia the UK #PyschoCabal to #LogicalFallacies is hysterical… 😂
Link to article by @b_m_hughes on #TheScienceBit website:
Regular readers will recall that I have previously written about the UK's new healthcare guidelines for ME/CFS, as published by the National Institute for Health and Care Excellence (NICE) in 2021. Whereas the old guidance had proposed that patients be given a combination of graded exercise therapy (GET) and CBT, the newly updated guideline completely rejected these two treatments. Having completed the most extensive research review ever conducted on the matter, NICE soberly concluded that there was insufficient empirical evidence to support their continued use.
@FrooView
Housemate is finally en route home (now 23.23) and will give me a meal idc, more than 26 hours since my last.
With #SevereME one is supposed to eat & drink small quantities and often.
Per #NICE guideline #NG206 1.12.21:
“Encourage people with #MECFS who have nausea to keep up adequate fluid intake and advise them to try to eat regularly, taking small amounts often. Explain that not eating or drinking may increase their nausea.”
4/4 #VerySevereME
“Very severe ME/CFS
People with very severe #MECFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.”
Link to #NICE website & #NG206
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations
3/4 #SevereME
People with severe #MECFS are unable to do any activity for themselves or can carry out minimal daily tasks only… They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
Link to #NICE & #NG206
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations
Colin-Roy Hunter
Colin-Roy Hunter