I make #shoes, spend my time #reading & #bingewatching TV as I'm usually stuck in bed due to #MECFS #MyalgicE #MyalgicEncephalomyelitis. Sick for 17 years, stopped working as a #quality manager nearly 10 years ago.
I live with one husband, one 18yo son, three #dogs in beautiful #Tasmania. Can be outspoken on #Disability, the #NDIS, #autism & #auspol. Refugee from the bird site (@kyliecantwell)
11/
"Recommendations from the 2021 ME/CFS Guideline"
Includes:
"As soon as ME/CFS is suspected, the practitioner should give advice to manage
symptoms—especially energy management" 👍
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)
https://mdpi.com/2227-9032/10/12/2438
@mecfs #mecfs #CFS #MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #NeuroME #ME #MyE
The new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), published in October 2021, makes significant changes in treatment recommendations. It acknowledges the complexity of this chronic medical condition, which always impacts quality of life and can be profoundly disabling, recognising the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test. The guideline outlines steps for accurate diagnosis, recognising post-exertional malaise as a core symptom; importantly, ME/CFS can now be diagnosed after just 3 months in a bid to improve long-term health outcomes. It recommends the need for individual, tailored management by a multi-disciplinary team, ensuring that the wellbeing of the individual is paramount. The guideline makes clear that any programme based on fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET), should not be offered as a treatment for ME/CFS and emphasises that cognitive behavioural therapy (CBT) should only be offered as a supportive intervention. Because of the rigorous methodology required by NICE Committee review and the inclusion of the testimony of people with lived experience as committee members, this guideline will influence the future diagnosis and management of ME/CFS in the UK and beyond.
This highlights the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome.
Particularly relevant when similarities with the #LongCovid presentation in some people is being missed
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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/#CFS:
Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath"
Here's a random thought:
What if autism is just the left-handedness of thinking?
I mean, sure we struggle, but have you ever seen a left-handed person try and use a right-handed can opener?
From ME Research UK:
Vacancies – Science Writer
"…we are seeking a full-time science writer who can help us make a positive difference in communicating ME/CFS at a very exciting time.
If your passion is making science and research accessible to a range of audiences and you relish the chance of working with a small team to build our future, we would love to hear from you."
World Review from the New Statesman (Podcast)
Why the world misunderstands Ukraine
Nearly a year since Russia's full-scale invasion of Ukraine, the historian Olesya Khromeychuk speaks about how #Ukraine has been perceived by the outside world, and why the country’s courageous resistance should not have come as a surprise.
They discuss the history of civil society movements in Ukraine, why Zelensky is a successful leader, and what support Ukraine needs now.
Nearly a year since Russia's full-scale invasion of Ukraine, the historian Olesya Khromeychuk speaks to Megan Gibson about how Ukraine has been perceived by the outside world, and why the country’s courageous resistance should not have come as a surprise. They discuss the history of civil society movements in Ukraine, why Volodymyr Zelensky is a successful leader, and what support Ukraine needs now. Read more:Why the West underestimated Ukraine Hosted on Acast. See acast.com/privacy for more information.
Hello! We are a new instance for #artists and #creators, both amateur and professional. We serve the creative community and want to provide them a place to promote their work and build an audience on #Mastodon and the #Fediverse. Your fans can follow your accounts from other servers, but this is exclusively for artists and creators for now.
We're just starting out, but applications are open for artists and creators, come see us at https://artistalley.space/about
An excellent piece by Jonathan Freedland on Britons' obsession with Harry and Meghan, in which he makes the argument that the couple are still very much in the "royal business" -- as a "cruel spectacle" for the mass's entertainment.
Believe it or not, #shoes can be used as a helpful tool to open a #bottle of #wine.
And the beauty of it is that our shoes are always either on us or nearby.
This trick requires equal parts muscle and brains to pull off; like most things, it will improve with practice.
https://www.tastingtable.com/1106766/can-you-actually-open-a-wine-bottle-with-a-shoe
Tom Kindlon
Valerie Roney
ahimsa
Eugene McParland 🇺🇦
ArtistAlley.space
Paul Maplesden
Cole Haddon
Maritza Campos ☑
🇺🇸 Bewickwren 🇵🇹