ME Awareness Day / Week / Month, May 2021

Sissel Sunde has organised a MillionsMissing digital awareness campaign with 90 participants!

It is a heart breaking read with all the names, photos and stories about how long people have been ill for and what is their hope.
All the small and big things people are missing out from :broken_heart:

These are stories in Norwegian, and I hope the google translation is somewhat ok.

Sissel Sunde: Vi er MillionsMissing
google translation: We are MillionsMissing
 
Source: Sussex & Kent ME Society
Date: May 9, 2021
URL: http://www.measussex.org.uk

Their unwavering support helped us to take me out of
school when I was really ill, and helped us to arrange my return when I
got better. They aided us in ensuring that I could have flexible hours
at school, a safe break room if I ever felt tired and a quick way to
leave school if I felt ill.
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Useful supports but recovery rates at least for adults who attend the English ME/CFS services are low as reported in a paper on the topic.
 
CDC has a dedicated page on its website:

ME/CFS International Awareness Day
May 12 is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. On this important day, we recognize and support the millions of people who suffer from ME/CFS and other chronic immunological and neurologic diseases by raising awareness and providing education. ME/CFS is a serious, long-term illness that affects many body systems.
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May 12 honors the birthday of Florence Nightingale, founder of modern nursing. In 1860, she established the Nightingale Training School, despite being virtually bedridden with an illness resembling ME/CFS or fibromyalgia.
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https://www.cdc.gov/me-cfs/resources/awarenessday.html

I was surprised to find West Suffolk NHS also has a page:
https://www.wsh.nhs.uk/Staff/Health...Fibromyalgia-International-Awareness-Day.aspx
 
The Swedish Association of Occupational Therapists:


Auto-translate said:
Fatigue, sleep disturbances, pain, cognitive symptoms. There are many similarities between postcovid and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). 12 May is International ME/CFS Day and we take this opportunity to recognise anyone with a significantly reduced activity level.

Most affected are women of working age, in many cases still without a diagnosis. We hope that new research on post-covid will help us understand and that more multi-professional clinics will be opened to make life easier for people with both post-covid and ME/CFS.

Translated with www.DeepL.com/Translator (free version)
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The Norwegian ME Association marks the international ME awareness day by allocating a bit over 1 million NOK (approximately 85 000 GBP, 121 000 USD, 99 600 EUR) to four research projects onto ME.

100 000 NOK goes to Ola D. Saugstad and Dag Gundersen Storla for planning and preparations of research projects at Røysumtunet; a place for severe ME patients which soon will be starting up.

330 000 NOK goes to "The comeback study" on ME and decal transplantation.

500 000 NOK goes to Karl Johan Tronstad at the University in Bergen to cover lab expenses.

200 000 NOK goes to Marte K Viken and Benedicte a Lie at the University in Oslo for research into genetic aspects in the immune system.

Over 1 million kroner til fire biomedisinske ME-forskningsprosjekter i 2021
google translation: Over 1 million NOK for four biomedical ME research projects in 2021
 
From Cort Johnson:

Celebrating ME/CFS Awareness Day - In So Many Different Ways
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From #MEAction's virtual event to its social media blasts, to watching Rivka's inspiring video, to listening to Whitney Dafoe's Protest Playlist and reading his journal article, to new books to read, and research efforts to join - there are so many ways to celebrate ME/CFS Awareness Day.

Check them out and add your own

Celebrating ME/CFS Awareness Day - In So Many Different Ways
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https://www.healthrising.org/blog/2...fs-fm-awareness-day-in-so-many-different-way/
 
Greeting from Wolfgang Mückstein - Minister of Health in Austria

Google translation:
On May 12., I would like to draw attention to ME / CFS, the many affected people and the necessary expansion of medical and social care. ME / CFS is a neurological disorder and complex multisystem disease, which is mainly due to physical and mental exhaustion - although calm offers no improvement. Many affected people are no longer able to work, some can barely leave the house or bed and those who are severely affected need care.
It's very difficult to get help in Austria for about 25.000 ME / CFS affected. They need an expansion of public, medical contact points, research and better awareness of the disease. A connection to Covid-19 has also been found: Long Covid-Patient:innen has already been observed that these can become ME / CFS sufferers, further exacerbating the supply situation.
In order to show solidarity with those affected and raise awareness for ME / CFS, I'm happy to wear the Austrian Society for ME / CFS t-shirt sent to me.
Photo: BMSGPK / Marcel Kulhanek

ETA: Same greeting was also shared on Twitter


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