ME Awareness Day / Week / Month, May 2021

Got my poster:

 

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

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

Sissel Sunde: Vi er MillionsMissing
google translation: We are MillionsMissing

 

A good, brief interview from Chantelle Parry who has ME, from 1.17 mins
https://www.bbc.co.uk/sounds/play/p09fsp89

The interviewer on Radio Gloucester also has ME.

 

Source: Sussex & Kent ME Society
Date: May 9, 2021
URL: http://www.measussex.org.uk

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.

 

https://twitter.com/user/status/1391837977748332549

 

CDC has a dedicated page on its website:

ME/CFS International Awareness Day

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

 

https://twitter.com/user/status/1392052351729549322

 

May 12th....Hope, perseverance, determination, caring, logic and biomedical science!

 

The Swedish Association of Occupational Therapists:

 

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

 

Canadian Institutes of Health Research tweets:

Today is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. #MECFS is a chronic, complex, multi-system disease that affects approx. 600,000 individuals in Canada. Learn more : https://bit.ly/3tEppBi
@ICanCMEResearch
@Sabrina_Poirier

 

Video from MEAction UK: "How to turn your MP into an ally"

"Fleur Anderson MP for Putney, Alex Chalk MP for Cheltenham and Carol Monaghan MP for Glasgow North West tell the #MillionsMissing why they campaign for people with ME and how you can turn your MP into a supporter."

Code:

https://youtu.be/gUg3q-kGwHs

https://www.youtube.com/watch?v=gUg3q-kGwHs

 

Please show Hever Castle some love, after their showing us some love:



https://twitter.com/user/status/1392463227712376843


https://www.linkedin.com/posts/doct...alomyelitis-activity-6798230660050894848-mEup

 

(Facebook, Twitter and LinkedIn)

 

May 12 is also Alem Matthees birthday. This is from his mother.

postersandme on Twitter: "@TomKindlon https://t.co/gghuZ1zKyg" / Twitter

 

From Cort Johnson:

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