In the run up to World ME Day on the 12th May we’re sharing more about what our member organisations are up to! Today we’re hearing from organisations in New Zealand, Italy, the USA, Northern Ireland and the wider UK.
Keep on reading to see how the power of collaboration is creating spreading World ME Day across continents.
And we’ve got more actions for you to take coming soon too, that we can’t wait to share with you!
ANZMES – New Zealand
This year ANZMES will continue with the usual writing competition, lobbying letter template for members to send to parliament, graphics and posters for the community to share on social media, press releases to all media and a guest speaker.
ANZMES is also hosting a Learn From ME event which is a collaborative initiative with the regional groups and non-profit organisations throughout New Zealand.
On the ANZMES website presentations from experts in biochemistry, immunology, and general practice will be featured, as well as interviews with people with ME and Long COVID to share the lived experience of chronic illness. This line up, and the evidence-based content shared over the next three weeks on the newly created Facebook page LearnFromME.NZ, as a lead up to World ME Day, will undoubtedly encourage friends, family, colleagues, healthcare professionals, politicians, and the government to #LearnFromME.
CFS/ME Associazione Italiana
This Italian Association has created a poster for World ME Day and is working with a person with ME to distribute flyers at a factory. They will also donate a book on the disease.
They are also collaborating with the World ME Alliance and other’s to promote campaigns and initiatives from across the globe.
Solve have been working hard on two projects for May.
First off, their US-focused Advocacy Month, that aims to connect people with ME/CFS, Long Covid, and other chronic illnesses; scientists; clinicians and caregivers to share their unique stories with Congress.
Secondly their Long Haul Voices series, that aims to amplify the experiences of individuals with Long Covid and ME/CFS, the experts devoted to improving their care, and the challenges surrounding these largely invisible, poorly-understood diseases that affect a rapidly growing population. More trailers, updates and teasers should be coming out before World ME Day.
These exciting projects are just a couples of the things happening at Solve M.E. and we can’t wait to hear more!
#MEAction are focussing on stories and the press this year. They have done incredible work getting into the press over the past year and now want to spread those skills out into the wider community.
All of this will culminate in their main live #MillionsMissing event on May 12th, and we hope to talk about World ME Day there too.
Action for M.E.
The healthcare takeover. Action for M.E. will hear from a group of healthcare professionals who have had direct interaction from people with M.E. We hope these conversations will highlight the need for us to collaborate with healthcare professionals for any change to come for people with M.E. accessing a diagnosis or once they have been diagnosed.
On the same theme, we will hear from two people who featured on the Radio 4 Listening Project. The pair discussed their experiences with ME in the 80s and Long Covid respectively.
One building will be lit up to mark World ME Day on the 12th of May and there are more announcements to come in the run up to World ME Day.
What will the public learn from ME?
Hope 4 ME & Fibro Northern Ireland
This little powerhouse of a charity has loads of actions planned for World ME Day, we’re sharing a few below, but there’s more in the works too.
- An ME Manifesto (hard copy) was sent to all charity members to give to N.I. election candidates and patient volunteers made special HOPE awareness ribbons. All Northern Ireland MPs have been sent a copy of our manifesto, a pledge to support our campaign and an awareness ribbon, with a request for their support by sharing photos on their social media outlets during May.
- BBC Talkback presenter has confirmed coverage on ME on Thursday 12th May 2022. William Crawley debates challenging issues, so far the ME discussion slot is set for 1.00pm – 1.30pm. We will circulate the recording on our social media outlets.
- May launch of a third edition of our joint project booklet of ME and Fibromyalgia patient and carer stories and self help tips. The booklet was produced in collaboration with Gemma Flood, Fibromyalgia Awareness and Advocacy Forum Ireland.
- FaceBook ‘Dress Your Pet Blue’ fun event for members to share photos of their pets supporting May12th Awareness.
More updates, links to Facebook Announcements Page and news from this organisation can be found on their website.