ME Awareness Day / Week / Month, May 2022

Dr Wiles is one of our top microbiologists (is from the UK and was voted “New Zealander of the Year” last year) due to her expertise and science writing to inform the public on covid and adviser to the NZ government’s covid response. So good advocacy.

She seems to have got mixed up with her ME history from my local experience. It was first known as Tapanui Flu here and then ME after Ramsay, medical doctors called it ME or post infectious syndrome and was coded as a medical disorder using ICD. The US called it CFS. Local ME expert/GP (and was training at the Royal Free during it’s outbreak) called it ME but as she became more aligned with US research/clinicians, called it ME or CFS (but more CFS as time went by, many people were referred to her for diagnosis and so only call their illness CFS). I have a ME diagnosis (by a physician) when diagnosed in early 90’s but the public are still clueless unless you say “chronic fatigue”. (Local psychiatrists called it many things using the DSM, a US coding system for psychiatric disorders which differs from ICD the UK uses)

 

Join Joan and show your support this World ME Day

https://www.newrydemocrat.com/news/...nd-show-your-support-this-world-me-day-24730/

 

Thank you. I keep seeing where it could have been better and we had to finish quickly as her battery was low.

It certainly wasnt my idea to put the NHS reference in - high time they included PEM, pacing and faulty energy system.

 

Radio NZ report by Patrick Hadfield (president of ME/CFS support Auckland) for Learn from ME day

https://www.rnz.co.nz/news/on-the-inside/466934/how-to-tackle-the-long-covid-threat-and-how-not-to

 

Fundraising post by Swedish crime fiction author and pwME Karin Alvtegen:

https://www.facebook.com/KarinAlvte...eJ4C8KjhMEdaHdJscEMZuyfkJhdHBJCorV7PhnVjaGvYl

 

ANZMES (supported by other NZ ME organisations) had a video World ME Day event featuring talks by Prof Tate, Dr Vallings and Dr Brooks. These have been recorded and are available here:

http://anzmes.org.nz/learnfrommenz/

 

Thank you @Forestvon

 

UK Parliament

https://edm.parliament.uk/early-day-motion/59735/me-awareness-day-2022

 

#LearnFromME | Show your support and raise awareness on World ME Day
https://www.physiospot.com/physiopedia/learnfromme/

 

https://twitter.com/user/status/1524694617047904257

 

'https://www.worldmeday.org/' doesn't work for me either, but this one does:


https://worldmealliance.org/worldmeday/

 

CDC Emerging Infections tweets:

 

Moved post

City of Minneapolis, May 12, 2022 City Council

Just sharing that Minneapolis, Minnesota highlighted ME & Long COVID on World ME Day on May 12th with a City Resolution with a hearing. The timeframe is from the start - until about 9 minutes.

 

A day late but hey, who's counting

More at link.

https://www.scoop.co.nz/stories/GE2...ut-me-world-me-day-asks-you-to-learn-more.htm

 

From a Solve email, https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

"Last week we hosted our first Solve M.E. Advocacy Café Chat of Advocacy Month 2022. Solve M.E.’s Vice President of Advocacy and Engagement Emily Taylor was joined by special guests Cynthia Adinig, Sarah Ramey, and Sarah Tompkins for a conversation about sharing our stories to advocate for change.

Watch the recording here.

Solve M.E. Advocacy Café Chats happen every Friday during Advocacy Month at 12 pm PT.

The next Café Chat takes place on Friday, May 20, and registration is not required.

Just click this link to enter: https://go.solvecfs.org/e/192652/4y...h=cBadVlgoUgPPpJZzlvV9W3Le6Njc0PB89z_M86Tlg2A

Click here for a full calendar of advocacy events.


Take Action Online Tuesday, May 18

Meetings with Senate representatives take place on Tuesday, May 18. Registration for those meetings is now closed, but you can show solidarity by posting on social media, emailing, and calling your elected officials through our Action Center!"

 

Patient advocate Sissel Sunde has been fundraising to buy copies of an interview book about ME for May 2022. The fundraising was a success, and she was able to buy and send the book together with a letter to 82 recipients, including to the Royal Family, politicians, the Norwegian Medical Association and many more.

Two MPs agreed to meet her together with four other patient advocates on May 12th in Oslo at the Parliament. They got 1.5 hours in total (much longer than originally planned) and it seems they were able to get across lots of information about ME and the situation for the patient group.

Sissel Sunde has written a blog post with a summary and with some great pictures:

Fra Spleis til møte på Stortinget
Google translation: from fundraising to a meeting in the Parliament