ME Awareness Day / Week / Month, May 2022

Kalliope said:
Stuff science columnist Dr Siouxsie Wiles writes:

Stuff Here comes the long-Covid tsunami

Quote:

May 12 is the anniversary of the birth of Florence Nightingale, the English statistician and social reformer credited with founding modern nursing.

While you might remember Nightingale as the “Lady with the Lamp”, you may not know that when she founded her nurse training school in 1860, she was virtually bedridden with an illness resembling ME/CFS. This is why May 12 is now International Awareness Day for ME/CFS.

ME/CFS is a serious, life-long illness affecting multiple body systems and which often, but not always, happens after an infection. The ME stands for Myalgic Encephalomyelitis which was how the Americans first referred to the disease. The British called it Chronic Fatigue Syndrome, hence the CFS.
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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
Tuesday 10 May 2022 9:03

Founder of the Hope4me and Fibromyalgia NI charity, Joan McParland hopes World ME Day (Myalgic Encephalomyelitis) day will shine a much-needed light on ME awareness.

This Thursday will mark World ME Day and Joan encourages everyone to show their support.

Joans story

Joan is from Bessbrook and worked as a school meals organiser until developing a sudden viral illness at the prime of her life and has been living with ME since 1999. The condition has led to her being largely housebound with only a few hours of energy a day, there is no effective treatment or cure.

Like many people being diagnosed with ME, this has led to Joan having to adjust to major changes in her life:

"I got a virus in 1999, and thought little of it, but I never recovered. That was twenty-two and a half years ago, the first ten years I was completely bed bound. Over the years I have very gradually regained about 2 or 3 hours a day of energy and that’s the only part of the day that I can function."

Joan felt very in the dark when she was diagnosed with ME. In terms of the entitled support from the NHS she felt she had none. Joan decided enough was enough decided to take matters into her own hands and started her own charity - Hope4ME and Fibromyalgia Northern Ireland.
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https://www.newrydemocrat.com/news/...nd-show-your-support-this-world-me-day-24730/
 
Lou B Lou said:
The trivialising list of symptoms in this (otherwise very good) article is taken straight from the NHS.uk pages on ME/CFS (article 'Elderly woman bedridden for 26 years due to ME hits out at those who call those affected lazy').

The NHS pages (mis)info must have been added by the journalist, and badly detracts from the excellent statements by the pwme in the article which emphasise the seriousness of ME. This is just one example of how the NHS is still misrepresenting ME.
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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.
 
UK Parliament
ME Awareness Day 2022
EDM (Early Day Motion) 32: tabled on 11 May 2022
Tabled in the 2022-23 session.

This motion has been signed by 4 Members. It has not yet had any amendments submitted.

Motion text
That this House recognises 12 May 2022 as Myalgic Encephalomyelitis (ME) Awareness Day, which aims to highlight the impact this condition has on approximately 250,000 people across the UK; commends the endless dedication of campaigners and charities working to raise awareness of ME as a serious and debilitating neurological condition; welcomes the publication of the new National Institute for Health and Care Excellence guidelines on ME/CFS which has removed the recommendation of graded exercise therapy; looks forward to the full implementation of these guidelines as part of a complete overhaul of how ME services are planned and delivered; and calls on the Government to take urgent and significant steps to improve health and social care provision for people with ME.

Signatures (4)
The first 6 Members who have signed to support the motion are the sponsors. The primary sponsor is generally the person who tabled the motion and has responsibility for it. The date shown is when the Member signed the motion.







Monaghan, Carol
Scottish National Party
Signed on 11 May 2022
Glasgow North West
Primary


Maskell, Rachael
Labour
Signed on 12 May 2022
York Central


Edwards, Jonathan
Independent
Signed on 12 May 2022
Carmarthen East and Dinefwr


Smith, Cat
Labour
Signed on 12 May 2022
Lancaster and Fleetwood
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https://edm.parliament.uk/early-day-motion/59735/me-awareness-day-2022
 
Andy said:
First World ME Day and theme launched by alliance members

"The World ME Alliance, a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations and unify efforts to raise awareness and campaign together on Myalgic Encephalomyelitis (ME). Through collective action, we will step closer to our goal of a world without ME.

World ME Day will build on the incredible efforts of advocates around events, such as ME Awareness Week and Chronic Immunological and Neurological Diseases (CIND) Awareness Day. By focusing on a single day and collaborating across many organisations, we aim to maximise our collective power.

The theme for the first year of World ME Day is #LearnFromME."

https://worldmealliance.org/2022/02/first-world-me-day-and-theme-launched-by-alliance-members/
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The World ME Alliance article gives a link to a website which I can't open:
Code: 
https://www.worldmeday.org/
Can anyone else open it?

Edit: I found a different link via the Solve ME website:

http://worldmeday.org

When I clicked on that it took me to:

https://worldmealliance.org/worldmeday/
 
Andy said:
‘Blue Sunday’ 2022

"Once again, I’m hosting my Tea Party For M.E. for people with M.E. and their family and friends. I strongly believe that we need and deserve as dedicated day of fundraising, but also a day where we can come together to mark and celebrate our resilience and our strength in the face of this cruel and life-altering disease.

On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes."

https://the-slow-lane.com/blue-sunday-2022/
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A day late but hey, who's counting
What Do You Know About ME? World ME Day Asks You To Learn More
Friday, 13 May 2022, 6:36 pm
Press Release: Learn from ME
Post-infectious diseases like Myalgic Encephalomyelitis (ME) and Long COVID are more common and much more serious than most people realise. These illnesses can devastate the lives of those affected and their whānau, and there is no effective treatment or cure.

The inaugural World ME Day on 12 May 2022 aims to close this knowledge gap. Initiated by the World ME Alliance, the day is an urgent call for better recognition of ME/CFS, Myalgic Encephalomyelitis /Chronic Fatigue Syndrome, for better training of health professionals and for more research funding.
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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
 
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