ME Awareness Day / Week / Month, May 2023

Andy · Feb 5, 2023

2023 World ME Day campaign announced

"The theme for World ME Day 2023 will be the hallmark symptom of ME: post-exertional malaise. The campaign is all about changing the narrative, so that globally people begin to understand this disease more accurately. That’s why our tagline this year is “ME: the disease where pushing harder can make you sicker”.

Our 21 member organisations and countless individuals will be collaborating across the globe to get this message out for May 12th.

We’re going to keep using the hashtag #LearnFromME, because we know the ME community has incredible knowledge and expertise to share, and everyone can #LearnFromME. Whether you are a health professional, a friend, a family member, a politician, a healthcare commissioner, or a member of the public: ME is a disease that we can and should learn from."

https://worldmealliance.org/2023/02/2023-world-me-day-campaign-announced/

Shadrach Loom · Feb 5, 2023

Why the weasel “can”?

Pushing harder makes you sicker.

Sly Saint · Apr 26, 2023

World ME Day Raises Awareness Of Devastating Symptom Impacting Millions Post-COVID
press release ANZMES

May 12, 2023 – In honor of World ME Day on May 12, 2023, ANZMES and the World ME Alliance are proud to announce the launch of a global awareness campaign addressing the hallmark symptom of ME: post-exertional malaise (PEM) and using the tagline “ME: the disease where pushing harder can make you sicker.”

It is estimated that between 17-30 million people live with ME worldwide. However since the COVID-19 pandemic hit, this figure is thought to have doubled. There are now 65 million people living with long COVID worldwide, and half of those meet the criteria for an ME diagnosis.

Myalgic encephalomyelitis (ME) is a disabling, chronic and complex disease. There is no diagnostic test, cure, nor universally effective treatments for ME, and patients often suffer for life.

The hallmark symptom of ME is post-exertional malaise (PEM) – a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness. For some patients, sensory overload (light and sound) can induce PEM. These episodes are sometimes referred to as “crashes," and may last days, weeks, or permanently.

Kiwi amateur athlete, Aimee, recently diagnosed with ME/CFS, says, “I used to run competitively, now simple activities like taking the rubbish out make me feel like I’ve done a marathon. It’s hard for people to understand because I can feel okay and look okay but if I push myself today I can end up in bed for weeks.”

For World ME Day this year, the World ME Alliance campaign aims to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about ME.

World ME Alliance co-chair and Solve M.E. CEO Oved Amitay notes, “Post-exertional malaise is a devastating symptom of both ME and long Covid that is far too often disregarded or incorrectly managed by health care providers. PEM is a varying symptom that is challenging to recognize, and doing so requires intense listening to the person experiencing it. It is vital for health care professionals to identify PEM, as its presence changes the management advice a patient should be given and indicates that a diagnosis of ME should be considered. To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”

Patients from around the world are encouraged to share their PEM stories on social media and with local press, and to get involved with their national ME organizations. “If we listen to the lived experience of those with PEM, we can #LearnFromME,” says Amitay.

New Zealand is a sporting nation that prides itself on staunch strength and many carry the mantra “harden up” but for people with ME/CFS and long COVID this can be a harmful mindset because of PEM. ANZMES president, Fiona Charlton says “we want to share the knowledge around PEM to increase understanding, compassion, and create a positive thought space around pacing yourself for your own health.

“ME/CFS and long COVID can affect anyone, even athletes so it is important that we get the message across about PEM and how to manage it.”

The national and regional ME organisations in Aotearoa join together this May 12 with a special event to raise awareness about PEM and the self-management technique known as pacing. “We have made a new series of resources including video interviews with leading health professionals and people with ME/CFS and long COVID discussing PEM and how to avoid it and recover. We would love to see Kiwis getting involved sharing their own experiences” says Charlton. The event also asks people with these conditions to generate posters and share them on social media (https://worldmealliance.org/worldmeday/custom-poster/) and encourages health professionals to download new resources from the website (www.anzmes.org.nz/worldmeday2023/).

ANZMES is proud to be leading this international effort in Aotearoa/New Zealand to battle the stigma associated with ME and call for more research funding into this disease.
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full text
https://www.scoop.co.nz/stories/GE2...ing-symptom-impacting-millions-post-covid.htm

Sly Saint · Apr 30, 2023

Australia

ME/CFS/ MF Awareness Day
The Victoria Bridge will be lit Blue to support ME/CFS/ MF Awareness Day. ME/CFS/FM Support Association Qld Inc. helps sufferers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS/FM) by spreading awareness and sending them free information kits as well as having support groups meetings and a Facebook page. Its Annual International ME/CFS/FM Awareness Week which is celebrated all around the world to spread awareness on how debilitating ME/CFS and Fibromyalgia are. This Light Up is organised by: ME/CFS/FM Support Association Qld Inc. Venue: Victoria Bridge, Brisbane City. Friday, May 12, 2023.
ME/CFS/ MF Awareness Day
The Story Bridge will be lit Blue to support ME/CFS/ MF Awareness Day. ME/CFS/FM Support Association Qld Inc. helps sufferers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS/FM) by spreading awareness and sending them free information kits as well as having support groups meetings and a Facebook page. Its Annual International ME/CFS/FM Awareness Week which is celebrated all around the world to spread awareness on how debilitating ME/CFS and Fibromyalgia are. This Light Up is organised by: ME/CFS/FM Support Association Qld Inc. Venue: Story Bridge, Kangaroo Point. Friday, May 12, 2023.
ME/CFS/ MF Awareness Day
The Reddacliff Place sculptures will be lit Blue to support ME/CFS/ MF Awareness Day. ME/CFS/FM Support Association Qld Inc. helps sufferers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS/FM) by spreading awareness and sending them free information kits as well as having support groups meetings and a Facebook page. Its Annual International ME/CFS/FM Awareness Week which is celebrated all around the world to spread awareness on how debilitating ME/CFS and Fibromyalgia are. This Light Up is organised by: ME/CFS/FM Support Association Qld Inc. Venue: Reddacliff Place, Brisbane City. Friday, May 12, 2023.
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MSEsperanza · May 6, 2023

Anil van der Zee on Twitter: "A short blog post for M.E. Awareness Month for the #MillionsMissing Missing."

https://t.co/fYldgZODZI

https://twitter.com/user/status/1653054380449357824

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ahimsa · May 6, 2023

The USA #MEAction Millions Missing 2023 event will be on May 12 at the Washington Memorial.

There will be an art installation, rows of cots/beds to represent folks with ME and Long Covid. The cots will have decorated pillowcases sent in by patients/friends/family.

There will also be a live-streamed press event. The MEAction website will post a link on the page below when it's available.

https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/

Watch if you can - more viewers means more media attention!

More posts about this event are on this thread:

https://www.s4me.info/threads/usa-news-from-meaction.19675/page-5#post-470148

ahimsa · May 6, 2023

#MEAction UK and Scotland have planned an online photo campaign for Millions Missing.

"We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?"

Two photo categories:

1) Your view with ME

2) Spaces people with ME are missing from

#MEAction Scotland is also asking folks to email their MSPs:

https://www.meaction.net/2023/04/20/meaction-scotlands-plans-for-millionsmissing/

More posts in this thread:

https://www.s4me.info/threads/united-kingdom-news-from-meaction-network-uk.23488/#post-472713

ahimsa · May 6, 2023

Blue Sunday, The Tea Party for M.E. (an online event), is scheduled for 14th May this year.

Organized by Anna Redshaw. She describes this event as a "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."

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More details here:

https://the-slow-lane.com/blue-sunday-2023/

Please use these donation links to help keep track of donations made for Blue Sunday:

https://the-slow-lane.com/donation-pages/

ahimsa · May 6, 2023

Here's Solve ME's post about World ME Day:

https://solvecfs.org/announcing-the-2023-world-me-day-campaign/

Solve ME said:

We’re joining our peer organizations at the World ME Alliance again for World ME Day 2023. This year’s theme focuses on the hallmark symptom of ME/CFS: post-exertional malaise. The goal of the campaign is changing the narrative and creating a more accurate and universal understanding of this disease. That’s why our tagline this year is “ME: the disease where pushing harder can make you sicker”.

The Alliance’s 21 member organizations and countless individuals will be collaborating across the globe to get this message out for May 12th.

We’re going to continue using the hashtag #LearnFromME, because we know the ME/CFS community has incredible knowledge and expertise to share, and everyone can #LearnFromME. Whether you are a health professional, a friend, a family member, a politician, a healthcare commissioner, or a member of the public: ME/CFS is a disease that we can and should learn from.
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ahimsa · May 6, 2023

The CDC has a web page for ME/CFS International Awareness Day:

https://www.cdc.gov/me-cfs/resources/awarenessday.html

A few quotes:

Outreach: Awareness & Education

CDC recognizes the importance of outreach to increase awareness and education of ME/CFS.

On May 12, 2023, CDC will “light up” its Atlanta campus in blue in recognition of ME/CFS International Awareness Day.
...

CDC continues its Voice of the Patient series to recognize people living with ME/CFS and to share their experiences in their own words. We hope these stories foster patient connections and provide valuable insights for healthcare professionals.
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ahimsa · May 6, 2023

A post from Encephalogirl about Bateman Horne Center's two virtual ME Awareness events in May:

https://encephalogirl.substack.com/p/reflections-of-mecfs-fm-and-lc

To save some clicks here are direct links for the two events:

May 9 - Awareness Event with Reflection of ME/CFS, FM, and LC
https://batemanhornecenter.org/event/awareness-day-event-with-reflections/

May 12 - Reflections of the Life, Art, and Illness of John Kaly
https://batemanhornecenter.org/event/reflections-of-the-life-art-and-illness-of-john-kaly/

Facebook link:

rvallee · May 6, 2023

ahimsa said: ↑

The CDC has a web page for ME/CFS International Awareness Day:

https://www.cdc.gov/me-cfs/resources/awarenessday.html

A few quotes:
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Damn inflation, look what little $5M per year buys you these days.

Trish · May 7, 2023

Minnesota ME / CFS Alliance

Join us on May 11th at 3:00p.m. (Central) for #MillionsMissing Minnesota! Zoom link is below. We are fortunate to have amazing guest presenters. We will also have time for community discussion & questions.

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Ravn · May 7, 2023

The World ME Alliance Youtube channel currently has one video from last year (some may find a few familiar faces) and a new one from Holly from Northern Ireland talking about her PEM experience

https://www.youtube.com/watch?v=EWrA7_zvf8U

Sly Saint · May 8, 2023

Join the #Millionsmissing Press conference

May 12 @ 2:00 pm – 3:00 pm America/Washington, DC
Washington, DC – We will hold a press conference this Friday, May 12th on the National Mall in front of a massive installation of 500 cots to represent the millions of people missing from their lives due to ME/CFS and Long COVID, and to call on the government to take URGENT action.

https://www.meaction.net/event/media-join-the-millionsmissing-press-conference/

Trish · May 7, 2023

I'm pleased to see that events are happening around the world again this year, though of course sad that we still need to raise awareness.

Sometimes the struggle feels overwhelming, and sometimes, much as we'd like to help to run events or participate in them, some of us are too sick to do so.

We have a thread in the members only area here for anyone who wants to share their feelings about not being able to participate this year.

rvallee · May 7, 2023

Hopefully this is the year long haulers participate with the full understanding that they are stuck in the same cell with us.

It's been a massive disappointment how little support there has been. And not just for us, those who recover from LC all seem to move and forget all about it. I thought this would actually be a positive but it's not even happening. What a terrible species we are towards one another, we only care about what affects us, and only as far as it does. And the actual profession supposed to help us has been so much worse at this that they have been the problem for a while now.

We're basically still just clothed barbarians.

Dakota15 · May 8, 2023

In Minneapolis, MN this week, for World ME Day.

MN is recognizing on May 11th as their community is meeting that day (so they can partake in federal/international efforts on the 12th). Just wanted to share.

I believe several staff members representing Minnesota Senators & Representatives, along with staff from Minnesota Department of Health (MDH) will be joining the May 11th meeting with Dr. Grach & the patient community.

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Sly Saint · May 8, 2023

Sly Saint · May 27, 2023

Merged

World ME Day asks you to learn about the broken energy system in ME/CFS

If you've never heard of post-exertional malaise (PEM) you're not alone. But for people living with ME/CFS or long Covid understanding PEM is crucial to managing their illness. World ME Day on May 12 is an opportunity to increase your understanding of this little-known phenomenon.

Post-exertional malaise (PEM) is something that everyone with ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) experiences. So what is it? Put simply, PEM is a debilitating and abnormal response to normal activity.

People with ME/CFS and long COVID have what is called an energy envelope. This is the amount of energy they have on any given day to function. Research and experience shows that if a person expends an equivalent amount of energy to the amount they have available they will reduce the symptom flares they experience.

When people with ME/CFS and long COVID push to do more than their energy envelope can cope with, the severity of their symptoms increase. This period of reduced functionality and exacerbation of symptoms typically starts within 12 to 48 hours after the activity or exposure and may last for days, weeks, or may also be permanent.

When PEM hits, people report existing symptoms increase, and that new ones appear including brain fog (executive functioning), flu-like symptoms (sore throat, muscle pain, increased fatigue); muscle weakness; increased sensitivity to noise, light or touch; pain; sleep problems.

How much and what type of exertion triggers PEM is different for each person. Triggers can include:

â physical (walking around the mall or folding the washing);

â cognitive (thinking, talking, reading)

â processing emotional events (both positive and negative stressors)

â sensory overload (noise, light, touch, smell, temperature, vibrations such as in vehicles) â physiological processes (digestion, temperature regulation, fighting infections) â orthostatic (sitting or standing upright vs lying down)

â multi-tasking (even if individually each activity is within their Energy Envelope, e.g. talking while walking, or thinking while in a noisy environment)

Leading ME/CFS researcher Dr Lynette Hodges, Exercise Physiologist, Massey University, says "Individuals with ME/CFS are not lazy or deconditioned. Our research has shown physiological changes for those with ME/CFS. Both planned exercise and even simple activities of daily living can cause PEM."
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http://www.voxy.co.nz/health/5/416445

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ME Awareness Day / Week / Month, May 2023

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