Of course, many barriers are also caused by society's lack of awareness and accommodations for people with low energy.

This is a big gap in the popular understanding of #accessibility.
#mecfs

We met Ayaan at the #LiegendDemo, who told us about accommodations during high school exams. Its possible to get extra time during an exam. For people with low energy thats not helpful as they cant sit & concentrate for so long. They would need exams broken up into shorter units.

This is just one example of how the accessibility needs of people with low energy are widely ignored by society and politics. And it’s time for that to change!
Thanks to everyone who organised and took part in the Liegend Demo!
#MEAwarenessDay #LiegendDemo #MillionsMissing

In order to join the #LiegendDemo for #MEAwarenessDay in Berlin we borrowed a free Cargo-Bike from fLotte Berlin and turned it into a bed on Wheels!

With such creative solutions we attempt to get around the barriers imposed by the illness.

ME can be a very isolating illness. Many people have so little energy that they cant leave home at all or only very rarely and at risk of a crash that will worsen their condition even more. Pacing is crucial to avoid these crashes.

Often just receiving short visits at home can already be too much. Awareness of and respect for energy levels is very important. For many even joining the #LiegendDemo online could be a harmful amount of activity.

Considering all that it shows how urgently more research, treatment options, awareness and care are needed for ME that so many of those affected took such a risk to show up on #MEAwarenessDay.

Time for society to pay attention and finally provide the support thats needed!
#MECFS

Two weeks ago today, Friday 12.5, we joined the #LiegendDemo in Berlin for #MEAwarenessDay.

One of us is also sick with ME so it was very moving to see so many people joining both physically in front of the Bundestag or virtually.
#MECFS

After making a donation to Österreichische Gesellschaft für #mecfs they kindly sent my a gift - a T-shirt. I shall be proudly wearing it on 12th May, #InternationalMEAwarenessDay #MEAwarenessDay #MEAD2023.

Text reads:

ÖG ME/CFS

ME/CES

UNVERSORGT Seit 1969

The last sentence translates as “Unprovided for since 1969”.

RT @GrandeBettina
🥁12.5. #MEAwarenessDay
Welche Aktionen geplant sind, wie Ihr #MECFS Aufklärung unterstützen könnt, findet Ihr hier #millionsmissing 👇🏼 https://twitter.com/mmissinggermany/status/1637710792991600640

[Automatic repost https://twitter.com/dystobot/status/1636015696948633601]

RT @cherylbenson: 32 years #MyalgicEncephalomyelitis add 3 strokes and 3 Dystonia Aquried Brain Injury without medical care, then add x2 COVID now #LongCovid its been a nightmare #LongCovidAwarenessDay #MEawarenessDay https://t.co/d05UNUAkkJ

I made an infographic to explain the basic stuff about M.E., hopefully it won't get too compressed to be legible. Unfortunately I can't fit all the text in the description :/
Edit: Updated a bit of the wording #pwME #mecfs #worldmeday #MEAwarenessDay

RT @MECFS_Portal: #MEAwarenessday
Weltweit leiden einer Schätzung nach 17 Millionen Menschen unter #MECFS. Heilbar ist es bislang nicht, doch es wird geforscht - allerdings nur mit geringen Mitteln. Dieses Video möchte aufmerksam machen und für mehr Unterstützung sorgen.

🐦🔗: https://nitter.eu/k_langensiepen/status/1524713559208468481

I want to be excited by this announcement by UK Govt, but experience has shown me that it's best to hold hope in check. Plus, Tories.

It will be telling whether any of the BPS lot are involved in this. If they are, then it's an immediate failure.

#MEAwarenessDay #MECFS #WorldMEDay

https://questions-statements.parliament.uk/written-statements/detail/2022-05-12/hlws23

@mecfs @chronicillness

@chemelia check out #MEAwarenessDay on twitter, and read some accounts on the ME Association website. it's honestly uncanny how close everyone's experiences of ME/CFS are, i think you'll get an idea quickly if that's what you're having. it's really important to catch it early so you don't push through it and burn out! also it's useful to have a good understanding you can bring to your doctor (it's often very difficult to get a correct diagnosis).

RT @TedDeChaneDPT
On #MEAwarenessDay, please update your knowledge on post-viral illness such as #MECFS and #LongCovid and more!

#BelieveME

These are the accounts to follow👇🏼 https://twitter.com/longcovidphysio/status/1524716458139430912

#LearnfromME #Millionsmissing #MEaction #MEAwarenessDay #WorldMEDay #pwME #mecfs

I forgot it's #MEAwarenessDay. Too tired to write a new blog. Here's one from a couple of years ago, about Slow-onset ME https://www.gwenfarsgarden.info/2021/03/slow-onset-me.html. Because not everyone who gets ME, gets it from a virus.

#MECFS #SlowOnsetME #ChronicIllness @mecfs @chronicillness

Part I:
It was the mid 2000s, & I awoke about 6am one Saturday morning. I was feeling cheery & energetic & got up to do c. 1.5 hours of gardening. After that, I had a shower and breakfast, then traveled from West Oxfordshire to West London for a no 3rd runway protest. After the protest, I visited the no 3rd runway camp & took part various activities, incl how to stop the cops from breaking a line of protesters. Got home late Saturday night. Awoke, the next day, feeling refreshed.

Part II:
Today, after 9 hours of sleep, I woke up exhausted. Going to the bathroom left me feeling weak & I had to rest again, before making my way downstairs to have breakfast. Was exhausted again, particularly after having to climb the stairs, and have spent the rest of the day in bed. After writing this, I'm going back to bed. I struggle to believe that I was once that person in Part I of the story.

#LivingWithME #MECFS #MEAwarenessDay @MECFS@gup.pe

I planned on writing something new, on using a heart rate monitor to manage my symptoms, but, um, not been well enough to do so. Hope to write that article soon.

#MECFS #MEAwarenessDay

For #MEAwarenessDay 2021, I'm sharing an article I published a couple of months ago on the lesser known, Slow-Onset ME. https://www.gwenfarsgarden.info/2021/03/slow-onset-me.html

#MECFS #SlowOnsetME #LongCovid