#MEawarenessWeek
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hopefullizzy.bsky.social
Writings from my heart.
We’re not asking much. We’re really not asking for much. #millionsmissing #MECFS #myalgicencephalomyelitis #MEawarenessweek
May 15, 2026 at 2:03 PM
danwyke.bsky.social
Tomorrow marks the start of ME Awareness Week. The first rule of #MEAwarenessWeek is...
May 10, 2026 at 6:18 AM
sabinehermisson.bsky.social
Weil du nicht hinausgehe kannst, um zu sagen:
'Da war ich auch einmal - mitten im Leben',
deshalb gehen und reden wir für dich."

(Heidrun Jannach, #MECFS-Aktionsgruppe Mödling)

#MEAwarenessWeek
May 16, 2025 at 11:53 AM
sabinehermisson.bsky.social
Für alle, mit #VerySevereME:

"Weil du schweigen musst,
müssen wir reden.

Weil du leiden musst in deiner Schwachheit,
müssen und dürfen wir Stärke zeigen.

Weil du nichts hören kannst in deiner Zelle,
müssen wir laut und klar sein in der Welt.

#MEAwarenessWeek #MECFS
Dunkles Zimmer, junge Frau im Bett liegend
May 16, 2025 at 11:51 AM
craftymissb.bsky.social
Remembering the ones we lost.
M.E Awareness Week
💙 May 12
#MEAwarenessWeek
#Art #Watercolour
#MyalgicEncephalomylitis
A painting of forget me nots
May 2, 2026 at 8:50 PM
nasheridan.bsky.social
#MEAwarenessWeek #LifeWithME #SevereFatigue 💙
May 15, 2026 at 9:44 AM
paulaknight.bsky.social
Things that Myalgic Encephalomyelitis isn't:

Tiredness
A mysterious illness
Chronic fatigue
Relieved by rest
Adverse childhood experience
Cured by pacing
Cured by brain retraining
Rare
Something to be ashamed of and keep quiet about
A nice lie in

#MyalgicEncephalomyelitis
#MEAwarenessWeek
May 15, 2025 at 8:37 AM
johnreed.bandcamp.com
This is #MEAwarenessWeek Please be aware.
johnreed.bandcamp.com/track/peace-...
Peace - Single, by John Reed & Ali Karim
track by John Reed & Ali Karim
johnreed.bandcamp.com
May 16, 2025 at 7:54 AM
pipsminitwee.bsky.social
I have been missing from life since 2000. So many #PwME are just existing, not living.
It is a much misunderstood, cruel, often mocked illness.
#MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing
#StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
May 11, 2025 at 11:14 PM
franceyme.bsky.social
Horrible history of #MyalgicEncephalomyelitis - How medical misogyny & decades of medical malfeasance by a faction of psychiatry led to no treatments for #MECFS & #LongCOVID

My story here: illustratorinterrupted.blogspot.com/2021/05/i-caug…

#MEAwarenessWeek #MillionsMissing #12May #VeryLongHauler
October 6, 2023 at 4:41 AM
lucibee.bsky.social
This is why the UK Government *urgently* needs to put together a comprehensive plan for the treatment of people with severe/very severe ME in hospital.

That means specialist centres of excellence that can disseminate knowledge to *all* hospitals in the UK.

#MEAwarenessWeek #SevereMErgency
murtoz.bsky.social Michiel @murtoz.bsky.social · May 11
We've finally managed to post an update after two months. Delay partly due to strong hints that too much honesty would affect her care; and partly because Sam has had to push way too much to try and protect Savannah from their BS.

But it's not all bad news!
#SaveSavannah #SevereMErgency #ME/CFS
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
May 11, 2026 at 11:36 AM
katybrc.bsky.social
If theres 1 thing which #MEAwarenessWeek needs to achieve it's for the #ME orgs @meassociation.org.uk &
@actionforme.bsky.social +our allies to do everything possible to stop @england.nhs.uk from inflicting the appalling life threatening abuse which Savannah & other #pwME are still subjected to
abrokenbattery.bsky.social Adam @abrokenbattery.bsky.social · May 10
Update on Savannah:

Cyclizine was restored 2 weeks after arriving in Devon, which immediately enabled her to start eating again. After nearly 3 months of “relentless agony and begging”, oxycodone injections were also restored to a level that controls her pain.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
May 11, 2026 at 12:48 PM
valebodi.bsky.social
#ME/CFS is such a punishing & invisible illness which has nothing to do with run of the mill fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners. #MEAwarenessWeek #PEM
May 14, 2026 at 10:08 PM
halcionandon.bsky.social
“Two years on & #SevereME patient Anna is still trapped in life-threatening #domesticabuse“

www.thecanary.co/global/world...

@thecanaryuk.bsky.social
#MEAwarenessDay #MEAwarenessWeek

#Community could get me to safety. Have a room? Land? Granny flat? Anything? Know someone who does? Please ask.🚨
https://thecanary.co/global/world-a…
May 12, 2026 at 10:12 AM
swastrosarah.bsky.social
#MEAwarenessWeek knowing the little I do about disability rights and legislation in England I'm starting to think #ME may need primary legislation.
@tessamunt.bsky.social I've arrived at this suggestion after much deliberation, and actively facilitating support for family carers of #pwME since 2018.
May 14, 2026 at 6:31 AM
johnreed.bandcamp.com
#MEAwarenessWeek The imaginings of one so confined...

johnreed.bandcamp.com/track/inside
Inside, by John Reed
from the album Inheritance - Album
johnreed.bandcamp.com
May 15, 2025 at 5:08 AM
danwyke.bsky.social
Today marks the start of #MEAwarenessWeek (11-17 May). More people are aware of #MECFS but work is still needed to counter misinformation and share medical information. Here are 6 myths and facts everyone should know about #MyalgicEncephalomyelitis.
worldmealliance.org/2025/04/worl...
World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME)  - World ME Alliance
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinde...
worldmealliance.org
May 11, 2026 at 6:22 AM
wildlifewend.bsky.social
@meassociation.bsky.social #meawarenessday #MEawarenessweek
ME/CFS stole my sharing care of my grandchildren
May 12, 2025 at 11:39 AM
malnutritionme.bsky.social
People with #severeME need protection from stimulation. Noise, light, scented beauty products, and even quiet talking can trigger post-exertional malaise, causing a flare up of symptoms and risking a relapse. Their room may need to be completely dark, scent free, and silent. #MEAwarenessWeek
May 12, 2026 at 9:58 AM
pipsminitwee.bsky.social
I have been missing from life since 2000. So many #PwME are just existing, not living.
It is a much misunderstood, cruel, often mocked illness.
#MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing
#StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
May 12, 2025 at 10:11 PM
mmissingaus.bsky.social
Congrats @mon4kooyong.bsky.social on retaining yr seat 🙂 Pls push Minister Butler to implement Rec 8 of the long COVID inquiry report re: more #mecfs biomedical research funding! #MEAwarenessWeek @jasemurphy.bsky.social @hayleygleeson.bsky.social
@squigglyrick.bsky.social @croakeynews.bsky.social
May 12, 2025 at 8:13 AM
meassociation.org.uk
This week (11th-16th May) is ME Awareness Week, a chance to raise awareness of the debilitating, multi-system condition Myalgic Encephalomyelitis (encephalopathy) also known to as Chronic Fatigue Syndrome (CFS). 

#MEAW2026 #MEAW #MEAwarenessWeek
IMAGE DESCRIPTION: Photo of a person lying in bed with an eye mask over their eyes. Wording reads: This week is ME Awareness Week. 11th-16th May 2026. MEA awareness logo and ribbon.
May 11, 2026 at 7:03 AM
meactionuk.bsky.social
Good news for #WorldMEDay. Gov invests £4.75m in research.
Congratulations to Action for ME, The University of Edinburgh, Decode ME Study, Oxford Nanopore Technologies, and the European Bioinformatics Institute (EMBL-EBI).
www.gov.uk/government/n...
#MilionsMissing #MEAwarenessWeek
A twist of DNA on a blue background.
May 12, 2026 at 1:34 PM
tomkindlon.bsky.social
ME Research UK
Post-exertional malaise (PEM),the cardinal feature of ME/CFS, is the worsening of symptoms following minimal physical & mental exertion.
Read about the experience of PEM www.meresearch.org.uk/the-experien...
#MEAwarenessweek #MECFS #Myalgicencephalomyelitis #postexertionalmalaise #PEM
ME Research UK: Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is the worsening of symptoms following minimal physical and mental exertion. Read about the experience of PEM: https://www.meresearch.org.uk/the-experience-of-post-exertional-malaise-part-2/ #MEAwarenessweek #MECFS #Myalgicencephalomyelitis #postexertionalmalaise #PEM What makes ME/CFS so debilitating? one factor is: POST-EXERTIONAL MALAISE (PEM) PEM is the worsening of symptoms, and potential appearance of new ones, following minimal physical or mental exertion. It is often delayed by 24 - 72 hours from trigger. "The word "exertion" may undermine the fact that basic activities such as reading a book, using a computer, engaging in conversation, showering, or even sitting up to eat a meal can be sufficient to trigger an episode of PEM among particularly ill individuals." - Bateman Horne Center, PEM series ME INFORM. INFLUENCE. INVEST. RESEARCH UK SC036942
June 1, 2024 at 3:23 PM
malnutritionme.bsky.social
To help a friend with #severeME, send a card showing that you are thinking of them and don't expect a reply. Offer to collect prescriptions, help with shopping, posting letters and parcels.
#MEAwarenessWeek
May 14, 2026 at 3:09 PM