Thank you to over 100 people who submitted artwork for the 5th year of this project. All artwork is by people with Severe Myalgic Encephalomyelitis. Some artwork might have been created before they were severely ill and some created while severely ill.
#SevereMEday #UnitedForME
"Have you ever thought of what it would feel like to be stuck in your house for 10 years, and the only people you get to see, you have absolutely nothing in common with? No new thoughts, no new ideas, nothing new you haven't heard before. Everything is grey. Everything is frozen. The same day repeats 10,000 times over. You are still the same, and nothing changes. Credit: @tink_ina #SevereME #SevereMEDay #MEAwarenessHour
"Have you ever thought of what it would feel like to be stuck in your house for 10 years, and the only people you get to see, you have absolutely nothing in common with?
No new thoughts, no new ideas, nothing new."
Credit: @tink_ina
#SevereME #SevereMEDay #MEAwarenessHour
For this last day of #SevereME awareness week... Credit: THE ME ASSOCIATION The CRP blood test and ME/CFS The CRP (C-Reactive Protein) blood test is a very useful but non-specific marker for infection or inflammation in the body. If the CRP level is raised, this suggests that there is some form of infection or inflammation occurring somewhere in the body - even though there may not be any obvious symptoms or signs that would help to demonstrate where in the body this is located. Question and Answer on the CRP blood test from the MEA Medical Matters Library: https://meassociation.org.uk/medical-matters/items/crp-blood-test/#:~:text=In%20the%20case%20of%20ME,test%20will%20probably%20be%20repeated. Dr Charles Shepherd Hon Medical Adviser MEA Note from Carrie: I've never had anyone mention the correlation between CRP and ESR and MECFS, however my inflammatio levels are always high thanks to Spondyloarthritis and I've trialled every NSAID, DMARD, and biologic known to man with very little success for my arthritis. Anyways, I hope this resource helps you. #SevereMEDay #SevereMEAwareness
CRP & #MECFS
The CRP blood test is a useful marker for infection/inflammation in the body. If the CRP is raised, this suggests that there is some form of infection or inflammation occurring somewhere in the body - Q&A on CRP from ME Library:
meassociation.org.uk/medical-matt...
#SevereMEDay #pwME
"For someone with ME, going out for coffee can be a multi-day endeavour. Rest days before and after, likely in bed. Of course, your friends only see the small bit in the middle at the cafe with you the bit where you look fine." Credit: PotatoMasherAnnie
The photo on the right is two cups of coffee that represent me with my bestie Jaclynn on March 8 2025 and the first time I've been able to have coffee out in five years! Credit: Carrie Kellenberger
"For someone with ME, going out for coffee can be a multi-day endeavour. Rest days before and after, likely in bed. Of course, your friends only see the small bit in the middle at the cafe with you the bit where you look fine." ~PotatoMasherAnnie
The photo on the right ALT
#SevereME #SevereMEDay
"Many of us were high achievers. We were changing the world and then we changed beyond recognition. I don't need my old life back. I'd like to be able to drink a coffee in the sun, read a book or have a conversation. To do these things without suffering." Credit: Faith Oxenbridge #severeME #LivingDeath #SevereMEDay #UnitedForME
"Many of us were high achievers. We were changing the world & then we changed beyond recognition. I don't need my old life back. I'd like to be able to drink a coffee in the sun, read a book or have a conversation. To do these things w/o suffering."
Credit: Faith Oxenbridge
#severeME #SevereMEDay
‘And hospitals? Terrifying. Medical professionals aren’t trained in severe ME, so they almost always do things that make the patient worse — prolonging the torture and lowering what little quality of life they have left’ @franceyme.bsky.social
#SevereMEDay
amandafrancey.medium.com/today-is-sev...
When a healthy person's hopes and dreams are crushed, they often fall apart.
ME/CFS patient's hopes and dreams are crushed over and over again. Every. Single. Day.
1/2
#SevereMEAwarenessDay #SevereMEDay #MECFS
"You have a way w/words. I don't think anyone really understands until they have ME. I lose functionality monthly. I am 10 years ME in June. Instead of firsts I have a lot of lasts. The last time I could travel, work, drive a car, grocery shop, read a book, get a pedicure, etc..." Credit: Heather Hayes @hhayes91 #SevereMEDay #SevereME #MySeveralWorlds #pwME
"I don't think anyone really understands until they have ME. I lose functionality monthly. I am 10 years ME in June. Instead of firsts I have a lot of lasts. The last time I could travel, work, drive a car, grocery shop, read a book, get a pedicure, etc..."
Credit: @hhayes91
#SevereMEDay #SevereME
Menschen mit Myalgischer Enzephalomyelitis kritisieren in Frankfurt zum wiederholten Mal eine unzureichende Versorgung und Pflege.
Guter Artikel anlässlich der #Liegenddemo zum #severeMEday über #MECFS und die damit verbundenen Probleme, die Betroffenen das Leben zusätzlich erschweren.
As someone currently recovering from taking a shower (this may take an hour at least)… this, this, 100% this.
❤️🩹 #SevereMEDay #OneLove
Pflegeanleitung anlässlich des gestrigen #SevereMEDay - leider trotz Arbeiten auf Hochdruck erst 1 Tag danach veröffentlicht. Er bietet Hilfe zur Selbsthilfe und ist nur ein Tropfen auf dem heißen Stein, solange strukturelle Pflegeversorgung fehlt. Liebe Schwer(st)betroffenen: Wir denken an euch 💙
"My body is having an unreasonable reaction to a reasonable action."
Yes! Thank you, Hollis for this reframe. The language we use matters.
#SevereMEday #UnitedForME #SevereME #pwME
We are honored to be part of the World ME Alliance.
They have a new resource for #SevereMEDay - a clinician guide that supports crisis-appropriate treatment & can be handed directly to providers!
worldmealliance.org/2025/08/new-...
#UnitedForME #pwME #SevereMEday
#callforpublichealthaction
Germany is now demonstrating!
#severeMEday #ME/CFS #severeMEAwarenessDay
🚨!!PLS SHARE & TAG #pwME !!🚨
@natashadevon.bsky.social TONIGHT on @LBC 7-8pm
Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?'
Tel/WhatsApp 0345 606 0973
SMS 84850
#MECFS #MyalgicEncephalomyelitis
#SevereMEDay #LongCovid
Zumindest die ausgeschiedenen Gesundheitsminister haben die desolate Lage #MECFS Betroffener erkannt, ob sich jetzt endlich etwas tut seitens GBA, Politik usw. das werden wir noch sehen. Mit jedem Jahr desillusioniert man mehr, aber die Hoffnung bleibt. #SevereMEday
Waldmeer (translated):
“Do you know who's mostly missing from studies on ME/CFS? Those who are severely and extremely affected. They are further marginalized and rendered invisible by the way research is conducted. We finally need science that focuses on those who need help the most! #SevereMEDay”
Yesterday’s Channel 5 News spoke to David Spencer, father of Kara Jane, who recorded music from her bed while living with severe ME. She passed away at 32. Her posthumous second album In Limbo was released for #SevereMEDay. #MECFS
An mehren Orten in Karlsruhe wurde der Umgang mit #severeME Betroffenen angekreidet - auch vor dem ZKM (Zentrum für Kunst und Medien)
#SevereMEDay
My HIV patients, for the most part, are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my #MECFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the illnesses, and I can tell you if I had to choose between the two illnesses, I would rather have HIV. Dr Nancy Klimas 2009
Here's the original Dr. Klimas quote I was looking for #SevereMEDay
💙🫂Here's why the MECFS community continues to make loud and non stop noise about the impact of life with ME. 👉It is well known for having the lowest quality of life in patients. It also gets the least amount of funding. ♀️ Heaven help you if you are a woman! Female-dominant and male-dominant medical conditions in descending ratio of NIH funding to disease burden (2019 NIH funding: 2015 DALY) ‼️‼️In 2019, HIV/AIDS got 292 times the funding of MECFS ⬆️These conditions get more funding (per DALY) Disease/condition Funding / burden F= Female M = Male M = Male HIV/AIDS 17.7953 M = Male Tuberculosis 13.1138 M = Male Hepatitis 6.9055 F = Female STIS / herpes 5.4268 F = Female Alzheimer's disease 4.5309 M = Male Substance abuse 4.3964 F = Female Mental illness 3.8662 M = Male Drug abuse (NIDA only) 3.2639 F = Female Macular degeneration 2.8491 F = Female Conditions from Perinatal period 2.3649 M = Male Alcoholism 2.2918 F = Female Breast Cancer 2.1222 M = Male Autism 1.9579 F = Female Perinatal-birth-preterm (LBW) 1.4978 M = Male Hepatitis-B 1.4852 M = Male Parkinson's disease 1.4264 M = Male ADD 1.3532 F = Female Depression 1.0979 M = Male Prostate cancer 1.096 F = Female Ovarian cancer 1.0237 ⬇️These conditions are LESS funded (per DALY). They are also UNDERFUNDED for their disease burden.. F = Female Cervical cancer 0.894 F = Female Inflammatory bowel disease 0.8264 F = Female Multiple sclerosis 0.7372 M = Male Liver cancer 0.6284 F = Female Anxiety disorders 0.6037 F = Female Rheumatoid arthritis 0.4058 F = Female Eating disorders 0.3708 F = Female Uterine cancer 0.3099 F = Female Fibroid tumors (uterine) 0.2154 F = Female Digestive (gallbladder) 0.2034 F = Female Endometriosis 0.1836 F = Female Anorexia 0.1643 F = Female Headaches 0.0941 F = Female Migraine 0.0777 F = Female ME/CFS 0.061 From Mirin, A.A. (2021). Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health. Chart prepared by @Dreamy_Run #UnitedForME #SevereM…
Here's why the #MECFS community continues to make loud, non stop noise about life with ME. It is well known for having the lowest quality of life in patients. It also gets the least amount of funding. ♀️ Heaven help you if you are a woman!
#UnitedForME #SevereME #MySeveralWorlds #SevereMEDay
To honor #SevereMEDay, each year, #MEAction asks for art submission; this year, over 100 submitted photos, videos, music and other art to #MEAction! A compilation can be found here:
www.youtube.com/watch?v=D-F_...
A drawing of a naked human on the ground, folded with their legs under them and their arms stretched behind them. A section of their back is missing, with springs coming out of it. In the foreground are two batteries and a battery cover, as if they had spontaneously sprung out of the person’s body.
Today, August 8, is #SevereMEday. (Post 3 of 3)
This drawing by Chelsea Buivids so perfectly captures our experience as MEeps. 1/
I remain one of the #MillionsMissing
#SevereME #pwME (#MEep) #UnitedForME
#MEcfs #MyalgicEncephalomyelitis
#CanYouSeeMeNow
#ChronicIllness #Spoonie #InvisibleIllness
Two black and white stylized images, the same on each side, one turned toward the left and one toward the right. The left side is dark grey, and the right side is light grey. It shows a bed, dresser, piece of artwork, and closed window reflected in a mirror, with a human face propped up on pillows at the bottom.
Today, August 8, is #SevereMEday. (Post 2 of 3)
I don’t normally participate (or like to admit I'm in the severe category), but for some reason I did this year: here is my entry for @meactnet.bsky.social Severe ME Artists Project 2025, a self-portrait I call “Night and Day”. 1/
A yellow candle on a dark background with a white #MEAction logo in a circle. It says: "Severe ME Day of Understanding and Remembrance August 8".
PS. Also in honor of #SevereMEDay, four organizations - @openmedf.bsky.social, @batemanhornecenter.bsky.social, @solveme.bsky.social, & @meactnet.bsky.social - have launched #UnitedForME, a shared hashtag to amplify stories, art & education from the Severe ME community. 10/10
(If you have MEcfs or another energy-limiting illness, be sure to pace yourself. It can be very overwhelming and sad.) 9/
I remain one of the #MillionsMissing
#SevereMEDay #SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#Advocacy #StrongerTogether #CanYouSeeMeNow
A bench sits in front of a frame on the wall. Inside the frame is the #MEAction logo in red, and the words "Severe ME Artists Project Gallery 2025. Now open for virtual showing at #MEAction website: bit.ly/SMEAP25"
Today, August 8, is #SevereMEday. (Post 1 of 3)
The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/
I remain one of the #MillionsMissing
#SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#StrongerTogether #CanYouSeeMeNow
It was one of those nights when pain Like a rusty nutcracker held by a determined drunk woman Had me in its grasp. Pressing and pushing on differing areas With a determination far better suited and booted For a different cause. While friends, such as paracetamol and breathing techniques Pulled at her, whispering her name, trying in vain To persuade her away. Where the long hours seemed interminable, Falling into one another and back out In waves of silver agony. She loosened her grip, that drunk woman, eventually. The nutcracker still holds me; it always does. Just not so tight, right now.
Poetry isn’t my strongest suit, though I’ve been published in the past. And I apologise for bringing down the tone from cheerful and/or photos with this poem.
But it’s #SevereMEDay and I’ve been ill for 32+ years, so it deserves some acknowledgement.
