I am no longer able to cook, so I drew dinner. #pwmecfs #mae2025

As you are able today, please give to this GoFundMe
with a one time gift or a monthly recurring donation!

Every little bit helps and is greatly appreciated.
With gratitude, Cynthia 💛

#pwMEcfs #MEcfs #StandByMecfs #StillSickStillFighting

Although Severe Myalgic Encephalomyelitis (ME) Awareness Month is coming to a close, people living with this complex chronic illness will continue to be impacted by its challenges and burdens.

#SevereME #SevereMECFS #SevereMEMonth #MECFS #MyalgicEncephalomyelitis #pwMECFS #pwME #MEAwareness

1/11
Apologies, this a long 🧵.
As a #pwMECFS, diagnosed 25+ years ago, there have been many aspects of my life ripped away from me. Dreams cancelled, friends lost, goals changed. What has surprised me the most though is how much I miss reading and having the capacity to learn. Why does this

Photo of woman (Cynthia Johnson) wearing a jean jacket going across a crosswalk on a red mobility scooter. The back drop behind her is Abbey Road. #MEcfs since 2009 #StandByMEcfs

Scan code for "Financial Stability for Chronically-Ill Advocate" GoFundMe for Cynthia Johnson

Photo of woman with ME/CFS on red and black mobility scooter in front of sign: Third Annual Community Symposium on the Molecular Basis of ME/CFS, Saturday, September 7, 2019 (Photo of Cynthia Johnson taken by her son in 2019 at an Open Medicine Foundation event at Stanford. She has suffered from ME/CFS since 2009.)

Please give as you are able today!
Help is so very greatly needed and appreciated.
The sooner that I can raise the rest of the funds, the better for my complicated health issues. It will also allow me to devote more of my very limited energy towards ME/CFS advocacy.
#StandByMEcfs #pwMEcfs since 2009

The lived experiences of #MECFS consumers have directly informed my PhD research. I am sincerely thankful to all the people with ME/CFS from whom I have had the opportunity to learn throughout my PhD candidature and who have made this research possible.

#MEAwarenessDay #WorldMEDay #pwMECFS #pwME

People with #MECFS have significantly poorer quality of life across all aspects of health compared with healthy people. Yet, the symptoms experienced by people with ME/CFS are often dismissed and the condition is poorly recognised in healthcare policies.

#MEAwarenessDay #WorldMEDay #pwMECFS #pwME

Scan code for GoFundMe: Financial Stability for Chronically-Ill Advocate Cynthia Johnson. ME/CFS since 2009

Photo of woman with ME/CFS on mobility scooter in front of sign: Third Annual Community Symposium on the Molecular Basis of ME/CFS, Saturday, September 7, 2019

Please give to this GoFundMe as you are able today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting #pwMEcfs
www.gofundme.com/f/financial-...

weißes quadratisches Plakat mit blauem Schriftzug "Im Herzen auch dabei:" und darunter ein großes Herz, das aus unterschiedlich großen Vergissmeinnichtblüten gestaltet und oben etwas offen ist

Liebe #pwMECFS aus #Esslingen und Umgebung: Wer es am Sonntag nicht zum ME/CFS-Awareness-Gottesdienst in die Osterfeldkirche ES-Berkheim schafft, aber trotzdem gerne sichtbar wäre, darf mit auf dieses Plakat!
Das Herz ist oben offen, so dass noch viele Namen hineinfallen können.

#disability
#stopthecuts
#dpac
#disabilitybenefits
#longcovid
#mentalhealth
#pwMEcfs

I’ve been my own unpaid caregiver, healthcare advocate, scheduler, artist, marketer & small business owner. It’s way too much for anyone to deal with, let alone a #PWD #PWMECFS & #PWLC among other disabilities, I truly need ongoing material support & daily sales just to survive!

Kan iemand mij iets vertellen over de praktische kant van LDN? Waar kan ik een opbouwschema vinden? Druppels of tabletten? Hoe bouw je op? Wat zijn de kosten?
Ik had mijn huisarts gevraagd of ik het mag proberen. Het mag! Maar… hoe werkt het allemaal? #pwlongcovid #pwmecfs #longcovid #mecfs

Comic: First panel is titled, “Reading the news” and shows an unhappy boy. The second panel is titled, “Reading more news” and the boy looks even more upset. In the third panel, the boy’s female friend holds out her hand to the boy and says, “You’re reading too much news. Give me your phone. I know how to help.” In the fourth panel, the girl chucks the phone out of the window and the boy smiles.

Shabbat Shalom! Wishing you the beauty of the sabbath.

Whether or not you celebrate Shabbat, I hope you can take a breather.

May you find as much peace in your mind and body as you’re able.

#chronicillness #disability #pwMECFS #longcovid

Q fever - Wikipedia

Don't know how well known this is in the #mecfs community, but I came across it recently:
en.wikipedia.org/wiki/Q_fever
"A minority of Q fever survivors develop Q fever fatigue syndrome after acute infection, one of the more well-studied post-acute infection syndromes. Q fever fatigue ..."

#pwMECFS

These findings further validate the real and physically disabling nature of #LongCOVID and #MECFS. This reiterates the need for access to multidisciplinary care and support services for all people with Long COVID and people with ME/CFS to manage these debilitating conditions.

#pwLC #pwMECFS #pwME

In this review of 16 studies, people with Long COVID and people with ME/CFS similarly experienced a pronounced burden on physical health and the ability to participate in typical daily activities, including work.

#LongCOVID #pwLC #LongCOVIDAwareness #MECFS #pwMECFS #pwME #MECFSAwareness

Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: a systematic review - Journal of Translational Medicine Purpose Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID-19 Condition (PCC) are debilitating, chronic multi-systemic illnesses that require multidisciplinary care. However, p...

Long COVID and ME/CFS were associated with significant reductions in all aspects of quality of life in our recent systematic review at the National Centre for Neuroimmunology and Emerging Diseases.

Read the full article here: doi.org/10.1186/s129...

#LongCOVID #MECFS #pwLC #pwMECFS #pwME

Comic: First image shows a peppy Early Bird, next image is of a calm Night Owl, bottom image is of a pigeon lying down saying, “Ugh” and is labeled, “Permanently Exhausted Pigeon”. Comic is by Gemma Correll.

I am a Permanently Exhausted Pigeon and boy am I feeling it today

#longcovid #mecfs #chronicillness #pwMECFS

My view of Spring (from bed). Until I'm up for Tuesday's hospital appt, this is the best for now ☀️🌷🪻

#ChronicIllness #pwmecfs #Fibromyalgia #Spring

Plant watering day. Lots of pacing required, as I have about 20 plants all over the house that need transporting to the kitchen. May take some time 😁 🌱🪴

#pwmecfs #fibromyalgia #houseplants #selfcare

This Instagram post by Four More Spoons couldn't have explained things any better #SpoonieLife #PwMECFS #ChronicPain

It's a constant battle between my head/eyes that know that I'm behind on jobs and the rest of my body that's saying: You're joking, right? #ChronicPain #PWMECFS

Please help as you can today! 💛
#MyalgicEncephalomyelitis #MEcfs #pwME #pwMEcfs

Lucas making sure his mum stays in bed 🥰 #ChronicPain #Fibromyalgia #pwmecfs

I’m a #pwmecfs Inconclusive on LC (never had a positive test) but sick since July 2020. Would love to build ME community here as I’m avoiding other apps for now

#PwMEcfs who acquired it as children ⬅️ ✋️knew our exposure certainly didn't lead to immunity.

#MEcfs #chronicillness #chronicdisability #NEISvoid #MEDsky

Could almost be a live pic from my room right now 😫 #fibromyalgia #pwmecfs

If you know, you know 😔 #spoonies #pwmecfs #fibromyalgia

Should never have passed the research team. #pwMEcfs shouldn't have to keep fighting against these 'so called miracle cures' ....was quite obvious all the dragons were thinking about was the amount of potential £££ to be made. Most disappointed. #earseeds #Dragonsden