A quote from my piece, The Debt Came Due, about the current #PEM crash I’m navigating.
“I find purpose in helping others. It is the through-line of my entire professional life, from child protective work to retail management.”
#LongCOVID #MECFS #PwME
substack.com/home/post/p-...
Dan Wyke - keeping hope alive Facing tough times (of whatever kind) can be hard for people with ME/CFS and other chronic conditions. Advice from healthy people on how to cope often misses the mark. With this in mind, we spotted an excellent thread on social media by Dan Wyke, a therapist with ME/CFS. We worked with him to turn it into an article on our website. Dan Wyke - keeping hope alive
"Dan Wyke @danwyke.bsky.social - keeping hope alive"
chroniclivingtherapy.com/wyke-hope-al...
Screenshot from latest Chronic Living Therapy @chronicliving123.bsky.social newsletter
#MEcfs #PwME @lammasleaves.bsky.social
7/
“(Contd) My world has compressed to the dimensions of a single level of a house, & within that level, primarily to the bed”.
* equivalent to “the ground floor” in UK/Ireland/probably some other countries
#mecfs #longcovid #pwme
6/
“I’ve moved to the 1st floor*. The upstairs where I used to sleep, where I used to have a life that spread itself across multiple rooms, is now effectively another country. I don’t go there. The energy cost of stairs is a luxury I cannot afford. (contd)
#mecfs #longcovid #pwme
5/
“(Contd) I have a bathroom that close and my doctor was genuinely concerned about the exertion cost of reaching it. That is where I am.”
#pwme #pem #longcovid #mecfs
4/
“Three months off, at minimum. Move to the first floor. Minimize every exertion. She mentioned a potty chair. Let that land for a moment. A potty chair, so I don’t have to walk the ten feet to the bathroom. (contd)”
#mecfs #longcovid #pem #pwme
2/
“Now I cannot stay upright. The fatigue is a physical weight, not a feeling of sleepiness but something more like gravity has been turned up and my body is the only thing that hasn’t gotten the memo. Screens worsen my symptoms. Sound is exhausting. (contd)”
#mecfs #LongCovid #pwme #cfs #postcovid
Muscle Fatigability in Myalgic Encephalomyelitis by @colleensteckel.bsky.social
#MyalgicEncephalomyelitis #pwME
Anyone else have experience trying this? #MECFS #LongCovid #pwME #PEM
Blue floral pattern against a cream background. Text: Happy Spring! May you find moments of joy however you may be celebrating.
May you find a moment of joy and hope as we begin spring.
May you have a moment to witness the arrival of greenery & flowers - even if it is through a photo.
If that joy just feels impossible right now, may you feel the love of your community as we hold space for one another.
#pwME #Spoonie
#mecvs #pwme #me #mecvsvereniging #contact #erkenning
#mecvs #pwme #me #mecvsvereniging #contact #erkenning
#mecvs #pwme #me #mecvsvereniging #contact #erkenning
𝗛𝗲𝗹𝗽 𝗟𝗶𝗮𝗻𝗻𝗲 𝗺𝗲𝘁 𝗷𝗲 𝗲𝗿𝘃𝗮𝗿𝗶𝗻𝗴𝗲𝗻 𝗺𝗲𝘁 𝗲𝗲𝗻 𝗵𝗲𝘂𝗽𝗼𝗽𝗲𝗿𝗮𝘁𝗶𝗲!
Lianne (67) krijgt een heupprothese.
Heb je ME en ook een nieuwe heup? Hoe verliep je herstel? Heb je nog tips?
Mail naar: lotgenoten@me-cvsvereniging.nl
#mecvs #pwme #me
NHS ME/CFS training for health care workers Canny advocate, Lucibee, put in a freedom of information request to find out if the targets for training in the UK government's 'Delivery Plan' for ME/CFS... Promoting the education of health care workers, drawing on these free resources, represents a key area the ME charities in the UK could lobby MPs and the health secretary on. Read all about it on our website! Empty Classes - NHS training on ME/CFS Empty classroom with chairs stacked on tables - neat but abandoned for the day...
NHS ME/CFS training for health care workers
chroniclivingtherapy.com/empty-classe...
Screenshot from latest Chronic Living Therapy @chronicliving123.bsky.social newsletter
#MEcfs #PwME @lucibee.bsky.social @lammasleaves.bsky.social
USA - Solve ME and #MEAction Recordings of all the Advocacy Week online sessions are now available. This forum thread also has a post with instructions for how to fill out the Community Letter Sign-On Form. Both patients and allies can sign these letters. Thread
Solve ME and #MEAction: Recordings of all the Advocacy Week online sessions are now available
www.s4me.info/threads/solv...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
Likes and comments boost the visibility of posts on LinkedIn.
If you are a #pwME, a member of the #NEISvoid, or just someone who values quality improvement studies in complex diseases, please visit this post on LinkedIn and share or leave a comment there:
www.linkedin.com/posts/jaime-....
Irish ME/CFS Association for Information. Support & Research FREE MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME EVENT. Great National South Court Hotel, Limerick. 12 noon. Thursday May 21. Talk and question-and-answer session with Dr Amolak Bansal, UK expert consultant plus chance to chat over free tea/coffee & biscuits. Organiser: Irish ME/CFS Association. No booking required. All welcome. 012350965 info@irishmecfs.org
The upcoming Dr Bansal tour is quite resource-intensive in terms of time/energy and cost. So we are investing in some ads in the local media to reach as many as possible. Here is one which is going in the Limerick Leader Monday and Weekend paper.
#MEcfs #PwME
I see parallels in the way #pwME #MECFS people with M.E and trans people have been treated by the medical establishment. Can we be allies? Both have been so gaslighted and treated like we don’t exist, our experiences aren’t legitimate, it’s psychosomatic, we’re wrong and shouldn’t be believed, etc
A black-and-white photograph of a flower bouquet. A rose is the focal point of the image.
I think it’s always worth to document whatever's in front of you. However mundane or boring it might feel in that moment there might be a time when those captures become important. 1/6
#MECFS #pwME #Photography
Extended family - from my ME/CFS photo project
glass.photo/andrewgiffor...
ALT: colour photo of a blue tit on a washing line post eyeing up a clump of wool pegged out for its bedding
#MECFS #LongCovid #pwME #Photography #Loneliness
+1. This ⤵️
I don't go to hospital as a severe #pwME anymore. I tried 5/6 times, different places... doesnt matter, it's harmful. Pure psychological and physical torture.
We are forced to learn to dissociate from the year we live in. Back to 1890. No hospitals. #ME teleports you in time.
1/2
It takes a very long time to process these losses when there's been no change in treatment or respect for the suffering of #pwME in English speaking countries.
It's not enough to have had the privilege of knowing these people; the waste of them epitomises all futility.
I’d really love to get out of here to somewhere safe where I can have a chance to have my health improve instead of withering away here, getting worse every day, waiting to die.
#Abuse #Neglect #CoerciveControl
#ChronicIllness
#PwME #MECFS
Table 6. Duration of PEM, illness course, and functioning (N = 1534). Items %(n) Length of prolonged, unpredictable recovery period 95.2 (1460) Within 24 h Between 1 and 2 days Between 3 and 6 days Between 1 week and 1 month Between 1 and 6 months Between 6 months and 1 year Between 1 and 2 years Over 2 years Crash that has never resolved 14.1 (216) 38.9 (596) 58.0 (890) 46.7 (717) 30.3 (465) 13.6 (209) 9.8 (151) 12.3 (189) 67.1 (1029)
In an international survey (n=1534) www.mdpi.com/2075-4418/9/..., 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise).
Patients & professionals should be informed of this risk.
Exertion has ruined some people's health
#MEcfs #CFS #PwME #PEM
Things I’m Missing Out On (A Few Words About Myalgic Encephalomyelitis and Loss) By KM Dunn 12 singing Santa Baby with my mother: two socialists and a tangle of lights, our voices glinting like baubles 11 chilly morning air, crisp as an apple in my lungs and the crunch of autumn underneath my feet 10 singed scent of candleflame in turnip lanterns and laughter of the children I can’t have 9 a rainy afternoon on the sofa, library books and a mug of tea, fingers turning page after page 8 sheen of sunscreen all summer long – skin cancer’s less of a risk if you can’t go outdoors 7 my granny’s birthday lunch; she’s gone now and I was too ill to visit her in the hospital 6 marching, a proud bisexual in the glittering critical mass clamouring for trans rights 5 cherry blossom in the city – even the drains filled to spilling with candy pink 4 the quick pizzicato gambol- scramble of lambs, racing at dusk in the fields 3 Tracy Chapman on the radio, sizzle of leeks in the saucepan and a pot of soup on the way 2 snowdrops and crocuses and winter branches waiting to burst into life 1 fireworks, the clink of glasses, a slick of red lipstick and the chance of a midnight kiss
Things I’m Missing Out On (A Few Words About Myalgic Encephalomyelitis and Loss)
This has actually been published in the journal PhysiOdyssey!
There is a 2-paragraph scientific statement under it.
#MEcfs #PwME
1/
IMAGE DESCRIPTION: Southend VOX Community Choir logo. ME Association logo. Heading - "The MEA Are Southend Vox Community Choir’s Charity of the year! Come along to their performance in the park: July 4th, Southend-On-Sea"
1/2: Southend Vox are a community choir based in Southend-on-Sea. Annually their members select a charity to support throughout the year with various fundraising events.
This year they chose the ME Association!
Thank you to Southend Vox for supporting us!
#MECFS #pwME #SouthendOnSea
Commentary: Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults: a short analysis of the meta-analysis — Vink and Vink-Niese "In conclusion, our analysis confirms the conclusion by NICE that the quality of CBT studies is (very) low and that CBT, irrespective of the form that is used, is not an effective treatment for ME/CFS."
2/
Commentary: Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults: a short analysis of the meta-analysis
www.frontiersin.org/journals/psy...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
New Frail and Furious logo plus the MEAction logo on red slightly swirled background. "Frail and Furious" is shown on a swath of white paint. Underneath is the text "#MillionsMissing" but the second I is the outline of a person. MEAction logo is a circle with the text #MEAction in the circle.
This #MillionsMissing, we are #FrailAndFurious!
Injustices are happening worldwide because ME is not taken with the seriousness we deserve.
Let's come together to show the world how devastating this disease is.
Join the fight: millionsmissing.org
#pwME #LongCovid #MECFS
I…slept last night 😳
Like, I woke up feeling better than when I went to bed & maybe even felt “rested” (a concept I’m intellectually familiar w/as a #pwme & #pwlc)
Maybe it’s the new sleep med, or maybe it’s a blip where I feel better then my body rips the rug out from under me the next day *squint*
We will have coordinated online actions for you to take to help us get our message out! Share YOUR story! See all the details in our toolkit: docs.google.com/document/d/1...
#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid
Does anyone in the UK know how to get LDN from Dickson Chemist's? I tried to figure this out years ago but I couldn't work it out. They're a chemist's, right? So you need to already have a prescription from a doctor, but there aren't any doctors who will give the prescription, so...? #pwME
Myalgic Encephalomyelitis Complex, acquired, multi-systemic disease MAY ICC ME AWARENESS MONTH photo of 2 dolls named Jim and Rosie As a parent of a child with M.E/CFS, I live under constant fear of the wrong person getting involved in our lives. What an awful situation it is that you have to be wary not to push too hard for help or not complain because there's a risk they could take your child
One month to go
A great opportunity to raise awareness and understanding. Also the month (and the associated awareness day/week) can be used for lobbying, fundraising, and other forms of activism.
#PwME #MyalgicEncephalomyelitis #MEcfs #CFS
