近状の体調のご報告と、最近考えていることについてです...！
皆様いつも励ましてくださり、ありがとうございます😢
#さはらの配信 #さはらん無理しない #MECFS
mecfs
近状の体調のご報告と、最近考えていることについてです...！
皆様いつも励ましてくださり、ありがとうございます😢
#さはらの配信 #さはらん無理しない #MECFS
🚨 Call to action!
Help protect key ME/CFS language in the House Appropriations process.
The Senate included several major wins for the ME/CFS community in its FY26 funding bills. We need the House to ensure this language makes it all way through committee votes, full floor votes and the reconciliations process.
Please contact your house representative! You can use this automated toolkit to send email or call:
https://solvecfs.quorum.us/campaign/136258/
@mecfs @longcovid
🧵
I'm honoured to be recognised in this way by the Belvedere Union 😊
Screenshot of their full announcement in the next post.
[In recent years, I’ve cut back a bit from a fairly hectic level of activity but there's still plenty to do, so no plans to retire any time soon]
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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Happy to see that Violet Affleck is still doing advocacy work for Long Covid! Many thanks to The Sick Times for this story ❤️
"Violet Affleck advocates for children with Long COVID, masks, and clean indoor air at United Nations event"
“It is neglect of the highest order to look children in the eyes and say, ‘We knew how to protect you, and we didn’t do it" 💯
#COVID #LongCovid #PASC #MEcfs #CovidIsNotOver #AirQuality #MaskUp
Online event hosted by #MEAction
Discussion and Q&A with Brian Buckbee, author of We Should All Be Birds.
Wednesday, October 1st
3 pm Eastern/noon Pacific
More details here:
https://www.meaction.net/event-details/q-a-with-author-brian-buckbee
You must register in advance in order to get the Zoom link for the event.
#MEAction has announced their Severe ME Artists Project for 2024 in recognition of Severe ME Day on August 8th.
Anyone who identifies as having severe ME can participate. Artists can submit past artwork created before they got sick.
Submissions are due by July 25.
See link for full details:
https://www.meaction.net/2024/06/26/severe-me-artists-project-2024/
@mecfs
"#LongCOVID & Chronic Fatigue [Syndrome]: The Similarities are Uncanny"
Great to see this article in Medscape which includes comments from numerous UK-based researchers and charity representatives
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
I never thought I'd end up with a chronic illness where the most useful health advice comes from an old Vaudeville joke:
Patient: Doc, it hurts when I do this!
Doctor: Then don't do that!
Edited 1y ago
Update on the "Teach ME, Treat ME" medical education campaign from #MEAction :
https://www.meaction.net/2024/09/04/teachme-treatme-we-cant-believe-these-numbers/
"We tallied up some numbers from our 'Teach ME, Treat ME' campaign to educate clinicians and medical students about ME, and the results are fantastic!
The campaign has been a herculean effort by #MEAction staff and our 16 incredible teams across the U.S and U.K., and we are beyond proud!"
@mecfs @longcovid
#MEcfs #LongCovid #MedEd #CME #HealthCare #MayoClinic #TeachMeTreatME
When I was 21…I was told I was likely infertile and that pregnancy could and probably would kill me. I was denied a tubal ligation and/or hysterectomy because I “might meet a man who wants kids”.
It was a horrifying look at how deep misogyny runs in medicine - and how little women are trusted to know their own bodies and make decisions for their health.
I eventually had the hysterectomy- but only once it became an emergency because I was bleeding to death and they couldn’t stop it. The surgery was more traumatizing and dangerous because I wasn’t afforded the time to adequately prep.
I’m grateful to have survived - and sharing my story in the hopes it helps other women feel less alone. I hope it challenges doctors and healthcare workers to think differently about how they treat women and realize that not ALL of us can become mothers (and not all of us WANT to either).
At the end of the day - a man wouldn’t have had these issues if he wanted a vasectomy. He would have been trusted to know his body. He wouldn’t have been treated like an incubator and I sincerely doubt many men are asked whether they’ve considered that they could meet their “dream woman” and she might be angry about their sterility.
There’s no stigma about the childless cat man.
https://www.disabledginger.com/p/pregnancy-will-likely-kill-you-but
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #chronicillness #keepmasksinhealthcare #endometriosis #abortion #womenshealth #reproductiverights #gynecology #misogyny #infertility #childlesscatlady #bodilyautonomy
I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’
I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.
I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.
I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.
I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.
When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.
When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.
In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.
My article on how to be the best possible advocate for a disabled patient: https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms
📣 Reminder: #MEAction is giving away 2 copies (one paperback, one audiobook) of the book "Pillow Writers Anthology 1: Near-Life Experiences"
Their "Chronically Complex" podcast has extracts from the book:
https://www.meaction.net/chronically-complex-meaction-podcast/
Deadline for entry is December 15, winners will be selected the next day
I can't find an announcement on the #MEAction website but here's a link to what they posted on Bluesky:
https://bsky.app/profile/meactnet.bsky.social/post/3lbkjfa4w6c2t
@mecfs
From The Sick Times:
"My Mom was disabled by ME, but I didn’t understand until I developed Long COVID. I wrote an apology letter to her."
Jacqueline E. Luciano describes how her experience with Long COVID led her to better understand her mother’s experience with ME decades earlier. This essay is the first essay in the new the Color of Long COVID series, supported by the Disability Visibility Project.
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@mecfs @longcovid
#MillionsMissing 2025: Sending Out An SOS
Reminder: Two planning meetings for #MEAction Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow!
https://www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/
Here's how to sign up
Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration
Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration
@mecfs
Edited 173d ago
🚨 On May 12, International ME Awareness Day, #MEAction will be sending out an SOS for ME/CFS and Long Covid 🚨
SOS = Save our support systems. Save our science. Save our society.
A protest will be held at the Capitol in Washington, DC, and folks can also join in from home
#MEAction encourages all folks with disabilities to join!
More details / toolkits here:
https://www.meactions.org/millionsmissing2025
Please boost! ❤️
@mecfs @longcovid
@disability
Edited 154d ago
I think I've already posted this but it's worth re-posting:
"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
"Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS"
@mecfs @longcovid
Edit: added hashtag
Edited 168d ago
💙 It's May 12th, International ME/CFS Awareness Day 💙
My ME/CFS onset was in Jan 1990
🚨 Many recent ME/CFS cases have been triggered by COVID 🚨
In this thread I plan to post about 3 main things:
1. My ME/CFS story (briefly)
2. Helpful resources for patients and clinicians
3. Advocacy options for patients & allies (friends/family) - mostly US based
1/n
@mecfs @longcovid
#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay
🧵 "Two Households, Both Alike in Indignity: An Interview with Anne Ursu"
https://lithub.com/two-households-both-alike-in-indignity-an-interview-with-anne-ursu/
Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about "an eleven-year-old, Violet, who comes down with a post-viral illness"
I'll post a few quotes in the replies.
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@mecfs @longcovid
#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #PostCovid #PostViral #MedEd
"Simple blood test could provide first reliable diagnosis for ME"
https://www.thetimes.com/article/72d96202-0551-4c68-8c79-2ca903caf059
"Discovery of signature patterns of molecules in the blood of ME patients may signify a turning point in diagnosis, typically made by ruling out other illnesses"
@mecfs @longcovid
![Using data from the UK Biobank, they compared blood samples from 1,455 ME patients with those of more than 131,000 healthy people and identified dozens of molecules that differed in concentrations between the two, as well as different cell counts.
The changes in the ME patients, who all had mild to moderate forms of the disease, were largely related to chronic inflammation, insulin resistance and liver dysfunction. The findings were replicated in a group of American patients and healthy controls.
Professor Chris Ponting, of the university’s Institute of Genetics and Cancer, said: “For so long people with ME/CFS have been told it’s all in their head. It’s not. We see [it] in their blood.](/proxy/post_attachment/747040/dbfef65d00.png "Using data from the UK Biobank, they compared blood samples from 1,455 ME patients with those of more than 131,000 healthy people and identified dozens of molecules that differed in concentrations between the two, as well as different cell counts.
The changes in the ME patients, who all had mild to moderate forms of the disease, were largely related to chronic inflammation, insulin resistance and liver dysfunction. The findings were replicated in a group of American patients and healthy controls.
Professor Chris Ponting, of the university’s Institute of Genetics and Cancer, said: “For so long people with ME/CFS have been told it’s all in their head. It’s not. We see [it] in their blood.")
Folks with chronic health issues, I can't stress enough how much a good sun hoodie has helped me with handling summer
They're marketed toward outdoor athletes, and most of us with chronic illness are pretty outside that circle so you may have missed their awesomeness!
Here's a good video on comparisons between hoodies. I have two, one REI brand that seems to work well, and a Taema from Arcteryx that works a bit better.
(1/2)
Edited 77d ago
"Scale of how ME/CFS affects blood revealed"
https://www.ed.ac.uk/news/scale-of-how-mecfs-affects-blood-revealed
"People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness."
This is early research, not a diagnostic test yet! The wording in some articles has been misleading.
@mecfs
"Power, Progress, and Patient-Led Change"
An overiew of Advocacy Week 2025 from Solve ME:
https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/
"In a single week, the Solve M.E. community took part in 187 congressional meetings—sharing powerful personal stories, urgent data, and clear policy goals with Senate and House offices."
@mecfs @longcovid
1/n
#USPol #MEcfs #LongCovid #POTS #Congress #Senate #Advocacy #SolveME
Message from DecodeME:
"Key genetic differences found in people with ME/CFS ...
These findings reflect the lived experience of thousands of #pwME.
Thanks to all our participants & supporters who made this possible!
Read a summary of our results:
https://www.decodeme.org.uk/initial-dna-results/"
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@mecfs
Edited 54d ago