mecfs

25d

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

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25d

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

(no description)

(no description)

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12d

🚨 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

#MEcfs #LongCovid #USPol

Call to Action!
Ask House Committee Members to ensure the Senate language on ME/CFS makes it through the reconciliations process.
Solve M.E. Advocacy

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7d

🧵
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

1/

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1y

#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

#MEcfs #SevereME #Art #MyalgicEncephalomyelitis

"Severe ME Artists Project 2024" is written in white on a multicolored background.

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1y

"#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

https://www.medscape.co.uk/viewarticle/long-covid-chronic-fatigue-similarities-are-uncanny-2024a1000d17

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Long COVID & Chronic Fatigue: The Similarities are Uncanny
Annie Lennon | 16 July 2024
An estimated two million people in England and Scotland were experiencing symptoms of long COVID as of March 2024, according to the Office for National Statistics. Of these, 1.5 million said the condition was adversely affecting their day-to-day activities.
As more research emerges about long COVID, some experts are noticing that its trigger factors, symptoms, and causative mechanisms overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS is characterised by severe fatigue that does not improve with rest, in addition to pain and cognitive problems. One in four patients are bed- or house-bound with severe forms of the condition, sometimes experiencing atypical seizures, and speech and swallowing difficulties.

Despite affecting around 250,000 people in the UK and around 2 million people in the European Union (EU), it is a relatively poorly funded disease research area. Increased research into long COVID is thus providing a much-needed boost to ME/CFS research.

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1y

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!

#MEcfs #LongCovid #NEISvoid #PEM #StopRestPace #Humor

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1y

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

Teach ME, Treat ME Campaign by the Numbers:

- 19 medical education events took place across the U.S. and U.K.
- 402 clinicians attended in-person events.
- 100,000 views of the Mayo Clinic Proceedings paper, with thousands of new views during the campaign!
- 421 clinicians took the Mayo CME or got credit for another CME as part of the initiative!
- Researchers and clinicians from five organizations expressed interest in ongoing med ed partnerships: Mayo Clinic, Georgetown, Emory, Brown, and University of Montreal.

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1y

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

watercolour photo of a woman with dark hair holding her head in her hands. There’s a shadow behind her and white text that reads
Pregnancy Will Likely Kill You but You May Want Babies! A look at misogyny in medicine, bodily autonomy, infertility and the struggles women face with not being trusted to make decisions for their own body. WWW.DISABLEDGINGER.COM

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355d

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

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274d

📣 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

#MEcfs #PwME #NEISvoid #Writers #Books #Giveaway

Free Giveaway!
One lucky winner will receive a free paperback copy of the book (limited to the US, UK, Germany, France, Japan, Canada and Italy) and another winner will receive a free copy of the audiobook (limited to the US and UK).

* Listen to the episode.
* Email podcast@meaction.net by December 15th with "Pillow Writers Giveaway" as the subject heading.
* Please indicate whether you'd prefer the audiobook, paperback, or either version.
* Please include your name, and if you preference is for the paperback, please list your home address so we can mail it to you if you win.

The deadline for entries is December 15th. The winners will be selected the next day.

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266d

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.

https://thesicktimes.org/2024/12/10/my-mom-was-disabled-by-me-but-i-didnt-understand-until-i-developed-long-covid-i-wrote-an-apology-letter-to-her/

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@mecfs @longcovid

#MEcfs #LongCovid #Disability

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152d

#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

#MEcfs #PwME #MEAwareness #MyalgicEncephalomyelitis #May12

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133d

🚨 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

#MEcfs #MillionsMissing #LongCovid #MEAwareness #Disability

Cartoon protest art with detailed, dark lines depicting the Statue of Liberty sinking to her crown in bright red liquid. She holds her torch high above an ocean of red next to the words "#Millions Missing SOS". Additional text says, "May 12, 2025, Protest - Washington, DC & From Home. 2025 #MillionsMissing" Artwork by Jessica Kaushansky.

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147d

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"

https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-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

#USPol #LongCovid #MEcfs #Research

Dr. W. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University, has spent more than two decades studying a debilitating chronic illness that is often misunderstood and stigmatized, known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lipkin's work faces an uncertain future after grants from the federal government were terminated last week, stripping patients with this chronic disease of one of the few sources of research endeavoring to understand their condition and find treatments, he said.

The Center for Solutions for ME/CFS is one of a few centers across the country dedicated to studying this condition, but it can no longer remain operational, Lipkin said. It was receiving funding from the National Institutes of Health, but the Trump Administration cut about $250 million in grants to Columbia, which the agency said occurred due to the university's "continued inaction in the face of persistent harassment of Jewish students.”

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119d

💙 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

I am one of the 2025 Millions Missing calling out an SOS:
Save our support systems.
Save our science.
Save our society.

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120d

🧵 "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.

1/n

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #PostCovid #PostViral #MedEd

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86d

Artist: @poorlydrawnlines

#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmunememes #fibromemes #fibromyalgia #spoonie #chronicillnesslife #funnycomics #lifecomics #fatigue #chronicfatiguesyndrome #cfs #Mecfs #sotired #tiredallthetime #alwaystired

The Goat, He Screams Like A Man

1 - goat "I am so tired"

2 - it backs up and you see that he is looking at the ocean on a hill "I am so tired all the time"

poorlydrawnlines.com

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80d

"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

#MEcfs #LongCovid #PwME #PwLC #Diagnosis #Research

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.

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56d

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)

#ChronicIllness #Fibromyalgia #MECFS

https://www.youtube.com/watch?v=z8cOuEifT9c

Edited 56d ago

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79d

"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

#MEcfs #PwME #Diagnosis #Research

The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease.

Significantly, the results were mostly unaffected by patients’ activity levels, as low activity levels can sometimes hide the biological signs of illness, experts say.

The volume and consistency of the blood differences support the long-term goal of developing a blood test to help diagnose ME/CFS, researchers say.

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58d

"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

What We Did Together:

- 187 total meetings with congressional offices

- 226 attendees from across 36 states and D.C.

- Met with 67 Senate and 120 House offices (116 Democratic, 69 Republican, 2 Independent)

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33d

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/"

1/3

@mecfs

#MEcfs #MyalgicEncephalomyelitis #PwME #DecodeME

Graphic 1 of 4.
"DecodeME: The Results" graphic. At the top in bold lettering, it says "Main Findings." Beneath this it says, "Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides."

Graphic 2 of 4.
"DecodeME: The Results" graphic. The slide says "People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population." Beneath this is an image of a DNA helix and a magnifying glass.

Graphic 3 of 4.
"DecodeME: The Results" graphic. The slide says, "These lie in many places across the genome, and do not impact just one gene." Beneath this is an image of a DNA helix next to some graphs.

Graphic 4 of 4.
"DecodeME: The Results" graphic. The slide says, "Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS." Beneath this is a blue magnifying glass with a DNA helix.

Edited 33d ago

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