"For Some Disabled Protestors, 'Hands Off' Went Virtual"

https://www.motherjones.com/politics/2025/04/hands-off-virtual-zooms-disability-covid/

“We know we have to teach everyone how to include us"

Bateman Horne Center:

Part 2: Amy Mooney, MS, OTR/L, shares insights on managing Long COVID & ME/CFS in children.
Understanding symptoms & challenges
Breaking the “Push-Crash” cycle
Case examples & pacing tips

Watch the full presentation: https://loom.ly/44buqr8
#lckids #longcovidkids #LongCOVID #MECFS @mecfs @longcovid

People with #LongCovid or #MEcfs, how do you differentiate between PEM and a crash? Is there a qualitative or quantitative difference for you?

Please elaborate in the comments :)

@longcovid #PostCovid #cfs @mecfs

My latest article for the ME Association's ME Essential magazine, is now available online:

Gardening with ME: upon reflection https://www.gwenfarsgarden.info/2025/04/gardening-with-me-upon-reflection.html, where I reflect on what did and didn't work in the garden last year.

#GardeningWithME #MECFS #Gardening @plants @gardening

"Time to diagnosis for ME/CFS"

I'm highlighting this mainly to show how long it takes many people to get diagnosed. 5 years in my case with a huge deterioration in 5th year.

And some people sadly die without ever getting a diagnosis.

From:
https://bmjopen.bmj.com/content/15/4/e094658

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

News from #MEAction - planning for #MillionsMissing 2025 (May 12)

"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"

Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration

Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration

Details:
https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/

@mecfs

Some days, it takes until mid-afternoon for me to realize that I am still crashed from over-exertion two days ago. I just realized that in 6 hours, I have so far succeeded at

1. Getting out of bed
2. Taking morning meds
3. Making coffee and breakfast
4. Eating and drinking same
5. Typing at the world
6. Watching the finches at the feeder

#LC #LongCovid #LivingWithLongCovid @longcovid
#spoonies #MECFS

PLEASE HELP ME ESCAPE!

Please #boost and share to other platforms.I don’t have energy left (see below).

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.

Last year:
https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

Now things are worse, I’m much sicker, being neglected and will die without a safe stable #home. Doctor’s words.

If not mentioned in the article, my father is a diagnosed #narcissist with #psychopathic & #antisocial tendencies by a #psychiatrist. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other family members who lured me back through the promise of help.They didn’t help they made me progressively worse to the point of almost incapacitation at stage of #illness.

A year later:
https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/

I’ve tried every level of government, every service and they simply won’t help.

Are able help? Please ask people in real life if they have somewhere for me to go. Could they take me in (I can pay small rent)? A lot people have ‘big house, not enough money’ problem. I can help!

Is anybody an #advocate? I desperately need help.

I would be incredibly grateful for any help beyond words.

Please read articles for full information.

Thank you for reading.

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath

"Six photographs about the drudge of ME/CFS: Some recent photos from my ongoing project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome - like Long Covid" by @AndrewGiffordphotography
https://andrewgiffordphotography.substack.com/p/six-photographs-about-the-drudge

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

Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, Seltzer):

"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/

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

I’m barely holding it together. Meltdowns and shutdowns almost daily. I’ve had many extremely stressful life events over the past year, in addition to having #MECFS and #Autism, living in the U.S. where existential dread is now the norm, my partner having surgery for breast cancer tomorrow, moving to the state where my partner has been providing end of life care for her elderly mother, me being solo for 7 weeks and ending up bedridden for part of that time.

Good morning you lovely lot I am playing Upstairs Ninja again today and tomorrow thanks to Grant who is kindly getting up for the parrots again so I can rest a bit more. He has it down to a fine art now, with hardly much indignant screeching from Madame Ziggy at all this morning There is complete quiet downstairs now as breakfast is underway and soon they will all be snoozing. I will take my turn, and get some much needed Ziggy cuddles, on Thursday again. Luckily I still have cuddles in the afternoon after work.

Work was very full on yesterday and the next couple of days are looking very busy too. With my energy levels being quite low at the moment it's a wee bit of a struggle, but luckily I don't have anything physical to do. Thinking too hard can be quite tiring though so I try not to think much

Have a lovely day, whatever you get up to