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The Real McCoy @rippermd41.bsky.social · 3h

BTW I say recovered* because it’s actually remission. You’ve gone into remission from #LongCovid. It can come back.

The #MECFS community knows this all too well.

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The Real McCoy @rippermd41.bsky.social · 3h

This isn’t the first person with #LongCovid I’ve seen have this response.

They want to live their life “fully.”

I honestly can’t imagine seeing how bad LC and #MECFS can get, then going “nah, I’ll risk it again. I’ll be fine.”

To each their own.

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The Real McCoy @rippermd41.bsky.social · 3h

Just saw someone say they’re fully recovered* from #LongCovid.

That’s great!

Someone with #MECFS congratulated them then cautioned that it can come back with reinfection so to take care.

They responded: they don’t want to live their life in fear so they’ll be using zero mitigations.

😶

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Reposted by The Real McCoy

vee.soy @vashetc.bsky.social · 17h

Do you all think it’s inhumane to leave people rotting in bed (literally, not metaphorically)? Im talking about people who cannot tolerate light and sound, and maybe even touch. People who can’t drink or chew on their own. For decades.

If so then you should look up Myalgic Encephalomyelitis.

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Hazie @hazie.bsky.social · 15h

“If we assume, conservatively, that it takes 12 to 15 years to develop acceptable therapeutics for Long COVID, and then another 18 years for them to reach clinical practice, people my age — and yours — will have passed before they get help. We need to accelerate this.”

The Sick Times @thesicktimes.org · 15h

A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5

A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White."

"For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

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Jess O'Thomson @jessothomson.co.uk · 1d

It cannot be made clearer.

If you continue to support the Harry Potter franchise in any way, you are directly funding the removal of trans people's human rights in the UK.

JK Rowling pledges to keep up fight against SNP trans policies

Author vows to bankroll campaigners after Scottish government fails to pay group's legal fees in Supreme Court equality case

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The Real McCoy @rippermd41.bsky.social · 1d

I’m autistic and I was trying to explain this to my autistic teen. They didn’t understand why people can be so gloom and doom about autism.

I showed them the “I Am Autism” commercial from Autism Speaks.They treat a neurotype like it’s a serial killer.

youtu.be/9UgLnWJFGHQ?...

I Am Autism commercial by Autism Speaks

YouTube video by Find Yaser

youtu.be

The Real McCoy @rippermd41.bsky.social · 1d

Realized I mostly notice the passage of time because of my supplement organizers.

When every day is the same, it’s hard to know it’s Thursday.

#MECFS #NEISvoid

Color photograph of 2 large supplement organizers. One is purple and blue (blue side isn’t visible in this photo) and one is rainbow colored. Both are empty except for Thursday and Friday. The organizers are sitting on a grayish purple sheet.

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darth™️ @darthbluesky.bsky.social · 2d

i am not saying the world has gone completely bonkers but
the world has gone absolutely completely bonkers

Danny K @dannykpolitics.bsky.social · 5d

WATCH: ‘Portland Frog’ pepper balled by ICE agents

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The Real McCoy @rippermd41.bsky.social · 2d

I learned how to protect my family from an airborne pandemic thanks to social media.

5 years in and zero infections (that we know of) so far.

Conrad Hackett @conradhackett.bsky.social · 3d

Has anything great happened in your life because of social media?

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jamelle @jamellebouie.net · 2d

i desperately want everyone involved in the destruction of USAID to have to, st the very least, answer to the american people for the suffering and misery they have caused apnews.com/article/myan...

Starving children screaming for food as US aid cuts unleash devastation and death across Myanmar

U.S. Secretary of State Marco Rubio has repeatedly said “no one has died" because of his government’s decision to gut its foreign aid program.

apnews.com

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 2d

An excellent article by Laurie Jones, executive director of @meaction-mi.bsky.social, about the difficulties that proposed Medicaid work requirements would cause the ME/CFS community.

MedPage Today @medpagetoday.com · 2d

"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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George Monbiot @georgemonbiot.bsky.social · 3d

Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...

Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour

Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...

www.benefitsandwork.co.uk

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The Real McCoy @rippermd41.bsky.social · 3d

A fun part (for me) of #MECFS is trying to pinpoint the area of my brain that’s struggling based on my symptoms.

Latest is phonemic aphasia. I unintentionally replace a word with one that sounds similar. For example “gold” when I meant to say “coal.”

Location? Possibly the external capsule.

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The Real McCoy @rippermd41.bsky.social · 3d

Forgot to tag #MedSky

Want to learn how to help your patients with #LongCovid and/or #MECFS?

Check out these monthly sessions.

I guarantee you’re seeing patients with ME/CFS.

NIH estimates for every 22 Covid infections, one will develop ME/CFS.

But the vast majority go
undiagnosed.

The Real McCoy @rippermd41.bsky.social · 3d

Their first session was today and it focused on chapter 1 of their clinical care guide for #MECFS #LongCovid and #IACC.

The sessions will review a new chapter each month.

Looks like it could be a good resource to share with your health care providers.

And yes they’re recording them.

More info 👇

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Reposted by The Real McCoy

Kelly @broadwaybabyto.bsky.social · 3d

AI data centres are gobbling up environmental resources.

Billionaires are flying around on private jets.

Endless amounts of money & resources spent on wars around the globe.

But inhalers are the real threat to the climate?

They really will blame disabled people for everything

Screenshot of a post from local 12 WKRC TV which reads “inhalers contribute significantly to global warming study finds” and then a photo of two blue inhalers

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The Real McCoy @rippermd41.bsky.social · 3d

Tip for #MECFS patients:

When evaluating new resources for healthcare providers I always read the section on PEM first.

If they can’t get PEM right I know I can’t trust the resource.

The Real McCoy @rippermd41.bsky.social · 3d

The Bateman Horne Clinical Care Guide for #MECFS #LongCovid and #IACCs is linked below.

I haven’t had the energy to read through the whole document yet, but what I read so far is solid.

Their section on PEM is the best I’ve seen.

batemanhornecenter.org/clinical-car...

batemanhornecenter.org

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The Real McCoy @rippermd41.bsky.social · 3d

Their first session was today and it focused on chapter 1 of their clinical care guide for #MECFS #LongCovid and #IACC.

The sessions will review a new chapter each month.

Looks like it could be a good resource to share with your health care providers.

And yes they’re recording them.

More info 👇

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The Real McCoy @rippermd41.bsky.social · 3d

Jaime Seltzer is an excellent resource, saw she offered to DM.

There are ways to modify work to reduce the cognitive load.

Example: I can’t read books anymore but if I listen to audiobooks at 0.75x speed, low volume, low or no light, only listening with one ear, it reduces my exertion.

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The Real McCoy @rippermd41.bsky.social · 3d

Long Covid and ME/CFS patients often find that those that rest early do better.

I have severe ME/CFS and I got here because I continued to push through my body’s warnings.

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The Real McCoy @rippermd41.bsky.social · 3d

It’s difficult but if you can, absolute rest might help.

These are pacing guides developed for ME/CFS and Long Covid. Don’t know if you’re having issues with other types of exertion besides cognitive exertion but you want to as much as possible. Then pace ie alternating activity with rest.

PACING & MANAGEMENT GUIDES | #MEAction

Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.

www.meaction.net

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The Real McCoy @rippermd41.bsky.social · 3d

Severe #MECFS is shit but it’s hard to imagine how much worse it can get.

I can risk exertion right now to distract myself from pain. Probably shouldn’t, but I can.

But with Very Severe ME there is no choice. You lie in dark silence with only your thoughts and the pain for company.

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The Real McCoy @rippermd41.bsky.social · 3d

One of the things* I hate about #MECFS is you lose the tool of distraction when it comes to pain.

Because distractions (video game, tv, book etc) cost energy.

I’m hovering at a crash. I should be lying still and doing nothing.

But I need a distraction so here I am on social media.

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The Real McCoy @rippermd41.bsky.social · 3d

Never fails. Pain is always at its worst when I need to sleep 🤦🏻‍♀️

#PsoriaticArthritis + #HSD + #CRPS + #MECFS is a shit combo.

I feel like a giant ball of pain and my entire spine is messed up 🫠

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