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#mecfs

31 posts18 participants6 posts today
Public
Tom Kindlon

Advocating the role of trained immunity in the pathogenesis of ME/CFS: a mini review
frontiersin.org/journals/immun

Hypothesis/review. "After an acute infection, long term changes are induced by epigenetic and metabolic changes in the hematopoietic stem cell system. The descendants from these stem cells are innate myeloid cells equipped with a more proinflammatory phenotype."

#MEcfs #CFS @mecfs

FrontiersFrontiers | Advocating the role of trained immunity in the pathogenesis of ME/CFS: a mini review
Public
Broadwaybabyto

“We’ve been conditioned by society that pain is weakness. That being sick is something you can overcome by simply trying harder.”

You can’t “try harder” your way out of disability. It’s not a weakness or a moral failing.

It is one of the only minority groups you can join at any time.

Ableism forces us to hide our suffering. To smile through the pain and deliver a convincing “I’m fine”

My latest looks at what would happen if we stopped hiding, as well as ways you can support the disabled person in your life.

disabledginger.com/p/why-are-c

The Disabled Ginger · Why Are Chronically Ill People Forced to Hide Their Pain?By Broadwaybabyto
#chronicillness#disability#ableism
Public
Broadwaybabyto

Tomorrow is a gift that the chronically ill never get to receive. When you’re temporarily sick, you know that it’s going to improve. You can rest because you have the knowledge that the next day will be a little bit better. Each day there will be progress until you’re completely ‘fine’ again.

disabledginger.com/p/why-are-c

The Disabled Ginger · Why Are Chronically Ill People Forced to Hide Their Pain?By Broadwaybabyto
#chronicillness#disability#ableism
Public
Broadwaybabyto

When I started The Disabled Ginger I sent it to my friends and family … as most of us do.

I was proud that I was finally standing up for disability rights. That I was taking my pain and putting it on the page in an effort to help others. That I had found something that lit a spark inside me.

Unfortunately, many of my friends didn’t feel the same way.

My disabilities are invisible, and I had become very good at hiding them. Apparently that’s what people expected of me, as they didn’t like this “new” version of Kelly.

Almost none of my friends subscribed. What’s worse, many stopped talking to me. Or would only reply in brief texts.

It’s almost been a year since I launched, and my circle is noticeably smaller. Many people I thought I was close with haven’t reached out for nearly 6 months.

When you find your purpose and your passion, it’s an incredible feeling. Hopefully people support you.

Not everyone will. And that’s ok.

It’s painful seeing so many relationships fade away. It hurts knowing they don’t see the value in me now that I’m “officially” disabled.

As painful as it is, it’s also a perfect example of why I became an advocate. Ableism is a huge problem. Being disabled can be incredibly lonely. I wanted to give a voice to those who haven’t yet found theirs.

In the process I’ve met incredible people from all over the world who inspire me to keep going. Who give me a reason to write every day. Who remind me of the compassion, love and goodness that’s still out there.

Thank you to each and every one of you. I couldn’t do this alone.

My latest looks at the reasons we hide, and what would happen if we all decided to stop hiding and show the world the realities of chronic illness:

disabledginger.com/p/why-are-c

The Disabled Ginger · Why Are Chronically Ill People Forced to Hide Their Pain?By Broadwaybabyto
#chronicillness#longcovid#mecfs
Continued thread
Public
Mx. Luna Corbden

There's a sort of adrenal balance and that's all out of whack for me now. This is a better problem to have than the problems before I moved. Like when I'm resting, it's hard to find media that can hold my interest. Horror and cult docus are *too* exciting, and nothing else is exciting enough. I still trend towards the darker stuff (I'm watching someone do a Disco Elysium lets play right now), which keeps me in a darker headspace, but the happy unicorn pony shit just feels... empty. I haven't been able to watch a straight-up comedy that isn't gallows humor in many years, because it's supposed to be funny but I don't feel like laughing. I don't really have a video "genre" right now, games besides idle games are still out of reach and idle games have gotten boring. I start a lot of stuff and then stop it, which it's great that I can finally be spontaneous now and try things at random, but my morale takes a hit after I've skipped a couple of videos or shows. I'm doing much better at reading when I do have energy, but when I'm so tired like that, I know I won't get more than a page or two.

So rest is unfulfilling, too.

There's probably some element here we might call "depression." I don't really feel hopeless, just tired, which makes me unable to hold interest in a whole lot.

I blamed it on cognitive drain from the taxes push last week and figured it would pass by now. It will surely pass as all things do, but it's getting old.

#DarkSojourn
#Recovery2025
#MECFS

Public
Mx. Luna Corbden

I've been trying to figure out why I've been so tired lately. I had a long run of having enough energy to keep up, over the move and in the aftermath adjusting to life in the RV. This new tired is a little different, more sleepy and lethargic, not wanting to move or do anything, running out of battery after only a few minutes of effort. I feel far less stress and ongoing anxiety, just lethargy, and pain but only if I push it. My situation is stable now but won't be for long if I can't keep up.

I'm also finding I have less stomach for the trauma writing and research I'm usually involved in. Today I'm doing some editing on the Sexcommunicated appendix, relatively tame stuff considering that I read and watch about cults and have seen and experienced some horrific shit, and it's just, hard to get through even a couple of paragraphs even just about the effects on minors of LDS bishop interviews.

I'm not saying I want to go back to where I was in deep anxiety constantly, processing fresh ongoing personal traumas at a mile a minute, but I do think there are withdrawal effects from cortisol and whatever other stress hormones I was hooked on. I like not being on that shit, but do rather hate the adjustment. I hope it passes eventually. I was patient but it's been a week of this new state now, and entropy is creating new problems that need to be solved.

And I'm not sure what to do about not having the stomach for doing the reading I need to write and edit about trauma, in order to stop it happening to other people. It will probably pass. But I guess when I was feeling a certain baseline of my own stress feelings, and it's gone, then reading about it is... well it's just different.

I don't have as much stomach for horror these days, either. For many years deep in my Dark Sojourn that was the only kind of movie I could watch. Horror and documentaries about cults.

#DarkSojourn#Recovery2025#MECFS
Public
MEActNOW

💔
Just had another talk with a mom who’s kid is treated for depression with antidepressants that aren’t helping. Turns out she always crashes after she does something, has POTS symptoms and cold hand and feet and most #mecfs symptoms. 3 weeks had the same talk with another mom.

#LongCovidKids
Replied to Tom Kindlon
Public *
datum (n=1)

If your doctor, or the doctor of someone you know, is still suggesting exercise therapy for CFS or fatigue in general, that recommendation has now officially had peer review label it

Outdated and misleading content; review unsuitable for clinical decisions

cochranelibrary.com/cdsr/doi/1

the full review: hbprojecttalk.wordpress.com/20

main author mastodon.online/@hildabast h/t @tomkindlon

#MECFS#PEMS#PEM
Public
Anti. 🐘

· #LongCOVID and myalgic encephalomyelitis (#MECFS) have similarly impaired vascular function

· Long COVID prevalence is not declining

· Damage to the glymphatic system — which clears waste from the brain — and the blood-brain barrier may contribute to neurocognitive impairment in people with Long COVID

thesicktimes.org/2025/03/25/re

The Sick Times - Chronicling the Long Covid crisis · Research updates, March 25 - The Sick TimesA new study in The American Journal of Medicine found that people with Long COVID and myalgic encephalomyelitis (ME) have similarly impaired vascular function. The small study assessed the blood vessel response of 17 people with Long COVID, 17 with ME, and 17 controls. The authors concluded that the impaired endothelial function (i.e., poor functioning
#Research#COVID19
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