Here's the latest News in Brief (March 24 - 30), a weekly summary of ME/CFS and Long Covid news from the Science for ME forum:
https://www.s4me.info/threads/news-in-brief-march-2025.43011/#post-597543
From covid data reports on twitter:
Association between COVID-19 and the development of chronic kidney disease in patients without initial acute kidney injury.
https://www.nature.com/articles/s41598-025-96032-4
I just had a guy get angry at me for saying we’re still in a pandemic. He said it was fear mongering and “silly” to continue to take precautions.
He then went on to say his wife has Long Covid and he’s had Covid “at least 4-5 times”.
This attitude is why we’re in this mess. His own wife was disabled by Covid, and rather than adapt his behaviour he’s exposed her 4-5 additional times.
Repeat infections are devastating to those with Long Covid. Not to mention each infection does cumulative damage, and eventually you will be left disabled.
Even if you’re someone who believes it’s “just a flu”… surely you recognize people didn’t get the flu 4-5 times in a four year period? Being sick that often is an aberration, and a darn good reason to take precautions.
You know who hasn’t had COVID 4-5 times? People who are taking precautions.
Bonus tip: If you’re masking and you become infected anyways, you’ve reduced your viral load AND you’ve made sure not to infect anyone else. That’s community care & compassion and it’s worth doing.
It took me over a decade to realize I was disabled.
Internalized ableism is no joke. It can lead us to push our bodies and deny our reality.
I was a sickly child my whole life - but we didn’t discover the reasons until I turned 30. It was validating to finally have answers. A name for my conditions, explanations for why I never felt well & why my body couldn’t do what other people could.
Despite my now having validation and multiple diagnoses of chronic illness and disability - I didn’t identify as disabled. I was still working, still supporting myself…
So surely that meant I wasn’t right? I was scared of what it would mean if I said I was disabled.
Would people judge me? Think less of me? Would my non disabled friends distance themselves and would disabled people think I wasn’t “disabled enough”? I recognize now these were questions that were mainly due to my own internalized ableism.
I was worried about these things
because I didn’t understand dynamic disability.
I was also grieving my health. Even though I was sick before the diagnosis - once they had a name and no cure I had to come to terms with the fact that I was never going to get better.
I was likely the most functional I would ever be - and would probably lose function as I aged. That reality hit me like a ton of bricks and it took me a long time to reach a point of acceptance.
An injury followed by a viral infection took my remaining function away from me and left me completely housebound.
It wasn’t until a caring and compassionate doctor explained the concept of dynamic disability that I realized I WAS disabled and that I had been for many years.
This good doctor encouraged me to write about my experiences to help others - and while it took me time to become confident enough to speak out - I’m so glad I did.
The fact that I had so much fear of judgement, so much difficulty accepting reality only served to show me why we need more disability advocates. We need people telling their stories. It helps with acceptance of chronic illness & educates others on dynamic disability
If Covid has taught us anything it’s that a large number of people still see the disabled as “expendable”.
How many times have we heard “Covid is mild unless you have pre-existing conditions”. This has been the party line for the entire pandemic
Many folks don’t realize that it’s rooted in ableism. To say it’s only dangerous for those who are already sick is to say that we don’t matter. That killing or maiming us is acceptable as long as the non disabled can continue to live life as though we’ve gone back to 2019
As a result many disabled and high risk individuals have been isolating for five years. Have been quietly exited from society to protect themselves. We started to re-enter the world when high quality respirators became easily available - but even that is problematic
We get bullied from the “covid is over” crowd. They want us at home. They want us to not exist. Because we are a constant reminder of their own mortality and the fact that they are risking disability every time they get a Covid infection.
But here’s the incredible thing I’ve seen happen in the last few years. The disability community are organizing. They may be isolated at home but they’ve found community online. They’ve galvanized around inspiring leaders with strong voices and are creating a movement.
Not just for Covid caution & Long Covid but for the rights of disabled people across the world. For better access to healthcare, more inclusion and recognition of diversity and minority groups. Hashtags, campaigns and artwork have started taking off. We are getting louder
Activism is more important now than ever before, as we face existential threats due to the changing political landscape.
It’s a powerful moment for intersectionality. All of us who are marginalized can and should be working together to bring about change
It’s a scary time, but I have hope whenever I see people speaking out. Sharing stories. Refusing to go gently.
I’m glad to have finally stepped up and found my voice - and I hope that by sharing my story I play a small role in making the world safer
If you’re disabled or chronically ill (or even if you aren’t sure) and you’re afraid to speak up - please don’t be. Speak up. Reach out. Share your story. There’s an incredible community waiting for you and we will lift you up and help you find your voice.
Activism is important right now, but so is pacing. We must work to save our spoons amidst the torrent of bad news & stress we’re inundated with.
“We are a community. We carry each other through the tough times. Our love and support knows no borders, so when a group of us are hurting we all hurt”
https://www.disabledginger.com/p/spoon-saving-social-media-tips-and
I post about #chronicillness and #chronicpain every so often and I think perhaps the most frustrating people I encounter end up not being the folks who are currently able-bodied. Believe it or not it’s usually other people who have a physical #disability or are similarly #disabled.
The #ableism i get! I block and move on with my life and I hardly bat an eye. It absolutely floors me when I’ll post something that has some component of “Hey, gentle reminder that not everyone can do X, Y, and Z which is why A, B, and C are super important” and I’ll get folks who will reply with some flavor of “Well I’m disabled and I have no problem with this so therefore everyone can do this.”
Just…holy shit biscuits! You’d figure if anyone would get that everyone has different capabilities and different thresholds, it would be someone who is literally living that experience!
Whoa…I just realized that I’m literally doing the exact same thing, just from the other side. Thinking that because someone has shared an experience that they must process it a similar way. Damn…
I love that even though I’ll be 50 this year, I’m still open enough to new ideas to be comfortable with not being right all the time. I guess with what I wrote above, maybe it’s a lot like how some people that grew up being bullied say “never again” while others shrug and say “it’s not a big deal, I turned out okay.”
Well…damn! I guess instead of venting my frustrations, y’all got to hang out with me and my stream of consciousness while I worked through that little mental snarl. I guess we all just process things differently and some of us are just more compassionate than others and that’s all there is to it.
Good talk, I’m glad we had this chat.
“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.
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
My health has been especially limiting recently (peri-menopause has kicked off so many new and difficult things!)
So, this morning I am imagining that I am this person. On the shores of a loch, in the wind, cheeks cold, hair a mess, heart full.
#Photography #ChronicIllness #Perimenopause #WomensHealth #Women #LandscapePhotography #Scotland #BelieveInFilm #FilmPhotography #FilmIsNotDead.
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.
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
RFK Jr was directly asked in Long Covid research would be a priority, and he immediately pivots into vaccine injury research.
By the end of the 60 second clip, he’s calling long covid and Lyme disease “injuries”
This man is exceedingly dangerous to the chronically ill AND those who still have their health.
He’s sowing distrust in vaccines which will lead to preventable death and disability, while also trying to blame the vaccines for many chronic illness.
While vaccine injuries do happen, they’re thankfully rare.
You know what’s not rare? Long Covid. 1 in 10 will develop LC after a Covid infection, with many experts saying the number is probably closer to 1 in 5.
Measles are on the rise due to declining vaccination rates. 2-3 children will die for every 1000 measles cases, and many more will be left disabled.
Get your boosters while you still can!
Fantastic news! Long Covid research grants restored due to the efforts of advocates all over the country.
Never let anyone silence you or convince you that your voice doesn’t matter.
We all have power, and even those of us who are disabled can make a difference in our own way.
Speak up, demand accountability and work together. Change is possible!
https://thesicktimes.org/2025/03/28/update-recover-long-covid-pathobiology-grants-restored/
When your body forced you into shutdown nap mode from 6-8pm but now you can’t go to normal sleep. 
I *almost* made it through the day.
When you hear “Make America Healthy Again” ask yourself this… healthy for whom? When was America healthy?
It’s not about health. It’s about thinning the herd. Culling the weak.
It’s about assigning blame to people with chronic illness & pushing health supremacy.
It’s straight from the Nazi playbook.
“I don’t know how you do it! I could never be chronically ill!”
We didn’t get a choice. No one asked our permission. Disability just happens. It can happen to you too.
We cope because we have no choice. We can’t trade our bodies in for new ones. We can’t “try harder” our way out of it.
“Unfortunately most people can’t process the lack of choice in the matter. They genuinely believe that we either want to be this sick, or could get better if we really ‘tried’. They believe they wouldn’t be able to handle what we go through, because they’re convinced they will never NEED to handle it. They’re the exception. Chronic illness won’t happen to them”
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
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:
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
Long Covid will cost the economy trillions of dollars. The economic devastation of a mass disabling event can not be overstated.
Yet more funding has been cut, including to a project that was nearing completion.
The reason? Its a “waste of time”
The only reason to believe this is because you don’t care about Covid, you certainly don’t care about Long Covid and you’re preparing to leave the chronically ill behind.
https://cen.acs.org/policy/research-funding/NIH-cancels-RECOVER-grants-long/103/web/2025/03
RFK Jr renames HHS to AHA (Administration for Healthy America)
This video drips with eugenicist language. Clean water, safe food & a healthy environment (read “wellness camps”) won’t cure chronic illness
There’s nothing wrong with those things, but to insinuate they will “fix” the chronic disease epidemic is ableist and dangerous.
He goes on to say the real overhaul will be even bigger & improve the health of the entire nation.
Will they disappear the disabled?
![My Joints When I Use Them For Their Intended Purpose
[woman screaming]](https://files.mastodon.social/media_attachments/files/114/258/078/225/629/648/original/6f57e67ae8ab8c53.png "My Joints When I Use Them For Their Intended Purpose
[woman screaming]")
!["What do you do for fun?"
Me:
[actress smiling - forget her name - I like sweat pants and staying at home....]](https://files.mastodon.social/media_attachments/files/114/257/761/821/204/695/original/8c0878c4544c2a3b.jpg "\"What do you do for fun?\"
Me:
[actress smiling - forget her name - I like sweat pants and staying at home....]")
