As many of you might have seen “disabled” “disability” “accessibility” etc are among the words being purged by the Trump admin.

This means no new grant proposals for research for example can contain these words or it won’t get funded. And that government websites (like NASA and other agencies) are being forced to remove these words.

This is a very scary time for us all, and ontop of everything, there seems to be very little recognition of the harms Trump is doing to disabled people in the media or in activist groups and such.

I know how scary and isolating this can feel. I’m putting this thread up so people can vent and share.

❤️❤️❤️

Hiya, since most illnesses have too few people who use lemmy to have a nice community, I created this community for everyone with a chronic illness.

If you want to be added as mod, please just ask!

❤️

cross-posted from: https://lemmy.world/post/53019480

I use a medication manager with two compartments for each day of the week; morning/night. What do you guys use?

cross-posted from: https://crazypeople.online/post/24556486

My usual groceries were unavailable this week, and there were no substitutes available. I can't physically go to the shops anymore. I'll probably get a family member to help me out, but it happens annoyingly often.

Anyone else seemingly generating new problems on a monthly basis?

I read somewhere that the average time before diagnosis of POTS is 5 years, and people need to see 7 different medical professionals. I'm sure CFS and Fibro and other chronic illness are similar, or even worse.

Every person I've met with chronic illness has been mistrustful of the medical system, and for good reason. They've been told their symptoms are "psychosomatic", depression, anxiety, laziness, deconditioning, etc… Gaslighting and poor treatment seems to be the norm. I wouldn't be surprised if most people in our situation have medical trauma; being defined as: "psychological or emotional symptoms associated with negative medical experiences."

I know that, personally, I hate going to doctors, especially new ones.

• I expect it to go poorly.
• I don't feel like they will believe me about my symptoms, or they will ignore what I say.
• I don't trust that they even know anything about my conditions or their treatments.
• Often the treatments given to me are actively harmful.
• If I disagree with them on anything, it turns into an argument.

The worst part is, I'm usually correct. I'm not sure you can even classify it as trauma, because that implies it's not continuing to happen. If anything, it's a wise adaptation to be wary.

You might argue that everyday family doctors aren't equipped to treat us. Often I'm treated like a hot potato, tossed between specialists because I'm nobody's problem. There is a huge gap in the medical field for knowledge about chronic health conditions. The analogy that stuck with me was: "they can set a broken bone, but they can't help my arthritis."

What do you guys think?

cross-posted from: https://aussie.zone/post/34581678

Medically concerning but also nothing

I still do, but I used to as well.

cross-posted from: https://lemmit.online/post/7866644

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/anonym5088 on 2026-02-21 10:22:35+00:00.

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It’s concerning that Wyller, a Norwegian pediatrician and ME/CFS researcher known for promoting a psychosomatic understanding of the illness, has received additional funding for psychosomatic research, including mind body reprocessing therapy.

At the same time, the Haukeland team studying daratumumab has received no direct government funding. Their pilot study showed promising results, and a new trial is now underway, largely funded by patients and their families.

That contrast speaks volumes about current research priorities.

ME/CFS patients deserve serious investment in biomedical research and potential disease modifying treatments. If you agree, please consider signing and sharing this campaign to help secure proper funding for the daratumumab study.

“How much of [long Covid] has actually disappeared due to recovery?” Osterholm asks. “How much of it has disappeared because people just stopped talking about it, tried to move on with their lives? And then how many don’t even recognize what they have? How many people are living a compromised life, but they don’t recognize why?”

This, Osterholm says, is one of the biggest challenges of long Covid: keeping people informed, especially during a time of rampant fearmongering, misinformation and politicization of the human body.

“In some ways, [the difficulty in diagnosing long Covid is] also about the concept of mental health,” he continues. “Because long-term chronic compromise leaves one to begin to wonder: how much of this is in my head?”

And when resources are stripped back from studying a disease, instead of layered on, it reinforces the idea that the disease is mild enough to be ignored, making it even more likely that people will doubt what their body is telling them.

Where Osterholm observes the state of long Covid from a bird’s eye view, Dr Lisa Sanders, medical director of Yale’s long Covid multidisciplinary care center, spends her time one-on-one with patients.

The good news, she says, is that even if individuals are still struggling to recognize their long Covid symptoms, the medical field isn’t.

These days, it doesn’t typically take long before doctors and their patients are able to start the trial-and-error process of treating symptoms. It’s hard work, often requiring multiple specialists, because long Covid often affects multiple bodily systems. It’s potentially years-long work, which is why it’s so important to start as early as possible. Because for some patients, long Covid doesn’t resolve – it hardens.

"There is a serious degree of deconditioning that comes with long Covid,” Sanders says. For some patients, “Covid comes in, whacks you, and you’re left with ME/CFS,” a debilitating variation of chronic fatigue syndrome. Other patients are left with postural orthostatic tachycardia syndrome (POTS), a condition in which your heart rate accelerates when you stand, often leading to a loss of consciousness. Others develop orthostatic hypotension, in which your resting blood pressure falls frighteningly low. Some, like me, are left with a mix of all of the above.

“So a lot of times, the patients I see are reasonably deconditioned because they have learned that when they exert themselves, they feel bad,” Sanders says.

Unfortunately, being less active further increases a person’s limitations, which can in turn exacerbate symptoms, trapping them in a cycle of physical decline.

So what do long Covid patients do?

“My advice to them is to partner with your body and figure out how you can integrate some level of activity into your daily life so that your heart and your lungs do not deteriorate,” Sanders says. She emphasizes that some level is often a very low level, otherwise patients risk pushing into post-exertional malaise, an extreme exacerbation of fatigue symptoms that can last for up to a week.

Shared by Tom Kindlon on their Mastodon account https://mastodon.ie/@[email protected]

I needed to hear this. Hope it helps someone else as well.

Got COVID for the first time in March 2025 and it's been 9 months of chronic fatigue, brain fog, hard to describe shortness of breath (not really linked with exertion, but just kinda random), repeated sinus and upper respiratory infections, very random and nonspecific inflammatory markers and just generally feeling like complete shit. Basically it's been like having a constant flu that flares up randomly and never really goes away completely.

Back and forth to the same PC and multiple specialists: respiratory therapist, allergist, rheumatologist, ENT, and even a neurologist.

Kept begging for help but was told either "I've done what I can not sure what else to do." or "Yeah those are abnormal results, but I'm not concerned because cutoff values can be arbitrary and everything is pretty non specific." Which seems like an understandable answer when you have one weird lab value that doesn't fit in with a specific diagnosis, but when you have multiple abnormal values all pointing to "something" driving chronic inflammation and fatigue for several months, it seems kinda weird to just dismiss it right?

Anyway after several doctors just treating me like I was just malingering/making shit up, I saw an ENT who couldn't help me, but did actually listen to me. He recommended I go see another allergist/immunologist who focuses more on the immunology side than allergy.

I figured it was a waste of time, but when doctors started putting in my chart that I was "refusing" to try things like CBT and physical therapy I figured what the hell, might as well give it a shot.

I went in with a folder full of paperwork ready to explain all my weird nonspecific blood work and how I know this "sounds crazy" but the only thing that seems to help me is azithromycin but not other antibiotics.

Jfc every single doctor I saw just kept telling me over and over that an antibiotic helping my symptoms made no sense, and assumed I was just saying give me an antibiotic so I can pretend it's doing something to make me feel better. When I tried to explain it was very specific to azithromycin, but not other antibiotics, and that I suspected it was maybe more due to the antiinflammatory effects of azithromycin, they usually just rolled their eyes like I was crazy and didn't know wtf I was talking about (because the truth is they didn't fucking know).

Anyway, turns out that even though allergy and immunology are the same specialty, some doctors focus more on one or the other. Before I could even go down my long winded explanation about azithromycin, this doctor interrupted me and said "yeah azithromycin is kind of a crappy antibiotic, but it has really great anti-inflammatory properties. We give it to kids with immune deficiencies all the time and it's like a night and day difference."

Then while I was just kind of sitting there with my jaw dropped that this doctor wasn't going to tell me how stupid and crazy my reality was, she skimmed over my blood work from the allergist I had seen in August, and noticed that (speaking of arbitrary lab cutoffs) my IGG subclass 1 level wasn't flagged as low, but it was sitting right at the cutoff value of 382. 95% of the population has IGG1 subclass levels equal to or higher than the value I had in August.

She then looked at my streptococcus pneumoniae antibody panel and saw most of my antibody levels were low. She told me most of my symptoms seem to line up with IGG 1 subclass deficiency, but to know for sure, I would need to retest my antibody levels after getting pneumovax to see if I could generate antibodies. She also gave me a months worth of azithromycin to take as a prophylaxis in the meantime so I could "feel like a human again." I couldn't believe I wouldn't have to go begging other doctors every time I got so sick I could barely move, only to be treated like I was making shit up and "pill seeking" a fucking antibiotic.

I literally just started crying. After 9 months of being gaslit, ignored, and dismissed, while I begged for help and kept trying to explain to doctors that I could tell something was wrong, (not to mention trying to explain my friends, family, and coworkers that, no, I wasn't just suddenly being really distant, lazy, and irresponsible), I finally had an answer from a visit for a second opinion, that was only about 20 minutes long, and that I went into assuming it would be another waste of time that just left me feeling hopeless.

I got my post vaccine blood work back today, and it definitely seems like the immunologist hit the nail on the head. I'm supposed to follow up about it soon, but if looks like my body successfully built antibodies in response to the vaccine to all of the streptococcus pneumoniae serotypes except for 23 (23F). It's still the same value (<0.3 mcg/mL) that it was back in August, and now my IGG1 subclass level has officially decreased low enough to actually be flagged as abnormal.

I don't really know where I go from here. I don't know if there is a getting better or back to my old self vs. just trying not to get sick, but I am grateful I didn't allow myself to be gaslit into believing that this was all in my head. Or that by focusing on CBT and training myself to ignore my body falling apart, I would have somehow made a miraculous recovery. Most likely I would have just felt worse about myself, and fallen further into the trap of self doubt and convincing myself when I didn't miraculously get better, it was probably because I didn't want to get better.

At that point, I'm pretty confident I would have actually been dealing with a mental health issue caused by being repeatedly gaslit and ignored while begging for help with something that other people couldn't see.

It makes me so fucking angry to know how often this kind of thing happens to people, and to know that in many ways I've actually been really lucky. I'm lucky that I only lost a little under a year of my life, that I had the resources to seek other opinions when doctors kept dismissing me, and that I actually found a few doctors among some really shitty ones, who were at least willing to just listen to me even if they didn't know how to help, instead of just defaulting to the assumption that if they couldn't figure out a diagnosis, then the symptoms were imaginary.

Fuck that. Fuck anybody that tries to discourage you from getting answers. And fuck anybody that tries to gaslight you and tell you that you aren't really experiencing or feeling what you are telling them you're experiencing and feeling.