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/@tomkindlon@disabled.social

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.

cross-posted from: https://piefed.blahaj.zone/c/mentalhealth/p/507924/you-really-are

I am disabled. It's fibromyalgia.

For the last god knows how long this has been going on, I wasn't able to move. If it's not my chronic pain, then it's my depression, and when they work together, well, let's just say that one of the pastimes that has been forced upon me is just fucking existing. Like a void where the only thing you could do is feel pain, and all of the fucking physical needs that your body needs, food, water, going to the toilet, warmth, etc. Woke up today, couldn't do anything decided to go to sleep. Slept a lot, which is like, hey! I can sleep now! With the help of fucking anti depressants!!! On the other hand, now that I can sleep, I don't have the only reason that kept me functioning for so long, fucking adrenaline. The only thing that made me able to get up, walk, eat, and shit, was motherfucking adrenaline. So after I woke up, I couldn't move, was very fucking hungry, somehow managed to find the energy to make breakfast after arguing with my family, then I went back to my room, and I just laid down. Laid down for maybe 4 or 5 hours, then tried to get up and realized that oh no! I can't fucking move, apparently. And the only fucking reason that I am here, typing this, through the pain, is pure fucking rage and spite. That's how I got up. I thought of something, it made me very angry, and I jolted out of bed.

Abstract

Long COVID (LC) involves a spectrum of chronic symptoms after acute severe acute respiratory syndrome coronavirus 2 infection. Current hypotheses for the pathogenesis of LC include persistent virus, tissue damage, autoimmunity, endocrine insufficiency, immune dysfunction and complement activation. We performed immunological, virological, transcriptomic and proteomic analyses from a cohort of 142 individuals between 2020 and 2021, including uninfected controls (n = 35), acutely infected individuals (n = 54), convalescent controls (n = 24) and patients with LC (n = 28). The LC group was characterized by persistent immune activation and proinflammatory responses for more than 180 days after initial infection compared with convalescent controls, including upregulation of JAK-STAT, interleukin-6, complement, metabolism and T cell exhaustion pathways. Similar findings were observed in a second cohort enrolled between 2023 and 2024, including convalescent controls (n = 20) and patients with LC (n = 18). These data suggest that LC is characterized by persistent activation of chronic inflammatory pathways, suggesting new therapeutic targets and potential biomarkers of disease.

Discussion

In this study, we found that individuals with LC were characterized by persistent activation of chronic inflammatory pathways compared with CCs. These pathways included proinflammatory cytokine signaling, complement activation, metabolic dysregulation and immune exhaustion and persisted for more than 180 days. These findings suggest that chronic inflammation may contribute to the pathogenesis of LC and define potential new therapeutic targets.

We observed that participants with LC exhibited reduced granzyme B and cytotoxic T cell signaling and increased immune exhaustion, suggesting dysregulated cross-talk between the innate and adaptive immune responses. Our findings are consistent with prior reports that the IL-6 and JAK-STAT signaling pathways were upregulated in individuals with LC, particularly in those with cardiorespiratory or multisystem symptoms. We also found that chronic upregulation of IFNγ signaling was associated with LC and correlated with signatures of reduced T cell activation and increased T cell exhaustion, suggesting that chronic immune stimulation may lead to functional impairment of T cells. These findings are consistent with prior observations and suggest the potential role of T cell dysregulation and exhaustion in LC pathogenesis.

Our study also confirms and extends prior reports of metabolic dysregulation in LC. We observed a decrease in amino acid metabolism and an increase in corticotropin-releasing hormone signaling, leptin signaling, fatty acid metabolism, bile acid and beta-alanine metabolism in LC. Moreover, these metabolic pathways correlated with proinflammatory pathways in the LC group, suggesting a link between metabolic dysregulation and chronic inflammation. We also observed decreased activity of the telomere maintenance and DNA damage recognition and repair pathways, chromatin regulation and DNA methylation in the LC group. Impaired telomere maintenance could be associated with premature cellular senescence or apoptosis that may impede tissue repair processes.

Our study is limited by relatively small cohorts of individuals with LC who were predominantly female and with symptom clusters that primarily involved fatigue, brain fog and pain. Larger studies from more diverse populations will be required to assess the generalizability of our findings. Nevertheless, we observed good concordance between the 2020–2021 initial cohort and the 2023–2024 validation cohort. Another limitation is the use of bulk RNA-seq, which limits more detailed resolution of pathways at the cellular level. Therefore, future studies should use single-cell transcriptomic and T cell profiling technologies to provide higher-resolution data. Nevertheless, our observations suggest potential therapeutic targets for LC that could be explored in clinical trials. Because the IL-6 and JAK-STAT pathways were among the top upregulated pathways in participants with LC in both the 2020–2021 and the 2023–2024 cohorts, we have initiated a clinical trial to evaluate the therapeutic efficacy of the JAK1 inhibitor abrocitinib for LC (NCT06597396).

In conclusion, our data demonstrate that LC is characterized by chronic inflammation, immune exhaustion and metabolic dysregulation. Current therapeutic efforts are largely focused on antiviral agents to address potential residual viral replication. However, the lack of efficacy of nirmatrelvir-ritonavir in treating LC highlights the need to explore alternative therapeutic strategies. Our data suggests that the JAK-STAT and IL-6 pathways, and the IFN and metabolic pathways, are potential therapeutic targets that could be evaluated for LC.

Alt Text:

Source: ace-disgrace-on-the-case on tumblr
There’s something so uniquely terrifying about memory issues. I feel like my self is slipping away from me.
ace-disgrace-on-the-case - Here’s the thing I feel like a lot of folks don’t get: I’m not trying to forget what you said. Honestly, I really tried not to. I can’t control what I do and don’t remember—forgetting things just happens. It’s annoying for you, I know, but for me it’s distressing as hell and when you make a big deal out of it rather than just reminding me you make me feel ashamed. I’ll remember that, at least.
It costs you nothing to be kind to people with memory problems. Please. It’s scary enough without people treating memory lapses as a personal failing.

Quote is from this very depressing episode of Behind the Bastards BTW but don't remember if it was part one or part two.

The Deadliest Workplace Disaster in U.S. History

The doctor called in a prescription of promethazine to help with the nausea. Helpful but I spent most of the day sleeping and when I was awake my mouth was so dry I I could have drank an Olympic size pool of water and maybe I did.

Hello. I wasn’t sure if I should even post here, since I haven’t been diagnosed with anything yet.

About a year ago, I started having loss of sensitivity in my fingertips and toes. Since then, it has spread to my entire body. I’ve probably lost around 80% of my sense of touch everywhere, including parts I’d really rather not lose sensation in. It has affected other things too, like my sense of taste. I can no longer taste sweetness or spiciness.

I don’t have toilet urgency until I really need to go. Nothing bad has happened so far, but it’s worrying. My sense of temperature is also inconsistent. I’ve had to turn my shower five notches hotter for it to feel the same; otherwise, it legitimately feels cold. Touch is sometimes painful; my partner will lightly touch me while shifting in bed, and it’s enough to make me wince. There are other issues as well that I don’t remember.

I’ve been trying to get diagnosed for the whole year, and it has been incredibly slow. I’ve had two MRIs, one brain scan and one spine scan. The brain scan didn’t show anything. I still haven’t heard back about the spine scan because, apparently, waiting over a month to get the MRI and then another month to get the results is normal in the UK, even for an urgent case.

Two months ago, I also started having abdominal pain bad enough to keep me up at night. They tried antacids, which did nothing. Then they prescribed amitriptyline, which is the only reason I’ve been able to sleep at all, though I still don’t sleep well. They tested my blood and stool samples. The first stool sample suggested possible inflammation, so they wanted a repeat. I did the repeat, but I still haven’t heard back about that either. I ran out of painkillers and had to spend last night without them, and will have to spend tonight without them as well, since the refill arrives tomorrow.

Then, two weeks ago, I started having shortness of breath and episodes of being winded, lightheaded, and experiencing heart palpitations even while sitting still. This has been getting worse. The episodes are becoming more frequent, and my ability to do anything is diminishing quickly. Alongside the breathing issues, I’ve been getting random stabbing pains in my sides, chest, and sometimes my back, plus a constant slight pressure on my chest.

I eventually went to A&E. They took bloods, did an ECG, checked my blood pressure, and listened with a stethoscope. They found nothing. They emailed my GP requesting a 24-hour monitor in case any heart issues only show up during an episode, but of course, I haven’t been contacted about that either.

Also, the neurologist suspects whatever I have is functional. So I don’t know whether everything is related or not, but it seems like too much of a coincidence for it not to be.

I’m going to contact both neurology and my GP to ask what is going on. This last year has been terrible for my physical and mental health, worsened by countless stressors and frustrating changes. The only positive thing recently is that I finally, after two years of putting it off, got diagnosed with ADHD combined type. I’m hopeful the help I get for that will make things at least a little easier.

Please excuse the rant, I just felt the need to express my frustration to a community that might understand me at least a little bit.

Home from the hospital . My surgery went well but the pain and muscle spasms are kicking my butt 😭 doctor says rest, lots of rest.

Number 1 looks like yoga with more steps.

We all know that having a chronic illness can be difficult and depressing, so this is a thread about the silly things that have happened as a result of our illnesses and disabilities.

Please keep them silly or funny, there's enough depressing stuff on Lemmy these days 🙂

This is my particular piece of stupidity 😁

About 15 years ago I was seriously ill, several weeks in hospital including a coma and a lot of rehab. In the meantime, my wife had moved us in with my mother while work was being done on our house.

When I got home from the hospital, I was excited to get back online to catch up with my friends, so picked my computer up and ran up the stairs. I got about three steps up and literally got stuck, my legs just wouldn't move.

I had to get my wife to squeeze past me on the stairs and take my computer, while I got back down, took the computer back so that she could get down, then give it back to her to put down.

Slightly embarrassing, but always makes me laugh 😁

Everyday is a negotiation with your body to not hurt. You do what you can to lessen that pain and hope for the best. At the end of the day we have little control over it.

I'm so bored of just watching shows, but I'm kind of out of ideas of what else to do when I'm tired (usually about half the day, sometimes al day). I don't even have any one super debilitating disease, but I have like a dozen small things going on that kind of rule everything out.

Hand-to-elbow tendonitis keeps me from what I used to enjoy that doesn't require a lot brain power (drawing, gaming and sewing). I know tendonitis is supposed to resolve more or less on its own, but it's been five years and I have no reason to believe it'll go away at this point.

Socializing drains me, I have to do it in small doses.

I used to run, but I have arthritis iny knees now. I swim for exercise, but that's not relaxing at all, because the pool is sensorily overstimulating. I'm actually only supposed to do low intensity exercising for cardiovascular reasons. But I put up with it because of how much it benefits my mental health.

I also have endocrine orbitopathy, and reading often makes me too aware of the pain in my eyes. I tried audiobooks, but I have ADHD and can't keep attention at all when I'm just listening to something.

I love to hike, but I'm kinda scared to get back into it because I need to be close to a bathroom, and that's kinda putting me off.

So, what do you do to unwind? For fun? Not even necessarily looking for advice, I'd just love a chat with people who have similar struggles.

This beautiful animation that was recommended to me by Robert Thomson. It deals with disability. youtube | invidious

Mirror post on my blog

I remembered this animation yesterday, when I was writing in my journal. Here's an excerpt:

I remember now, "Orgesticulanismus"... That video has 27K views, yet it is one of the most powerful and beautiful animations ever. When I watched this, I remember being quite healthy, and I was like "that must sound really tough, I can't even imagine" yet here we are, here I. Am.

Now. There are many things in my life, that I said "will never happen to me", I dismissed these things so easily, only for them to apply to me. Like I remember hearing about LGBT people, and I was like "wow, I can't even imagine" yet here I am, this my face when I realize this:

So here I am now, and I watch this animation, and I'm like wow. I relate to this so so much. These strings that bind people, A have never felt these strings. It is only when my movement became restricted, that i started to feel them. The lower strings feel like chains to me.

When I was robbed of movement, I started to feel things I've never felt before, I started to feel the tugging and pulling of these strings, it's almost like my own body is resisting movement in all of its forms, it's like it's revolting against me, asking me to stand still, and just take in the pain.

Like the man in the video says (who is the animator's father), when you lose movement, you have to reinvent it, you have to learn how to walk, how to hug, how to fix things, you have to relearn the very basics of movement.

Now, if you're still reading this, and you haven't watched it, please do!

When the "human" or (humans) break out of these strings and start dancing, it put a smile on my face. Like I had a very grim look at the first half, and I was watching how the people change, and how they try to stand up from the chair. I related to that, oh so much. I just saw a person standing up, yet the expression of that animation, carried so much information.

And so they revolt, they break the strings, "Fuck this" they say, and they start dancing, and the dancing animation is something else, my favorite part is when that baby grows up while dancing, then becomes an astronaut and stuff, that was very cool, so cool, and so wow.

I have felt that when I listen to very cathartic metal albums. Everything hurts, but I feel the need to stand up and start dancing, and I dance, and for a couple of moments, mere minutes, I don't feel the pain, I feel free. But then my neck and shoulders start to hurt for days, I do follow standard headbanging procedure, but it still hurts.

At some point they revolt against flesh itself, and we have a skeleton dancing, and the movement of that skeleton to me, when it moves, I can hear and feel the sound of bones rubbing together. Then they revolt against their material form, and just fucking, fucking, go abstract. And the dialogue of that man comes back, and it's really, really lovely.

Please give this animation love, and send it to everyone. I already had it downloaded on 2021. (That sentence doesn't feel right.)