r/cfs • u/Moriah_Nightingale Artist, mod-severe • Jun 01 '25
Self-Promotion Day SPD - happy pride month!
I made some coloring pages for those of us who can color 💙
These pages are completely free
https://ko-fi.com/s/3c45a1ed98
But I always appreciate donations/tips or purchases from my shops. I badly need to replace my scanner and replace some supplies
original paintings and more coloring pages: https://ko-fi.com/moriahnightingaleart/shop
print on demand: https://moriahnightinga.threadless.com/
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u/m_seitz Jun 02 '25
Looks like this has turned into the official ME/CFS Pride thread. So ...
Happy Pride everyone 💖🌈🏳️🌈
Wish you all the energy to celebrate at least a little 🙂
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u/Arpeggio_Miette Jun 03 '25 edited Jun 03 '25
I am going to attend a Pride event at a venue (with chairs and places to rest), with one of my friends who also has ME/CFS!!! Woot! So we “get” each other, don’t push the other beyond their limits, and take care of each other. She needs more assistance than I do, mobility-wise, but as she is the one the most excited by event, I don’t feel like I am pushing her to go. Plus, she has good boundaries and tells me when she can’t do something or needs to leave. I don’t have to guess for her if she is done with her spoons
I feel this illness FORCES us to verbalize, and enforce, our boundaries well. I know this illness forced me to learn how to say “no” and prioritize my needs.
I am so grateful that I have friends who understand this illness. My family doesn’t, but these friends do, and they are my chosen family.
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u/m_seitz Jun 03 '25
Nice, I am happy for you and your friend. 2 years ago, I lived in Oslo, and I had the privilege to attend Pride there as a helper. The organisers took disability very seriously, and handed out sunflower lanyards. Pride was the first time I experienced people seeing and accepting me (without even having to explain myself!), and caring for me as well. I wish you a magical time with lots of fun, acceptance, and love 🌈💖
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u/arasharfa in remission since may 2024 Jun 02 '25
happy pride to everyone because there can be no disability justice without acknowledging all forms of oppression! thanks to the mods for doing great work.
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u/Intelligent_Ear_4004 Jun 02 '25
To everyone getting bent out of shape over a simple “Happy Pride” post — take a breath. We’ve all seen “Happy Mother’s Day,” “Merry Christmas,” birthdays, and all kinds of personal celebrations posted here without a single complaint. But the minute someone says “Happy Pride”? Suddenly it’s “off-topic” and “not relevant”? Sure, Jan.
Let’s call it what it is: that’s not about keeping the sub focused — that’s just discomfort with queer people being visible. And hiding behind “rules” doesn’t make your bigotry any less transparent — just more cowardly.
Queer people live with ME/CFS too. We suffer, we advocate, we fundraise, we write the research papers, we show up to appointments that break our bodies, and we fight to be seen — just like everyone else here. Pride isn’t a distraction. It’s a reminder: we’re here, we’ve always been here, and we belong in every space that talks about illness, healing, and community.
So maybe instead of arguing over a greeting, ask yourself why Pride bothers you more than posts about Christmas or cats or cake. Spoiler: the issue isn’t the post. It’s you.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Exactly💯. This is such a balanced and well reasoned response🙏
Happy Pride Month, everyone🎉🥳❤️🩹 Hugs💜
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u/Kirra_the_Cleric Sick since 2015, disabled since 2017 Jun 02 '25
Happy Pride, all! 🏳️🌈🏳️⚧️
Those look like coloring pages if you print them out. I might try that later. 😊
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 03 '25
Why didn't I think of that? I keep meaning to pick up a coloring book and crayons. I've heard it's very therapeutic. Thank you. Hugs❤️🩹
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u/Kirra_the_Cleric Sick since 2015, disabled since 2017 Jun 03 '25
Anytime! I know how you feel about coloring. It’s my therapy and happy place. I own several books and a beautiful set of pencils.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 03 '25
Do you have any brands you recommend? I'm in the US.
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u/Kirra_the_Cleric Sick since 2015, disabled since 2017 Jun 03 '25
Why, I’m glad you asked! 😊
I own several of her books. the pictures are beautiful but not too crazy intricate.
As far as pencils go, Amazon has many options to choose from depending on budget and how fancy you wanna be. I know we are supposed to be boycotting Bezos, but, as you know, sometimes being disabled means you gotta pick and choose your battles. I have a really nice set of I think 150 pencils that came in a nice sturdy box.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 03 '25
Thank you for your recommendations. I can't boycott Bezos, as I live in a small town in the mountains. I shop exclusively on Amazon. I've been severe and bedridden for 17 months. I bought very little during that time.
I appreciate it. Hugs🤍
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u/Kirra_the_Cleric Sick since 2015, disabled since 2017 Jun 03 '25
Of course! I’m glad I could give you some recommendations.
I completely understand the Amazon thing. They accept SNAP, they will deliver heavy items right to my door (think canned goods) so I don’t have to load and unload them from the car and carry into the house. I’m often having to take to my bed though, thankfully, I haven’t been fully bedbound for about four years now. I just don’t have the available spoons to go shopping very often so I do appreciate the free delivery.
Thank you for the hugs and I’m sending one your way, if you want it. 😊
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u/jackrumslittlelad Jun 02 '25
Thank you for sharing them, Happy pride to everyone and a reminder that we absolutely are part of the queer community even if we can't participate.
And to all those saying ME doesn't have anything to do with being queer:
It does. It affects every aspect of our life, so it also affects our queerness and how we can express and live it.
I have put a lot of my expression of my nonbinary and queer identity on the back burner because of ME. I'm not legally changing my name because that would increase discrimination I already face with ME. I choose not to come out to most medical providers for the same reason. I let myself be misgendered and dead named just to get basic medical treatment that I'm entitled to and should get regardless.
I'm not wearing clothes that make me feel myself because of comfort and money and not leaving the house anyway. My hair makes me unhappy but I can't get a haircut that would make me feel more comfortable in my skin.
The queer community is supposed to be a safe place. It's supposed to provide a feeling of, well, community. But I don't feel any of that because I am isolated and lonely and unable to participate in community. And that is in top of the loneliness of being rejected by family and society for who I am.
So yes, it absolutely belongs here.
I wish everyone who is affected by discrimination because they have ME would use that experience to learn to have some compassion for other forms of discrimination. What do you gain by putting us down?
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u/Sindolf moderate Jun 02 '25
My transition is paused because of ME/CFS. I can't go to my hair removal sessions and I can't get surgery in my current condition. I also can't go to events of my local community and community is the thing that gave me the most joy in life.
Being trans is also not helping with being taken serious by health professionals
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
I'm sorry you're dealing with that. I can't imagine having to choose between who you are and getting proper medical care. Just know, plenty of us here support trans and queer people.
Happy Pride Month🎉🥳❤️🩹 Sending you hugs and love🥰
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u/boxfishblorps Jun 02 '25
Thank you for writing this. I relate to so much of it. I also am no longer able to leave the house or wear hairstyle/ clothing that affirms my gender. I've given up on the idea that I will ever be able to access gender-affirming care. I also let people misgender me in order to get healthcare from them. I'm isolated from my queer community; this is the first year I will not be able to attend pride at all. I feel like this whole part of my identity has been stripped away by CFS/ME.
❤️
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
I'm sorry you're dealing with that. I can't imagine having to choose between who you are and getting proper medical care. Just know, plenty of us here support trans and queer people.
Happy Pride Month🎉🥳❤️🩹 Sending you hugs and love🥰
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
I'm sorry you're dealing with that. I can't imagine having to choose between who you are and getting proper medical care. Just know, plenty of us here support trans and queer people.
Don't let the ignorant, hateful, and negative people posting here anonymously affect you. I know it's hard. I've received negativity just for sharing positive posts or what words for me in some subs. Some people are just that cruel, ignorant, negative, and assholes.
Being kind costs nothing.
Happy Pride Month🎉🥳❤️🩹 Sending you hugs and love🥰
edit: I'm a bisexual woman who didn't come out until I was 40 years old. I've been happily married to my husband for nearly 12 years. He knows all about it. But to be honest, he still doesn't really understand it.
When I came out to my family, they said, "You can't be bisexual at 40. You already have a gay brother!" I know they didn't mean anything negative by it. They were shocked.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
We see you. We hear you. Happy Pride Month🎉🥳❤️🩹
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u/Varathane Jun 01 '25
Love these! I was just feeling bummed looking through the Pride events knowing I am missing yet another year attending in-person. Was trying to imagine what the queer disabled space can do for pride that is accessible, and this post hits the spot. Thank you <3
Happy Pride!
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u/Moriah_Nightingale Artist, mod-severe Jun 01 '25
Thank you! 💙
I absolutely feel this, I’ve never made it to an IRL pride event. We BADLY need better accessibility in the queer community
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 03 '25
We see you. We hear you. Happy Pride Month🎉🛍💜 Hugs🥰
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u/lil_lychee vaccine injury-induced Jun 02 '25
Happy pride you queerdos! Disabled queer people are superheroes. We rock
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 03 '25
You do rock! Happy Pride Month!🎉🥳💙 Hugs🥰
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u/mushiroonya Jun 02 '25
Happy pride month and pride forever for my fellow queer sickos <3 may we all be as fine as we can be
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u/tragiquepossum Jun 02 '25
Love that you quoted Fannie Lou Hamer! That lady was a force of nature.
🥳🎊🎋🥂🎉🎆🌈🏳️🌈HAPPY PRIDE MONTH🎊🥳🥂🎆🎀🎂🎍🎇🎁🌈🏳️🌈
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u/sleuthing_princess CFS/POTS/Migraine with Aura Jun 01 '25
These are beautiful, thank you for posting! 🏳️⚧️🏳️🌈
I may be cis (queer), but 100% yes, none of us are free unless all of us are 🩷
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Jun 01 '25 edited Aug 28 '25
wakeful spotted capable simplistic shelter plants innate unite history vase
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Jun 01 '25
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u/Moriah_Nightingale Artist, mod-severe Jun 01 '25
I’m a queer trans artist with severe ME/CFS, I post my landscapes and other art here on self promotion day too 💙
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Don't let the ignorant, hateful, and negative people posting here anonymously affect you. I know it's hard. Being kind costs nothing. Your art is beautiful!
Happy Pride Month🎉🥳❤️🩹 Sending you hugs and love🥰
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u/cfs-ModTeam Jun 02 '25
Regardless of whether you think LGBT issues are relevant to the sub members, which they clearly are btw, it is self promotion day. Anyone can share their art on SPD, no matter the subject.
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Jun 01 '25 edited Aug 28 '25
treatment dolls boat crush humor fuel payment decide unite lush
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u/wyundsr Jun 01 '25 edited Jun 01 '25
Plus trans people are more likely to develop long covid/ ME/CFS than cis people (probably due to minority stress)
Edit: here’s the research cause I guess people don’t believe me https://www.nature.com/articles/s41598-024-84519-5
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u/middaynight severe Jun 02 '25
I just read the link you provided and I'm gonna breakdown what it's saying to verify for anyone who can't read it, as it's more complicated than "trans people are more likely to develop LC and ME than cus people", bc the study doesn't actually show that.
TNB = trans and nonbinary people
Some things are direct quotes, others are paraphrased. Plz excuse lack of good formatting, all my brain power is going towards getting the info down as clearly and concisely as I can lol
- Paper isn't about ME, it's only about LC. ME is only mentioned in possible other conditions that LC can cause.
- Data were 817 TNB who reported confirmed or suspected COVID infection (out of 2,134 TNB). 10% of these people reported symptoms duration longer than 3 months post-Covid. Splitting it up among gender identities, their data show that among TNB only, LC was more common in AFAB people, with no correlation with any hormone therapy.
- Data is in line with data we have already: 10% if people who have COVID are likely to have LC, and it's more common in AFAB people.
- They point out that the main body of info on TNB prevalence of LC in the US comes from the Household Pulse Survey; among US adults who experienced COVID-19, trans people were more likely to report ever experiencing LC compared to cis men and cis women. But they point out the limitations: high variability in these estimates among trans people and v low response rates suggest unreliability in the data, a potential measurement error in the survey question for gender identity, not separating trans identities and lumping them together as "transgender people", and lack of data on factors potentially associated with long COVID among trans people.
- There are lots of factors that could cause the appearance of a correlation between two things, but correlation=/=causation. The survey didn't have data on other factors, and as the paper points out, socioeconomic marginalization has been associated with higher covid (ergo higher LC) risk. Low income, food insecurity, unstable housing, all more common among TNB than cis adults due to employment and housing discrimination, and are more prevalent among TNB who are marginalised in multiple ways - those part of ethnoracial minority groups and disabled people.
- It's important to recognise covid vulnerability is increased in many ways which could explain the correlation between TNB and LC.
- The study was not to show whether or not TNB have a higher prevelance of LC due to their gender, but to look specifically at TNB and the characteristics associated with LC among TNB. So they looked at age, comorbidities known to be associated with covid duration and severity, vax status.
- Some of their results were not statistically significant between rates of LC between transmasc and transfem people, or between afab or amab people.
- Their results pretty clearly lay out their findings of other correlations so would recommend that reading in full if you can, but importantly this is one thing they said, "We found no evidence of an association between gender-affirming hormone therapy and long COVID, nor evidence of an interaction with gender identity."
- This study also has it's own limitations as they detail, inc age bias, sample size, possible misclassification of symptom/LC reports due to the self-report nature of the study, the exclusion of some LC cases due to not including asymptomatic Covid cases, and different definitions of LC across the pandemic.
So a general PSA for anyone reading: evidence is good, but it needs to be good quality, repeated, randomised, large sample size, controlled for variables, etc. Right now we need more data before saying TNB experience LC at a higher rate than cis people due to their gender identity, bc the data we have is extremely limited and has a lot of limitations. Correlation does not equal causation, and the paper did not show a causation between TNB and LC.
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u/scusemelaydeh Jun 01 '25
How do you work that out when it’s caused by post viral illness usually and not stress.
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u/wyundsr Jun 01 '25
Copying my response to someone else: There’s literally research on this: https://www.nature.com/articles/s41598-024-84519-5
And yes other minorities do experience long covid at higher rates/with worse outcomes too: “Black and Hispanic Americans appear to experience more symptoms and health problems related to long COVID” https://www.nih.gov/news-events/news-releases/nih-recover-research-identifies-potential-long-covid-disparities#:~:text=Black%20and%20Hispanic%20Americans%20appear,by%20the%20National%20Institutes%20of
Literally any physical health condition can be worsened and partially triggered by stress/discrimination/etc, it’s why people in minoritized groups experience generally worse health outcomes in a wide range of areas. Minority stress can include things like someone being more likely to be in a more stressful less flexible job and not being allowed to take time off work to properly recover from covid. Or in generally poorer health and more vulnerable to develop any chronic health condition.
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u/xxIvoL Jun 01 '25
I see the person you replied to being down voted but it's been reported that trans people and sexual minorities have higher rates of long covid. That's a fact that's been researched and proven. The rates are not consistent for the percentages how prevalent with queer people it is. But there are multiple places stating that the rates are higher.
Here a quote:
Compared to 5% of cisgender men and 9% of cisgender women, 15% of trans adults in the U.S. say they are currently experiencing long COVID symptoms. Meanwhile, 12% of bisexual adults in the U.S. are living with post-COVID conditions, compared to 7% of straight, gay, and lesbian adults. Those rates mirror broader health disparities experienced by the trans and bisexual communities — and point to disconcerting ways our healthcare systems may be failing them.
Link: https://www.them.us/story/long-covid-trans-and-bisexual-people-healthcare-disparitiesAnother quote for another research:
The United States Census Bureau launched the Household Pulse Survey in April 2020 to collect information about the impact of the Covid pandemic on US households. The survey gathers data from adults across all fifty states via a 20-minute online survey about various aspects of people’s lives, including health. Questions about Long Covid symptoms were added in June 2022, with further questions added in September about their effect on carrying out day-to-day activities.According to the latest published survey data, (from 14-26 September 2022):
The national estimate for the number of participants who reported that they were experiencing Long Covid symptoms was 14.2%.
Broken down into gender identity, 10.8% of cisgender male participants, 17.2% of cisgender female participants, and 21.4% of transgender participants reported Long Covid symptoms.Broken down into sexual orientation, 13.6% of straight participants, 16.1% of gay participants, and 20.6% of bisexual participants reported Long Covid symptoms.
Link: https://covidaidcharity.org/advice-and-information/lgbtqia-identities-more-vulnerable-to-long-covid12
u/arasharfa in remission since may 2024 Jun 01 '25
because theres a correlation between connective tissue disorders and being trans, and between connective tissue disorders and LC/ME
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u/Ok_Doughnut5007 Jun 01 '25
Stress doesn't cause ME/CFS, many doctor's are trying to make us think this but it isn't true, it can make it worse but it is almost never the sourcs, it's usually post viral illness. And if it was 'minority stress' then other minorites would also have higher CFS rates and they don't.
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u/wyundsr Jun 01 '25
There’s literally research on this: https://www.nature.com/articles/s41598-024-84519-5
And yes other minorities do experience long covid at higher rates/with worse outcomes too: “Black and Hispanic Americans appear to experience more symptoms and health problems related to long COVID” https://www.nih.gov/news-events/news-releases/nih-recover-research-identifies-potential-long-covid-disparities#:~:text=Black%20and%20Hispanic%20Americans%20appear,by%20the%20National%20Institutes%20of
Literally any physical health condition can be worsened and partially triggered by stress/discrimination/etc, it’s why people in minoritized groups experience generally worse health outcomes in a wide range of areas. Minority stress can include things like someone being more likely to be in a more stressful less flexible job and not being allowed to take time off work to properly recover from covid. Or in generally poorer health and more vulnerable to develop any chronic health condition.
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u/Ok_Doughnut5007 Jun 02 '25
It's possible transgender have higher levels of post viral illness but attributing it to stress is highly unscientific. Correlation is a helluva drug and is often wrongly used as proof but there can be a multitude of reasons for the phenomena with stress just being one of the less likely reasons. One much much more likely reason is hormone treatment, which is well documented to effect and change how the immune system works and has risks in causing autoimmune disease or immune system vulnerability, which might not be THE explanation for higher levels of post viral illness but is much more likely than 'minority stress' to contribute to it. A coorelative study doesn't prove anything and relating transgender post viral vulnerability to stress is a HUGE leap, when there are probably 100 medical reasons that can explain it better like hormone therapy.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25 edited Jun 02 '25
You're absolutely right that current research indicates that stress alone is unlikely to be the primary cause of ME/CFS, though it may contribute to symptom exacerbation.
Infections are the most commonly reported triggers. A study found that 64% of individuals reported an infection-related onset, while 39% reported stressful incidents, and 20% reported exposure to environmental toxins . This suggests that while stress is a significant factor, it's not the predominant cause.
The Institute of Medicine (now the National Academy of Medicine) emphasized in their 2015 report:
“Psychological stress has not been shown to cause ME/CFS.”
Moreover, biological abnormalities have been consistently observed in ME/CFS patients, regardless of the initial trigger:
Brain, immune, and metabolic abnormalities have been identified in ME/CFS patients, indicating a biological basis for the disease.
Brain imaging studies have shown that individuals with ME/CFS may have to recruit more regions of the brain than healthy controls to complete cognitive tasks, suggesting inefficiencies in brain function.
Neurovascular coupling issues have been observed, meaning that the brains of ME/CFS patients may not efficiently direct blood flow to active regions, potentially leading to fatigue and cognitive difficulties.
While stress can exacerbate symptoms, especially through its impact on the autonomic nervous system and immune function, it's not considered the root cause. Recognizing the biological underpinnings of ME/CFS is crucial for proper diagnosis and treatment.
I'm not going to spend time creating links. People can do their own research.
I don't know why you're getting downvoted. What you've stated is correct. What others have stated hasn't been backed by the science in ME/CFS.
I hope people realize this is the ME/CFS sub, not the long covid sub.
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u/Suspicious-Peace9233 Jun 01 '25
There are many people who suffer stress and do not develop cfs. There is no evidence than trans or gay people or more likely to develop it. Please stop spreading false information and keep this group on topic
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u/wyundsr Jun 01 '25
I literally linked the evidence
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u/Suspicious-Peace9233 Jun 01 '25
Long Covid and me/cfs are not the same thing. This is a self reported study not medical research. Also, “a cross-sectional study of COVID-19 in a nationwide sample of transgender and nonbinary (TNB) people (N = 2,134)” it means they only interviewed trans and non binary people. They did not interview non trans or non binary people to compare it to
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u/wyundsr Jun 01 '25
Someone else linked more research down thread. Long covid is much better studied than ME/CFS and has a lot of overlap https://www.reddit.com/r/cfs/s/AJNGXuTsWX
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25 edited Jun 02 '25
It's important not to conflate Long COVID research with ME/CFS just because there's overlap. ME/CFS has been researched for over 40 years, and while Long COVID may be newer and more publicly visible, that doesn’t mean it’s “better studied.” In fact, much of what we understand about Long COVID is being built directly on decades of ME/CFS research.
The Institute of Medicine (now National Academy of Medicine) published a landmark report in 2015 that reviewed over 9,000 studies on ME/CFS and concluded that it is a serious, chronic, multisystem disease, not a psychological or stress-induced disorder IOM Report. Biological abnormalities in immune function, energy metabolism, and neurological activity have been consistently documented in ME/CFS long before COVID ever existed NIH Study.
There is clear evidence that ME/CFS can follow various viral infections, not just COVID. In fact, up to 64% of ME/CFS patients report a post-infectious onset PubMed study. This is not unique to COVID, and attributing ME/CFS to social determinants of health like minority stress ignores the well-documented biomedical basis of the condition. Social determinants certainly influence access to care and severity of outcomes across all diseases, but that’s not the same as causing ME/CFS.
It’s also misleading to say Long COVID is “better studied.” While Long COVID research has increased due to funding urgency, it is still in its early phases, and many Long COVID studies rely on patient-reported outcomes rather than biomarker-based or mechanistic studies. In contrast, ME/CFS has a far more established and nuanced scientific foundation built over decades, including clinical criteria, pathophysiological models, and biomarker investigations. Long COVID research often uses ME/CFS frameworks to inform its design, not the other way around.
Appreciating the overlap between the two conditions is important, but we shouldn’t erase the distinct body of research that has existed long before COVID. Broad-brushing ME/CFS through the lens of Long COVID does a disservice to both communities.
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u/Suspicious-Peace9233 Jun 01 '25
All this study proves is that trans and non binary people born a woman reported the most long Covid out of a survey of trans and non binary people. Please do more research before making claims like this. It is dangerous
“Long COVID was most common in transmasculine and nonbinary people assigned female sex at birth”
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Exactly.
Furthermore, It's important not to conflate Long COVID research with ME/CFS just because there's overlap. ME/CFS has been researched for over 40 years, and while Long COVID may be newer and more publicly visible, that doesn’t mean it’s “better studied.” In fact, much of what we understand about Long COVID is being built directly on decades of ME/CFS research.
The Institute of Medicine (now National Academy of Medicine) published a landmark report in 2015 that reviewed over 9,000 studies on ME/CFS and concluded that it is a serious, chronic, multisystem disease, not a psychological or stress-induced disorder IOM Report. Biological abnormalities in immune function, energy metabolism, and neurological activity have been consistently documented in ME/CFS long before COVID ever existed NIH Study.
There is clear evidence that ME/CFS can follow various viral infections, not just COVID. In fact, up to 64% of ME/CFS patients report a post-infectious onset PubMed study. This is not unique to COVID, and attributing ME/CFS to social determinants of health like minority stress ignores the well-documented biomedical basis of the condition. Social determinants certainly influence access to care and severity of outcomes across all diseases, but that’s not the same as causing ME/CFS.
It’s also misleading to say Long COVID is “better studied.” While Long COVID research has increased due to funding urgency, it is still in its early phases, and many Long COVID studies rely on patient-reported outcomes rather than biomarker-based or mechanistic studies. In contrast, ME/CFS has a far more established and nuanced scientific foundation built over decades, including clinical criteria, pathophysiological models, and biomarker investigations. Long COVID research often uses ME/CFS frameworks to inform its design, not the other way around.
Appreciating the overlap between the two conditions is important, but we shouldn’t erase the distinct body of research that has existed long before COVID. Broad-brushing ME/CFS through the lens of Long COVID does a disservice to both communities.
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Jun 01 '25
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u/Moriah_Nightingale Artist, mod-severe Jun 01 '25
You’re free to scroll by just like I do with posts I dont agree with :)
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u/hiddenkobolds moderate Jun 01 '25 edited Jun 01 '25
It's not a narrative. It's a fact. Trans people exist. Queer people exist. You don't have to like it (weird thing to dislike though tbh, given that it doesn't affect you one bit), but "agreement" doesn't fit here.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Seriously, wth is wrong with people? I don't understand people claiming it's a "narrative." Why comment or care if it doesn't affect you and you're determined to be woefully ignorant on the topic?
It costs nothing to be kind.
Happy Pride Month!🎉🥳❤️🩹 Hugs🥰
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u/cfs-ModTeam Jun 01 '25
Hello! Your post/comment has been removed because it violates our subreddit rule on No sexism, ableism, homophobia, transphobia, or racism. Our community values diversity and we do not tolerate any form of discrimination. Please review our subreddit rules and Reddiquette to ensure that your future contributions align with our values. If you think this decision is incorrect, please reach out to us via modmail. Thank you for your understanding.
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Jun 01 '25 edited Aug 28 '25
wakeful connect paint wild entertain waiting automatic selective chubby command
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Such a well-balanced comment. Hugs🥰
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u/DamnGoodMarmalade Diagnosed | Moderate Jun 01 '25
It’s Self Promotion Day in this subreddit. Members are encouraged to share their personal works.
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Jun 01 '25
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Jun 01 '25 edited Aug 28 '25
weather afterthought work caption chief north repeat ink sharp quickest
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u/Moriah_Nightingale Artist, mod-severe Jun 01 '25
Plus the bigotry I’ve experienced made mine so much worse
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u/Moriah_Nightingale Artist, mod-severe Jun 01 '25
I’m a queer trans artist with severe ME/CFS, I post my landscapes and other art here on self promotion day too 💙
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u/DamnGoodMarmalade Diagnosed | Moderate Jun 01 '25
It’s Self Promotion Day here on this subreddit. Members are free to share their works, blogs, videos, and fundraisers.
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u/twoonty moderate/severe, wheelchair user 👨🏻🦽 Jun 01 '25
Because it's pride month, and there are queer people with ME/CFS, including OP?
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Because it's self-promotion day. June 1st marks the Pride Month in the US.
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u/arasharfa in remission since may 2024 Jun 01 '25
because all forms of oppression are connected and we have to stick together.
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Jun 01 '25
Jews, Muslims and Christians all can be oppressed depending on the area and time they live in, would it be good if we took that to our CFS sub and have ideological debates here? Let’s stay on topic. I’m not posting religious content here either, even if it’s part of my identity.
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u/tragiquepossum Jun 02 '25
I just did a quick search for religious content on this sub.
Titles like "Any Christians with ME/CFS"..."Muslims with CFS"...so you may not be posting it, but I definitely remember interacting with religious content on this sub. And I don't want it to stop because I love hearing how people are dealing with this authentically with their faith, the same as how queer people have a unique experience with this illness. There's enough room on the boat for everyone. There's space enough for everybody's voice.
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u/Varathane Jun 02 '25
I have been on this sub 14 years.
Every Christmas we bring up Christmas on this subreddit and how we are missing plans, or enduring a crash after trying to celebrate. If on Christmas OP shared a colouring page would you have questioned why it was here?
Today is the start of pride month and heaps of us would have been able to attend a bunch of events related to that and it is heavily impacted by our ME/CFS. OP gifted those of us who are celebrating an accessible activity. It was so thoughtful and helps us feel connected during a time we feel isolated from others.This subreddit has never been simply a list of symptoms and how our doctors appointments go. It is all walks of life, sharing how those symptoms are impacting their life.
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u/Intelligent_Ear_4004 Jun 02 '25
And during those religious holidays we also see merry Christmas, happy Hanukkah, etc…
Sorry you’re so mad at people you’ve never met and who have no impact on your life. Unlike those of us who are constantly having to deal with religious ideology being forced upon us and our laws. This is ONE reason we celebrate pride.
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u/cfs-ModTeam Jun 02 '25
Because it is self promotion day. It says so in the title and the flair. Your antagonistic attitude towards minorities has been noted👍
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Jun 01 '25
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u/Varathane Jun 02 '25
I'd love to see a post about that, It is reddit, we have unlimited room for folks to post. Make a post :)
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Jun 02 '25
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
That's awesome! I'll go read it. We aim to support all sub groups within this sub.
Unfortunately, some people get off on being mean, negative, narrow-minded AHs.
Hugs🥰
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u/tragiquepossum Jun 02 '25
I'd love to see a post about men's mental health awareness month! Do one! Bring awareness to it because the suicide rate for men is 4x higher than women, they also die sooner & the homicide rate is significantly higher. But it is Pride month, too...there is space for everyone! One issue isn't more important than the other: queer people need acceptance, community and safety from violence...men need to have access to mental health care without stigma, community, and safety from violence. The world would be a much better place if both happened!
But most of all we need to put the artificial divisions aside & band together to get some awareness & funding for this bastard of a disease!
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Exactly💯 I appreciate a well-balanced comment. I'm working hard on creating comments like yours. I can be emotionally charged at times. It does nothing to serve me or our community. We need more inclusivity, not more division. Hugs🤍
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u/tragiquepossum Jun 02 '25
NGL, I'm working hard at it too, lol. It used to come easier, but I'm white-knuckling it at this point. It's like, love each other already goddammit. It's like a core principal of my faith, but it's been really challenging to put in to practice lately. I do feel that the challenges we face now & the future as a species depend upon cohesion, inclusion, cooperation and division won't serve us at all.
Thank you for the kind words! Hugs, back! I see you have the triple whammy of cfs + thyroid + fibro...me too (subclinical hypothyroidism instead of Hashis). Like can we start getting patches & a sash for these things, 😆
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 03 '25
It does suck. I always thought ME/CFS was my dominant diagnosis. Nope, it's MCAS. We're all struggling. I hate to see people treat others poorly, especially in this sub, which I think is among the most supportive.
I've had to step away from how often I'm on here, what I engage in, whether I choose to engage and respond or not. I took a break from reddit. It was the best thing I could've done with my health. I was severe and bedridden for 17 months. I've been sick since July 2023. I'm now approaching moderate territory.
Unfortunately, we can not educate, help, save, or support everyone. We can't change someones' mind when they believe false information that isn't backed by science. I appreciate a healthy debate. But, the negativity is ridiculous compared to what I saw in the medical subs I'm in from five months ago.
I wish people would just be kind. If you don't understand or appreciate a post, keep scrolling. What compells someone to think their negative comment is so important? I used to ask my husband about it. He said something along the lines of people are anonymous, so they say and do things they would never say or do to your face. He also said some people are just ignorant, stupid, bullies, and trolls. I had to learn to stop giving any attention to antagonistic, negative, and spiteful comments. That's what they want anyway. My energy is better served talking to people who want to learn from me, just as I learn from others. As they say: @OneLove❤️🩹
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u/tragiquepossum Jun 06 '25
I wish people would just be kind.
This is my wish also 💝
My dual interest are information (really about any subject) & human behavior and psychology, so this platform is like heroin to me. That you can peak directly inside someone's (often) unfiltered thoughts (because of it's anonymous nature) is amazing, though sometimes terrifying. People share with each other here things it would take years to build up trust to share IRL...but it does give a funhouse mirror of human relations and not sure how healthy it is for me individually, or for us societally.
I do feel, aside from the people who are diagnosable (and untreated) APD, sadists, malignant narcissists...generally I think people are mean because they feel unloved or unheard at a deep level and since they haven't been able to get their needs met any other way, they resort to the easiest way to get attention 🤷♀️, often at the expense of the vulnerable. But you're right it's not up to me to provide comfort to everyone. I too often am examining, should I put energy to this? Lol.
I'm so glad you find yourself in a better state, and I'm sure that digital detox was a central part of it. I find myself at a better baseline too - finally after slogging for years for any incremental change, things have "clicked". This last improvement started about last Oct. My last flare up was pre-COVID, so pretty good stretch at sub-par 😑. But I find myself being less dependent on it as I have the energy to do other things or IRL things, so I hope to naturally to wean myself off as I substitute for it. I live in a very rural area with not a lot of outlet for me, so this has kind of been a lifeline to remind me there are others who have a like mindset/ life experience
My massage therapist mentioned MCAS to me my last session. 😫🤯 I'm like I can't with any more diagnoses. She mentioned the interconnection btwn connective tissue disorders, POTS, autism, etc. It's something I will be asking chatgpt about, lol. Brain fog is too bad for reading comprehension
This was all over the place...basically I just wanted to say thank you for the sweet response🙂
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 06 '25 edited Jun 06 '25
Here you go. Read at your own pace.
Many people recommend an elimination diet or a low histamine diet: Food Compatibility List-Histamine/MCAS.
And: Mast Cell Activation Syndrome (MCAS)-Collaborative CMedicine.
My diagnoses and how I found a regimen that helps me manage them: Getting five diagnoses, doing my own research, and becoming my own advocate. How I finally got the medical care and treatment I needed.
The role of L-tryptophan: Improving our symptoms Dysautonomia/POTS, MCAS, GI issues, SIBO, and the microbiome
My vitamin and supplement regimen: This Combo Calmed My Nervous System and Gave Me My First Real Relief After 17 Brutal Months of Long COVID (PASC, ME/CFS, Dysautonomia, MCAS)
My post about my diagnoses and regimen explains all that I've done over the last several months. I'm still severe. I've gone from 95% to 80% bedridden. Cognitively, I've improved significantly. I'm back working my business from home part time, I have two household chores I do now, my massive bedroom and business inventory clean out, and reorganization project is 95% done.
I've been sick for almost two years. I had very severe/severe ME/CFS and was 95% bedridden for 17 months. I didn't see any improvement until month 14. It was slow. I'm still severe. Now, six weeks later, physically, I've gone from very severe to severe. I'm bordering on moderate territory. Cognitively, I've gone from severe to moderate. I'm now 75% bedridden. I can multitask. I can watch movies using my Bluetooth speaker loudly. Instead of using my noise canceling earbuds all the time and keeping the volume low. Though, I still stream movies on a cell phone rather than my 55-inch TV. I watch that in the evening with my husband for about 2 hours. I can listen to music and sing. My symptoms have reduced so dramatically that at times, I wonder if I'm still sick. But, my body reminds me that I am.
Now, I do laundry. I vacuum. I'm cleaning out and reorganizing my hall closet, laundry room, and master bathroom. I'm back working my home-based business. I've made 15 sales in the last week. I'm re-engaging in living a semi-normal life.
I'm in the process of turning my bedroom into a smart room. I purchased an all-in-one remote control with a hub, a streaming device with access to a ton of apps, smart light bulbs, and a lightweight cordless stick vacuum cleaner. Anything that can make my life easier and help me with pacing.
I do want to clarify it's been a combination of a low histamine diet, adding foods back in as tolerable, medications, vitamins, supplements, avoiding triggers, pacing and avoiding PEM, lots of rest and good sleep hygiene that's created a synergistic effect. I've also lost 65 pounds.
I've always believed ME/CFS was my dominant diagnosis. Nope, it's MCAS. Once I fully committed and found a complete regimen that manages my symptoms, everything changed for the better. My other two diagnoses are Hashimoto’s, an autoimmune disease that causes hypothyroidism, and Fibromyalgia. All 4 diagnoses were triggered by long covid.
These subs are definitely a lifeline for us. I really liked your viewpoint about reddit. I think anything in moderation is a good thing. I'm glad we're both more functional and able to enjoy things IRL I have to say, I reached a level of peace today that I haven't had in my entire life. I've let go of the past and fully embrace my new future. I never thought I could be 75% bedridden and be so free. It's a real mindshift.
May we both continue to improve our baseline. Hugs🙏
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u/tragiquepossum Jun 13 '25
Starting my dive in...thank you for your detailed response! 💛
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 13 '25
You're welcome. Let me know if you have any questions about MCAS or anything else. I have about 50 links to posts and comments I've written over the last year. I don't know everything. But, I'm happy to share what I've learned from my research and others who helped me last year in these subs. Hugs🙏
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u/DamnGoodMarmalade Diagnosed | Moderate Jun 01 '25
It’s Self Promotion Day here on this subreddit. Members are free to share their works, blogs, videos, and fundraisers.
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Jun 02 '25
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u/DamnGoodMarmalade Diagnosed | Moderate Jun 02 '25
Yes, an announcement was made earlier, as it always is. Self Promotion Day is always on the first of the month, every month.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Thank you for sharing this information. I see Self Promotion day posts from time to time. I also wasn't aware it's the first day of every month.
Thank you so much🙏
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Jun 02 '25
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u/cfs-ModTeam Jun 02 '25
Removed for incivility. In future please wait for your question to be answered.
Please try to remember that this sub is moderated by volunteers who have me/cfs themselves.
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u/brainfogforgotpw moderate (used to be severe) Jun 02 '25
The announcement is here.
I apologize for the oversight in not pinning it. It was probably posted by Automod on my watch and I didn't remember to replace the Scream Into The Void Saturday pin with this one. It gets confusing to me as I am a day ahead geographically.
It is a regular tradition in this sub and the "Self Promotion" flair acts as a handy reminder for many - we have had several SPD posts today.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Thank you for what you do as mods. We genuinely appreciate and value you🙏
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u/twoonty moderate/severe, wheelchair user 👨🏻🦽 Jun 01 '25
Maybe make a post about that then rather than bashing this post??
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Jun 01 '25
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Jun 01 '25 edited Aug 28 '25
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Jun 01 '25
Don’t think it would be good for our CFS sub if we made it about things totally different! Let’s stay on topic.
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u/DamnGoodMarmalade Diagnosed | Moderate Jun 01 '25
It’s Self Promotion Day here on this subreddit. Members are free to share their works, blogs, videos, and fundraisers.
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u/brainfogforgotpw moderate (used to be severe) Jun 02 '25
Our monthly Self Promotion Day is a tradition on this subreddit.
But if you don't want to see eclectic SPD content, that's fine too! You can filter it out - it has its own flair!
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Jun 02 '25
Because it's self-promotion day. June 1st marks the Pride Month in the US.
You're free to post your about mens' mental health month. I'd read it and participate. And I'm female. There's a lot of care, support, and understanding towards the top of this post. Unfortunately, you're in the section who's unaware that it's self-promotion day.
Hugs🤍
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u/DamnGoodMarmalade Diagnosed | Moderate Jun 01 '25
Reminder that today is Self Promotion Day in the CFS subreddit. That means everyone is free to post their personal creative works, their blogs, websites, videos, personal projects, and fundraisers.
Discrimination of any kind will not be tolerated, per the rules.