#Managing ME/CFS Symptoms

[compassionmattersmost]

Optimizing Sleep for ME/CFS: Strategies for Restorative Rest and Well-being

Improving Sleep Quality for Individuals with ME/CFS Living with ME/CFS presents unique challenges, especially when it comes to achieving restorative sleep. Good sleep hygiene is essential for managing symptoms and enhancing overall well-being. Here, we explore various strategies to improve sleep quality for those with ME/CFS, including maintaining proper sleep hygiene, maximizing deep sleep,…

[tele-mesmerism]

when i got my diagnoses the cfs dx felt so secondary and less of a big deal than fibro but i wish theyd put emphasis on how much you can destroy your body permanently. but ofc they wouldnt have said that bc they were still teaching GET at the time, they were recommending treatment that wouldve damaged my body so much

[spinalogyclinicinpune]

Chronic Fatigue Syndrome

[kleinv01]

Hi everyone! I deeply apologize for disappearing, I didn't realize i didn't post an update on here yet..... Grandpa disease I have been taking a break from all activities, including game development, art commissions, etc, eversince 6th of March 2025, and this might last until June 2025. Which, explains my inactivity lately and I understand it does seems like I'm abandoning the project (Never, I love working on this game and I still have so much more to show for you guys!!) I will mostly be repeating the things I have said on my Twitter :

For those of you who aren't aware, since I also see there are many new followers here (Welcome!!) I have a condition called CFS (Chronic Fatigue Syndrome) which really affects my energy levels, on top of other chronic illnesses I have been dealing with since I was a lil kiddo. Regrettably my health has only been getting worse starting from the start of this year, and even now, just sitting on my desk for hours end had become something I physically cannot do as much as I did in the past. I'm doing all I can to manage my symptoms, so it feels a little upsetting that despite my efforts my health doesn't seem to improve as much as I'd like to. I'm looking to work around the symptoms while also finding ways how I can continue creating that matches my current capabilities and comfortability I've been slowly easing myself back into development this week. Thank you all so much for sticking with me, your support means the world and it's what keeps me going ; u ;

[sirfrogsworth]

So... when conservative dorks called me a low T, soyboy cuck, it turns out they were accurately diagnosing me.

When you have CFS and Narcolepsy fighting each other inside your body, it is very hard to detect new symptoms from alternate maladies. But I've been in bed with a huge slump for the past 8 weeks and this just seemed much more intense and my brain has been way foggier than my normal CFS amount.

So on a whim, I asked my doctor to test my testosterone. It seems it has dipped quite low. And suddenly a lot of the symptoms I've been feeling make lot more sense. The poor sleep. The poor temperature regulation that was actually hot flashes. The exhaustion and brain fog.

It looks like I'm going to be needing some gender affirming care. But for me it will be covered by insurance and in no way threatened by bigotry. But hopefully my injections will help me feel good enough to fight for *everyone* to have continued access to this.

I'm scared and anxious. I worried about why this happened. I'm worried about side effects. The last time I tried testosterone was in my 20s and I just had constant boners. I'm too old and too tired to be dealing with that. Hopefully it will just be a normal amount of boners now that I am in my 40s.

I'm trying to manage my expectations. New medicines can be helpful but they can also introduce new problems and complications. But hopefully I will start feeling a lot better as I get treatment.

[creekfiend]

back when you first talked about visible, the app/service, i bought the armband and downloaded the app bc it seemed like something that could help me manage what is in all likelihood according to every symptom pots & me/cfs (and probably some eds variation based on the amount of first and second degree relatives of mine who have it as confirmed by genetic testing). i figured having the data may even help me get diagnosed. but i wasnt gonna subscribe and use it right away because i was still smoking and it felt like doing something that bad for me would fuck up the data to the point where, why even bother collecting it, if youre trying to manage your health shouldnt you be making any effort at all to preserve it in the first place... but i couldnt let that initial investment go to waste either right. hopefully you see where this is headed, thanks for indirectly helping me quit smoking! it was really very hard to do because i genuinely love cigarettes, i chronically struggle not to give in to my worst and easiest impulses, they're becoming chic again recently (?? because of how doomed everything/one feels me included i suppose), and i guess nicotine may or may not be the most addictive substance ever or something. but it needed to be done and i did it. $20 a month now goes to app i wouldnt know about if not for your blog, instead of, big tobacco

oh wow that's amazing :o I've heard quitting smoking is really hard ... I'm happy for you anonymous!!! I hope the visible data is helping you!

[covid-safer-hotties]

Reference saved in our archive

I know some of y'all out there are all about the diagnostic/theraputic similarities between Long Covid and other autonomic disorders. Here's a preprint ya might find interesting.

Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID are persistent multi-system illnesses affecting many patients. With no known effective FDA-approved treatments for either condition, patient-reported outcomes of treatments are invaluable for guiding management strategies in patient care and generating new avenues for research. Here, we present the results of an ME/CFS and Long COVID treatment survey with responses from 3,925 patients. We assessed the experiences of these patients with more than 150 treatments, as well as their demographics, symptoms, and comorbidities. Patients with each condition who participated in the study shared similar symptom profiles, including all the core symptoms of ME/CFS, e.g., 89.7% of ME/CFS and 79.4% of Long COVID reported post-exertional malaise (PEM). Treatments with the greatest perceived benefits were identified, which had varied effects on different core symptoms. In addition, treatment responses were significantly correlated (R² = 0.68) between the two patient groups. Patient subgroups with distinct profiles of symptoms and comorbidities showed varied responses to treatments, e.g., a POTS-dominant cluster benefiting from autonomic modulators and a cognitive-dysfunction cluster from CNS stimulants. This study underscores the symptomatic and therapeutic similarities between ME/CFS and Long COVID and highlights the commonalities and nuanced complexities of infection-associated chronic diseases and related conditions. Insights from patient-reported experiences, in the absence of approved treatments, provide urgently needed real-world evidence for targeted therapies in patient care and for developing future clinical trials.

(Disclaimer: The findings presented in this paper are based on patient-reported information and are intended for research purposes only. They should not be interpreted as medical advice. Patients are advised to consult their healthcare provider before initiating or altering any treatment.)

[unveilandresist]

like I know people don't get things till they do but the extreme amount of discipline and self-denial involved in managing me/cfs...it makes me a bit exasperated that people aren't willing to be inconvenienced enough to wear a mask even for themselves.

if not doing what you want the way you want is intolerable, it is important to understand that me/cfs is one of the most common outcomes of getting covid over and over again (with asymptomatic cases, which are common, you can't know easily how many times you have had it). me/cfs requires careful energy monitoring every single day of your life, and if you fuck it up, you pay with interest.

if you do too much today, you may feel like you have the flu and may feel physocally incapable of doing shit for days, a week, a month (or more). greater severity of the illness makes it harder to bounce back, and there is never a guarantee).

me/cfs is a severe illness with no cure. on quality of life surveys, it ranked at the bottom, 'bleeding ulcers' apparently give you better quality of life.

within that severity there is still a scale from mild-severe or very severe. part of the brutality of what is taken from you with this illness is that it requires strict pacing of energy expenditure, and the amount of energy varies day to day. if you are "mild" and don't know you have me/cfs, you may crash hard over and over and become moderate to severe, permanently or semi permanently reducing your baseline. you may get better, you may not, who knows! when I say all of me/cfs is severe, I mean that:

- when you're mild you may be able to go to work, but then have no energy for exercise, leisure, seeing friends, cooking, attending events, cleaning etc. (if you are crashing into bed at the end of your workweek, you may have mild me/cfs).

- most people that are moderate are housebound or mostly housebound. before you say 'I'd love to have that freedom to stay at home', remember, even if you have the support to do so, you're at home bc you're too debilitated to do most things. simply sitting upright can be exhausting.

- people who are severe are bedbound and many can't tolerate stimulation (extreme sensitivity toward light and sound). generally people are too sick to look at screens or read. hell, i have trouble concentrating to read at moderate. some people are so sick they need feeding tubes. some people can't bathe themselves.

wearing a mask is not so much to ask. if the reason you don't is financial, I get it, but otherwise, wear kn95 or n95 masks when and where you can. before postviral illness hollows your life out. genuinely, it can happen to you and I don't want your life to become as small as mine has.

and please correct people when they disparage people with chronic fatigue syndrome or call it fake. though this post is about the hallmark symptom, post exertional malaise, it's not just about fatigue and it's one of the most brutal illnesses you could possibly face.

[toomanyacronyms]

This feels really niche, but I need to know if anyone else experiences this.

So, I've been disabled and chronically ill since I was a young child. My mom and aunts/uncles were both abusive and thought disability was a moral failing. So, I grew up being told all my struggles was because I am fat and lazy. My mom even went so far as to withhold water and tell me I was diabetic when I said I was thirsty. I spent my whole childhood and teenage years pushing down and pushing through any and all symptoms possible.

Now, I'm an adult. I still am not in touch with my body. I can't pace at all. I am constantly trying to live like an able-bodied person. I constantly tell myself that I don't need to take breaks or use aids because "I've never needed them before" even though I was 5 years old when I started wanting a wheelchair. Online, I see people who know their symptoms and their names and how to manage them. But I've spent so long being forced to shove them down that I don't think I experience those symptoms the same way anymore. I am in the process of getting diagnosed with ME/CFS and I can't relate to anything I read online about the "standard me/cfs experience".

Is there anyone else who doesn't feel symptoms the same way because you are used to it and used to working through it and ignoring it?

[yourfaveisintersex]

Sorry for a bit of vent, but I'm so damn ANGRY right now. So, thank you for you blog, I really started to question if I'm intersex, it just happened that like 90% of symptoms of PCOS lign up with what I have. And guess what? IT IS PCOS!!

But that's not the main reason why where here for, but because of my mom that always brushed off such symptoms as me just being a girl. Oh, your menstrual cycle is irregular? Well, you're just young, you started your period at 10, it will be stable in time (I'm almost 19 now, it's still just as unstable). A lot of acne on your shoulders? I also had them, but on my thighs! A lot of hair on your body, including stomach, face and chest? I'm also quite hairy! Chubby despite not eating much? You always were chubby! And many many more

So when I proposed my mom the idea that it might be PCOS, she genuinely was surprised, asking why I think this way etc etc. and guess what? After a bit of talking she goes "Well, I DO have cysts in my ovaries, had them even while I was pregnant with you😇😇😇💅✨"... Girl, WHAT

You're literally telling me this and never EVER thought of possibility of me having the same thing as you? Never ever even telling me about this?? This is messed up, I'm genuinely mad

I should thank you for helping me get curious of such stuff, maybe I would find out about this WAY later

God I empathize with your frustration so so so much. I've also seen a lot of the same story as you— family members with a heritable intersex variation like PCOS, and the older members just... don't even recognize its existence. Or that it may be atypical in the grand scheme of things, because our family is just Like That, so it MUST be normal! /sarcasm

I'm STILL pissed myself I only managed to connect the dots as late as I have, since I was always a curious and intelligent teen, still am curious and always trying to learn. But alas intersex education was HORRIBLY lacking in LGBTQ+ focused spaces besides "these people exist I guess" with no elaboration back in the 2010's (And honestly before, for that matter.) and also I just thought what was going on was a disability-only thing. Thought I had ME/CFS for a year or two until I went on T and Huzzah my extreme chronic fatigue was gone, among other bits. So now trying to figure that out and have another pelvic ultrasound on the calender currently because they couldn't image my left gonad. Could just be bowel gas in the way as said in the report, could be it's hovered somewhere else in my abdomen and that's why it couldn't be seen, maybe its a streak and they're shit at imaging it properly, or I could have unilateral agenesis. Who knows, anything's game right now.

[compassionmattersmost]

Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional…

[chronic-melon]

Having ME/CFS around Yule looks like:

• Pushing WAY past your limits to spend time with family and friends

• Leaning over to wrap gifts and coming away with sore hands, legs, back…

• Overdoing it trying to make the perfect meal

• Disappointing family when you can’t make it to every gathering or event

• Being unprepared for unexpected hardships or tragedy during the season, like family members in hospitals or a bill that will be hard to pay

• Needing to rest for several days after a gathering and likely flaring severely

• Wanting to do things with the time off but not having the energy, or sometimes even the interest

• Dealing with symptoms from eating foods outside your normal diet… and generally struggling with new textures or flavors

• Needing more help with things like washing extra dishes or handling more packages than usual, even taking out the trash more often

• Managing animals who are dysregulated from unfamiliar people, decorations, smells, and sounds

• Struggling with bright lights and loud noises, leaving gatherings with a headache

• Falling asleep when you’re sitting in the living room talking to your family (yes this happened to me)

• Leaving events early

• Misunderstanding directions or jokes due to brain fog (and in my case autism) but people not taking the time to explain, or getting ignored because there are too many people and it’s too loud

• Not giving the proper reaction to a gift because of symptoms bothering you, not being able to mask pain or fatigue and appearing ungrateful or even upset (also autism)

• The deep-seated fear of catching an infection brought by another guest, but dreading the eye roll and comments from disapproving family

• Needing to park further away from stores or restaurants due to the *hustle and bustle*

If you have more to add, please list it. It doesn’t have to be ME, it can be anything you struggle with as a disabled person around the holiday season.

[myalgicencephalomyelitiscfstom]

Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME)

1. Myth: ME is a mental health condition.

Fact: ME is a biological illness that disrupts the metabolism and impairs the brain, immune system and autonomic nervous system.

Myth: ME is just about feeling tired Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion.

3. Myth: You can exercise your way to recovery from ME.

Fact: Exercise can be dangerous for people with ME.

4. Myth Only certain groups of people can develop ME.

Fact ME affects people of all races, genders, ages, and socioeconomic backgrounds.

5. Myth: Long COVID is entirely different from ME.

Fact: Many Long COVID patients have symptoms that match ME.

6. Myth: Doctors cannot help people with ME.

Fact: Doctors can help people manage ME symptoms.

[cripplecharacters]

Hi there! I'm working on a modern supernatural story, and I've got a side character (the main character's best friend) who deals with chronic fatigue syndrome. He's a sweet, goofy, confident guy, and he has friends who are happy to change plans to accommodate him when he has flare-ups. They'll also help him out with chores or errands when he needs, with his consent. Naturally he gets bummed about his condition from time to time, but he's accepted that it's how he lives and with the help of therapy he's found ways to manage it. He also has plenty of hobbies and interests and grievances outside of his condition.

My question is this: I have a side-plot where the characters learn that a vampire has been feeding off him for weeks without his knowing, most likely using some kind of hypnotism. I'm wondering if the effects of consistent blood loss - fatigue, headaches, dizziness, etc - could reasonably be chalked up to a particularly bad CFS flare-up. Or would that be something where it's more likely he would notice the difference in severity of his symptoms and realize something else was wrong? Assuming the vampire can heal up any bite marks he leaves.

For the sake of clarity, he's had CFS most of his life and I'm taking care to avoid implying that it has anything to do with the vampire attacks. I'm just wondering if his symptoms would help hide the feedings or not.

Thank you!

The short answer: absolutely yes, this seems like it could be chalked up to a bad flare-up.

The long answer: I'm going to use the CDC's description of CFS/ME to lay out pretty exactly why it would work for both you and anyone wondering why exactly it would work.

A list of symptoms from the CDC has 3 core and 2 that you only need 1 out of 2 symptoms to have CFS.

Core: Lowered ability to do usual activities due to fatigue [that is not relieved by sleep/rest] that wouldn't have been an issue before illness

Core: Post-exertional malaise (PEM), which is a worsening of symptoms after physical or mental activity that wouldn't have been an issue before illness. Often described as a 'crash' and can include feeling dizzy, having difficulty thinking, headaches, or feeling ill. It can take days, months, or longer to recover from a crash and it's hard to predict how long a crash will last or what will cause it.

Core: Sleeping problesms; even a full night's sleep doesn't help symptoms much and might not help at all. Might have trouble falling or staying asleep.

Other: Problems with thinking and memory, like 'brain fog' or slowed thinking or trouble remembering things or paying attention.

Other: Orthostatic intolerance, meaning that symptoms can get worse while standing up. This can make people feel lightheaded, dizzy, weak or even faint.

I've bolded the symptoms on the list that match your stated symptoms of vampiric blood loss: "fatigue, headaches, dizziness, etc." and as you can see they match up pretty exactly!

Your character could perhaps do something that required a decent amount of mental or physical extertion, and perhaps it did or didn't cause a crash but at around the same time the vampire could have started to feed off of him. This might seem to prolong the 'crash' and your character might not think twice about it, just realize that they're feeling pretty miserable in a way not unknown to them.

I hope this helped!

PS, I really enjoy modern supernatural stories, and if you ever feel like sharing it I'd love to read this.

— Mod Sparrow

[sirfrogsworth]

I am exhausted.

It's hard to express how much stress just floors me.

And learning I have a serious medical issue that will require taking hormones for the rest of my days is quite stressful.

But perhaps if this works I will be able to tolerate stress a little better. It's really hard to tell what symptoms are CFS and narcolepsy and which are the low testosterone. They all kind of mix together I think. My brain fog has definitely been much worse lately. Katrina and I like to send each other little audio messages and I sent one the other day that was 10 minutes. And 5 of those minutes were just long pauses of me trying to finish a sentence. And I was cursing at myself because I knew roughly what I wanted to say but the words just would not come out of my mouth. And I rarely curse when I'm speaking. Which means I must have been super duper frustrated.

I would like to thank all of the trans folks who have been so wonderful as I have been trying to figure all of this out. They have been sharing their experiences, giving needle advice, and just comforting me about the possible side effects and benefits. I keep thinking if I was a transphobic dipshit how alone I would have been in this. I was just showered with kindness and support and I am so grateful and thankful to have this support system.

I marked my calendar for 8 weeks. That's when the effects from the T injections typically start to be noticeable. February 12th, I think. Hopefully I will be feeling better around then. Again, most folks with chronic illness know better than to get hopes up too high. So I am managing my expectations. But if I can send an audio message without 5 minutes of "uhhhhhhh...", that would be nice.

[rhube]

Finally heard someone on the radio (a registered nurse who has done PIP assessments) say that the reason more people are on PIP is simply that there are more people sick, and what they are sick with - to a large extent - is Long COVID.

This gave me the strength to write a last ditch attempt to get through to my MP on the specific point that if Labour are serious about filling the hole in their budget, and reducing the number of people who *need* PIP (as opposed to the number able to claim it - two different things) what they need to do is fund research in MEDICAL TREATMENT of Long COVID and ME/CFS.

Text of my letter below the cut. Use it as inspiration if it helps you write your own, but don't copy as duplicates will not be sent.

Use:

Dear [My MP],

I am writing to you once more on the subject of disability benefits, but this time I want to focus on the underlying cause and long-term solution: fund medical treatments for Long COVID and ME/CFS.

For the first time today I actually heard someone interview a registered nurse who actually did the assessments for PIP, and not a politician with a line to spin. And what he said reflected a reality disabled people are very familiar with, but which we have not seen reflected back to us by the political class or mainstream media at all.

Specifically, the reason he said you have more claimants now than ever before is Long COVID.

This is so blindingly obvious if you listen to disabled people, that it's severely alienating to see the majority of society pretending its a non-issue. Insisting that the pandemic is over. It's not. You can go to the World Health Organisation website and see that they have a specific web page called Pandemic Not Over: https://www.who.int/southeastasia/outbreaks-and-emergencies/covid-19/What-can-we-do-to-keep-safe/protective-measures/pandemic-not-over They are absolutely clear: we should all be continuing to mask in public, wash our hands, and maintain social distancing.

The disconnect from reality - from what all the experts agree - and what we are told by Labour and by businesses and by our friends and family who believe what they are told by people with no authority on the matter… it's really upsetting.

As someone who was one of the 'Missing Millions' with ME/CFS before COVID-19, I have watched with great sadness as one by one increasing numbers of my friends have joined my ranks. Not to mention that my own symptoms (already distressing to the point where I didn't see the point going on living) went from what's laughably called 'mild' to the borderline between moderate and severe when I caught COVID.

Five years ago I still had a full-time job, despite struggling with an illness that prevented me from doing anything outside of work for 7 years beforehand. Now I can no longer work and my rent alone has gone up £550 a month. I cannot cook. Cleaning of any kind has such a tax that I have to prioritise what tasks are the most important to be the one or two things I manage a week.

COVID-19 did this. But it seems to be a dirty word in politics. No one wants to address that the 'return to normal' is precisely why there is a giant hole in your budget.

I understand that there is an unshakeable political belief that people will not tolerate the measures recommended by the WHO that would help reduce infections. If we must take that as given (it is double-think to do so, but it seems we must) then we must also accept that a lot more people will have Long COVID.

This means that you will have an ever-increasing number of people who really cannot work, some of whom will require round the clock care.

You do not solve this issue by ceasing to support those in need. That is eugenics, not budget saving.

If you want to put a stop on the increasing black hole caused by the return to normal, you simply MUST invest in a medical cure. In treatments that are more than positive vibes and insisting that we can do things we can't. Because you CANNOT 'help us back to work'; you can only kill us by refusing us care. And there is a very high likelihood that you will become one of us. Every repeated infection (including the asymptomatic ones) increases your risk, even if you are vaccinated.

It feels like shouting into the abyss - I know how much political pressure there is to just not mention this - but Labour's ambitions for growth, which I am wholly behind, cannot be achieved unless you treat the cause of the gap in the workforce.

Pretending it doesn't exist and will go away if you take away disability benefits is not merely ghoulish, it's magical thinking.

Yours sincerely,

Dr [Rhube]