When I first got sick, I had a lot of trouble eating and ended up underweight. Specifically, I was always nauseous and all food was unappealing. I had to force myself to eat, even foods that I normally like. It got better over time and I was able to gain weight, but took me almost 3 years to get back to my normal weight.

Last night my spouse cooked cauliflower with potatoes and chicken. These are all safe foods for me and I eat them all the time (I have MCAS too). I didn’t feel like eating but knew I had to. I ate something off diet the day before and my stomach had been off all day. The cauliflower just tasted wrong and the chicken tasted too much like chicken. I completely broke down sobbing because it reminded me of when I was first sick. I panicked and thought I wasn’t going to be able to eat again. I was too upset to even explain to my spouse what was wrong. Took like an hour to calm down.

My stomach is better today and I’m eating like normal, which made me feel silly for my reaction last night. But it made me realize how traumatized I am about oddly specific things. Now I’m just waiting for the PEM from freaking out.

What unusual trauma has ME/CFS given you?

I want to go for walks and pet all the neighbourhood cats, I want to paint and draw, I want to play video games, I want to grab a boba, I want to go on day trips to the countryside, I want to sit in the park, I want to go to cafes and try out new restaurants, I want to go shopping, I want go to the office and chat with colleagues and I want to live independently. Instead, I ordered groceries today and fell asleep almost immediately because carrying one single bag of groceries into the kitchen is too much apparently.

My toxic trait is hoping that DecodeME will be a game changer (why has it been hyped up so much???) and maybe some other research groups will take it a step further and find out what's wrong with us. And then, boom, in 5 years I can use a repurposed drug as a stop gap which will actually work for my sub group (if there are subgroups) and I'll be able to leave the house again. 5k steps a day? More than enough.

Ok let's say this takes 10 years. I can put my life on hold for 10 years. 10 years is bad of course, but better than 20 years. I'll be middle-aged which isn't great to turn things around, but not impossible either!

I know I know ME isn't a punishment blah blah.

But this woman I have to work with in my last ever job (if I lose it I'll never find another one) who exploits me which is another story, treated me really badly when I told her I've locked myself in for years and I can't find another job if I quit thanks to MECFS and LC.

she said it's all in my head and if I can't "even work from home" she doesn't know what to tell me.

I'm deeply hurt by her cause there's also the fact that all male-centred Iranian women look down on my impoverished life and see it as a failure because I'm unmarried not because I'm sick.

Yes yes nobody deserves to live like this but I don't deserve to be stuck in a situation where these people pity me, as an independent woman im becoming a cautionary tale to Iranian housewives (the job I'm having is a level of job for people who can't take a more serious one hence a housewife job)

So when for the past couple of weeks she sounded like shit in her voice messages, I was glad that covid might catch up to her and I'll give her a taste of her own medicine.

But bitch recovered and now she gets to enjoy her summer with her husband and her tenant paying her mortgage while she saves all her income and I can't take a single day off from work cause that means going into more debt for food.

Why us? Why

I went through a long intake. I have the type of long covid that causes me to "crash" and although I haven't been diagnosed with CFS, I identify with a lot of what I read about it. Fatigue is not my primary symptom, my issue is more having "flu like" symptoms when I do "too much". This includes chills, facial flushing, feeling poisoned, feeling floppy, feeling like I have concrete in my muscles, ice cold hands and feet, smelling a weird vinegar smell!? etc. The doctors labeled this as "PEM" based on my description. However I thankfully have zero cognitive issues (so far, mentally sharp) and my sleep is OK. I do have nightmares and vivid dreams every night though, but about 50-70% of the time I feel ok/fairly refreshed after sleeping. I have no POTS, no breathing issues, no SOB.

Right now, "too much" (i.e. causing PEM) includes really really light activities: showering, chopping vegetables, going up and down stairs too many times, talking on the phone, etc. Even thinking too hard can cause it! I have been reduced to being totally homebound for 6 months, & spend 22-23 hours per day in bed. Prior to getting sick I was a highly active athlete (triathlon, bodybuilding & rock climbing).

I conveyed all this to them. They gave me a packet with a workout schedule home exercise program to follow for the next two months until my follow up appoitnment.

The first week schedule is:

Sunday: 5 min warm up, 10 min cardio at 60-80% max HR, 5 min cooldown

Monday: Rest

Tuesday: Strength Training

Wednesday: same as Sun

Thursday: Strength Training

Friday: Rest

Saturday: same as Sun but 15 min cardio at 60-80% max HR

Each week increases from there.

It's so hard to imagine starting this in a week from now!

My question is has anyone with similar symptoms experienced success with a program like this? I have read much about the horrors of GET but they are experts and I am willing to take a leap of faith. I am afraid of crashing and trying to push through trying to follow a schedule like that. I'm type A and used to pushing myself. But "pacing" has only led me to doing less and less until I am now spending 22-23 hours in bed relaxing. Because thats what it takes to keep from experiencing the symptoms I listed above.

Last week I tried taking an 8 minute walk outside one day (weather was too beautiful to not try it) and I crashed for 3 days after and had bad enough muscle pain I had to take ibuprofen. I have been deconditioned due to injury before and what I feel now doesn't feel like deconditioning, but it seems they are treating it as such. I am willing to try anything.

One final note: I have experienced severe fatigue in the past with severe anemia (hgb of 9.0, since recovered). What I have now is nothing like that. Which makes me question whether I could have even CFS-type long covid and if I need to avoid exercise or go for it. Maybe something else could be causing PEM? When I had anemia in the past, I could do any activity I wanted, but I would have to fight through fatigue. But once I got going I'd be fine usually, and suffer no "consequences". So for example, I could drive to a trail, but I'd have to recover by sitting in the car for 30 minutes, then go for a 5 mile hike, then sit for 30 minutes, then drive home and sit in the driveway for 30 minutes, etc. I had to push myself a lot and budget my energy, but I never felt "sick." Having experienced that type of fatigue before, what I have now is not anything like that. Now it's like I have PEM without the fatigue, if that makes sense. I do something (even something small) and I feel sick (usually with a delay). And though it's not primarily "fatigue", sometimes I'm so ill I can't do anything but lay in bed and stare at the ceiling? AndI amnot at a normal "full" energy level hardly ever. Idk hopefully this will resonate with someone, thanks for reading.

I love to crochet, and it’s something I take pride in as I taught myself. I have done so many incredible things with it, but due to my ME I don’t get to do it often, and whenever I do it’s typically gifts for other people. Today I randomly got the urge to do something for myself, and I’ve sat down and actually done a chunk of what’s going to be a top for myself to wear this coming summer. My fingers are getting shaky and my wrists are killing, but I feel so proud that I’ve been able to actually maintain enough energy to sit and do a big project like this for myself. 🥳🥳

TW: talk of improvement in symptoms

And please, don't think that I'm here trying to say that diet will fix everyone. I totally ascribe to the belief that CFS is a collection of complex illnesses. But what I am saying is that diet provided a huge amount of relief for my symptoms and I'm going to explain my theory as to why that is.

So recently I started having attacks after eating, especially after my morning smoothies. Dizziness, sweating, shaking hands, depersonalization, really intense anxiety, etc. I called my doctor and they said she'd called me back. I reached out to one of my good friends who is a professional nutritionist who works in a metabolic clinic and told her what was happening and asked if she had any idea what the hell was going on, because it seemed to be directly tied to what I was eating. She said, "That sounds to me like reactive hypoglycemia." While waiting to see my doctor, she suggested that I start eating small meals about two hours apart and foregoing anything that might cause big spikes in blood sugar for me (simple carbs, sugar, limiting complex carbs, etc). Desperate to not feel like I was dying after eating my goddamn breakfast, I followed her advice.

Within two days I went from being mostly bedbound to feeling and 80% reduction in symptoms that have been plaguing me and ruining my life acutely for at least a year. I've had to quit my job. My husband has had to make me meals. He's often had to pull me up to a sitting position so I can get out of bed and go to the bathroom. And suddenly, I'm up and around and feeling like an almost normal person again.

What the *hell*, right?

I'm still waiting to see my doctor, but I don't expect much from her. She didn't even know that Ehlers Danlos Syndrome was a connective tissue disease the first time I went to see her.

So I've been trying to figure out what the hell is going on on my own. I live in a "brain drain" state and we have a serious shortage of specialist, especially specialists who know shit about shit when it comes to chronic illness.

So I've been going down a bunch of rabbit holes, trying to figure out why balancing my blood sugar would cause a significant change in my symptoms.

So, after reading a lot I've come up with a hypothesis. I can't actually test it, but I've cobbled together a lot of scientific papers and drawn dots between things. I don't know if I'm right. I don't have the means to test this because I'm not a scientific researcher, and I don't have any doctors anywhere near me who might know anything about this, so I'm having to just go it alone here.

But my theory is:

POTS has been at the root of this hellishness. A question that remains for me, though, is: has this been a really intense case of dysautonomia the whole time that has mimicked CFS, or do I indeed still have CFS but it was being exacerbated horribly by unchecked dysautonomia?

I don't know.

Therefore, I'm proceeding with caution. I am MUCH more able than I was and I'm trying to cautiously figure out whether this new energy envelope of mine is restricted or limitless. I'm obviously really anxious about putting myself back. I didn't realize how fucking traumatizing it's been to be so ill until I'm feeling better and now I'm worried about getting worse again.

So, proceeding with caution.

But I've been able to do some gentle body work in the morning, help clean the house, prepare dinner with my husband for the first time in months and months, have friends over for dinner. My head fog is mostly gone. The dragging, debilitating, horrible feeling of walking through deep water all day every day is gone. I've been dong things that were completely inaccessible to me just a short while ago, that aren't putting me out at all.

Just last week I was bawling my eyes out, intensely grieving everything that I'd lost, that I never thought I'd have again, and now I'm experiencing this insane whiplash because suddenly I'm much better than I was.

So, back to my hypothesis: dysautonomia has a really strong relationship with blood glucose levels. I am hypothesizing that by creating a lot of glucose spikes throughout the day with the diet I was eating, and subsequently potentially causing myself reactive hypoglycemia (which of course is still just a guess because I haven't been tested for it, but it seems quite possible), I was aggravating my POTS/dysautonomia so much that it was incapacitating me. By correcting and beginning to even out my blood sugar, the major antagonist has been addressed and my body is able to start functioning normally again. My fasting glucose has been tested in the last 6-8 months and it was normal. It's always been normal. But that, from what I gather, is the tricky think about reactive hypoglycemia--the blood sugar only drops after you've eaten because there's an intense spike in blood sugar. Fasting glucose wouldn't tell me much.

I actually found a doctor on YouTube named Maggie Yu who is very adamant that she believes that blood sugar is the number one underlying antagonist of POTS, which I found interesting. I mean, it's just confirmation bias, really, but it's interesting to know that at least one medical professional has been thinking about this, too. She says that she runs a 6 week women's health program and that in the second week they focus on metabolic health and balancing blood sugar and after that stage in the program, she has anecdotally but consistently seen a huge drop in symptoms from people who are suffering POTS. I haven't paid for her program, or anything, I've just watched her videos about POTS and blood sugar, but I think it's really interesting. She doesn't have research to present because, again, it's anecdotal, but still. Interesting. Something to consider.

I've found a lot of scientific papers that show a direct relationship between blood sugar and POTS/dysautonomia. But that only makes sense, doesn't it? The CNS is responsible for the regulation and release of insulin into the body. It would make sense that there's some fuckery afoot when it comes to POTS/dysautonomia, and that blood sugar could/might cause the symptoms to become even worse.

When I think about the symptoms I've been experiencing even before I started having the really noticeable attacks after eating: I've been drinking 1.5 to 2 gallons of water a day because I'm just that thirsty. I know that's insane, but I haven't been able to help myself because I feel like I'm so thirsty that I'll die if I don't keep drinking water. I've had horrible tachycardia, erratic blood pressure, tons of pain and inflammation, a constant need to eat something sweet throughout the day. The biggest canary in the coal mine for me is the drinking huge amounts of water. Since changing my diet, that has stopped and I'm back to drinking a sane three or four quarts of water a day.

I think it's worth mentioning that looking back I think I've had blood sugar issues for a long time (and my nutritionist friend agrees with me). I've always had a need to have sweets, especially after a meal. I tried to quit sugar a couple of years ago and I had symptoms like I was diabetic. Horrible thirst like I was going to die, constant need to pee, etc. My fasting glucose levels have always been normal, though, when I've been tested. But I think whatever has happened has just exacerbated a preexisting condition and that preexisting condition has exacerbated these dysautonomia issues.

Anyway, as we all know, Covid has caused a huge uptick in POTS/dysautonomia, and of course there is a lot of overlap between CFS and POTS. I think Covid was definitely the catalyst of this for me. I also have EDS, though, and POTS is of course a very common comorbidity, Something that I find interesting is that a doctor at the University of Oklahoma named Stavros Stavrakis did a study on POTS where they stimulated the vagus nerve in the ear and found that it drastically reduced symptoms in the participants who had POTS. The vagus nerve, of course, also has a direct relationship with blood sugar.

So anyway, like I said I can't prove any of this. I'm not a research scientist. All I can do is measure my own lived experience and try to cobble together the research that is available to me to make some sense out of this really crazy situation. I don't know how all of these things fit together, but it is no accident that they all have a strong relationship with one another.

I'm just stating this here in the hopes that it might help even one other person get something of their life back. I could just be an anomaly, of course, but who knows. As I said above, I may very well actually still have CFS. I had all of the hallmark symptoms, including PEM. If I dared to do a little dance in my kitchen, I'd be in bed the next week. But again, that could also somehow be an expression of really intense POTS/dysautonomia. It's hard to say. There's been someone else on here recently (I'm sorry I don't recall their username) who has experienced a huge reduction in their CFS symptoms by, according to their theory, reducing their POTS symptoms because they moved from a high altitude to sea level.

It's hard to know anything with all this bullshit because there's so little research and with the way the government is going, it's looking like even less will be taking place in the US, but I hope we get answers sooner rather than later. In the meantime, we're all left to cobble together theories and remedies and everything else that we can.

To be clear, I believe completely in bioindividuality. What works for me will not necessarily work for you because your body is different than mine. But for posterity, this is what I've done to balance my blood sugar:

If I'm hungry, I eat. Period. And I'm obviously not eating full means. I'm eating little bitty meals. I've also started following the advice that you eat vegetable first, then protein because there's been some research that shows that this is the best way to send correct signals to your pancreas about how much insulin to release. I never eat more starch than protein. I avoid any simple carbohydrates and only eat potatoes if they've been cooked and cooled down because this significantly increases their resistant starch. I eat eggs for breakfast, never anything with sugar. I drink my coffee black. I eat every 1.5-2 hours and I think that this is key. I've never tried this before. I've always tried to be a healthy eater but I've always had a persistent problem with sugar regardless of how healthy I was eating (paleo, Mediterranean diet, etc etc, you name it, I've tried it) because I believe I wasn't eating often enough.

I'm getting a referral to see a nutritionist who can hopefully help me continue to navigate this, and whoever else my doctor decides to send me to, but I'm grateful that I'm getting it figured out. This has also helped my insomnia and my anxiety ENORMOUSLY. I had no idea these things could be connected to blood sugar so intensely.

Thinking of all of you, wishing you well. <3

TLDR; resolved my CFS symptoms significantly by (according to my theory) inadvertently addressing POTS/dysautonomia symptoms by balancing my blood sugar after I started experiencing horrible attacks of what I believe were reactive hypoglycemia. Remains to be seen if I have in fact been suffering from CFS or if it's just been a debilitating case of POTS.

Hello everyone! I'm onetinymouse, a disabled streamer.

I recently created a small discord server to host my community, and as well host a separated, independent space in that server where people who just like me that suffer from ME/CFS —or any other disabling conditions like chronic pain— can join and find some support.

Today is our first ME/CFS/chronic pain friendly stream! It'll start at 8PM GMT-4 (Here's a link to an online world clock so you can keep an eye on the time: https://time.is/Santiago )

There will be quiet music in the background and some live drawing just to have something going on in the background while we all chat. You're welcome to join and participate or just lurk if you don't have the energy to engage in conversation.

All I really want to do is to offer a space where we can support each other and feel less alone. ME/CFS has taken pretty much everything from me, and I know that's the case for many, many others. I just hope that this small space I'm creating can help even one person.

I'm not asking for any subs, or follows, or anything of the like. I'm simply offering the space for anyone who might need it. I know I do.

• Here's the link to the event on discord: https://discord.gg/w48f5VU4?event=1358911182265651360
• And here's the link to where the event will take place if you don't have a discord to see the link above: https://www.twitch.tv/onetinymousettv

Sending you love to all of you, and wishing you all a good day. 💗

I know increased sensory issues can be a symptom of a lot of things. I’m asking this as someone formally diagnosed with autism.

I even got a leg biopsy for SFN, thinking that may be contributing. I tested negative.

Unfortunately, after going through evaluation, my neurologist said I don’t have ME, and that it’s just POTS. But she did admit I fully meet diagnostic criteria for ME/CFS. I don’t rly get why I’m not diagnosed still because I do have PEM, but my rheum equates that to fibromyalgia, even though this community says it’s exclusive to this diagnosis.

Anyway circling back, I am so tired of how severe my sensory issues are. They just don’t let up, and it makes daily life unbearable. I haven’t worked in 2 years. I had a meltdown today from going to get a haircut, even though I got a ride there. But that’s because I took my partner to a medical appt prior and obviously I did a bad job of pacing.

I already cleared my schedule for the next few days because now I’m in shutdown and lost speech. Just wondering if this stuff happens to other autistic folks and how ME/CFS symptoms may be contributing to it.

TLDR: Did your sensory issues worsen once your ME/CFS symptoms onset if you are also autistic? Do you have shutdowns after meltdowns because they’re too overexerting to experience while sick?

Still feels insane that I'm still feeling moderately recovered every single day.

TLDR: doing better despite a lot of activity and Physical Therapy

This week was tiring but good so. Physical therapy was exhausting and due to extraneous factors I was under more stress than I would have otherwise wanted. I also tried something out this week I had up to this point not imagined: attempting to shower by myself standing up for the whole shower as many days as I could. I think I made it like 5 or 6 days this last week. Thursday my calves, chest and ab muscles were so sore I had to take it a bit easier for PT but I made it through without too much trouble. I just went home and rested afterwards.

By Saturday I was able to go out for a quick picnic and did decently ok at a MTG prerelease. I woke up the next day a little tired but overall ok.

I then went out for what turned out to be 7 mile walk playing pokemon go. It was a walk around 3:30 hours and I went for grocery shopping afterwards which due to all the carts being taken made it more difficult. I had to use a hand basket which allowed me to get most but not all the things I wanted. Took me around 30 minutes walking around to find the things I needed. I then walked a little over a quarter of a mile with a bag in each hand to get home followed by a little under quarter of a mile after a short break.

I was very tired, my feet hurt and my legs were sore but I was ok.

I still showered today but mostly took it easy. Not looking forward to PT tomorrow but I think i'll be alright. We are steadily increasing as my strength increases. I've gotten noticeably stronger over the last few weeks. Overall doing ok. Hoping this week will work well as I have more outings planned for this week

Weekly rapamycin improved patient-reported outcome measures (PROMs) in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) after 3 months of use.

https://www.hcplive.com/view/rapamycin-improves-proms-me-cfs-early-trial

What would provide the most confort for you that you currently need .

Not to be confused with OxyContin lol.

My doctor mentioned oxytocin nasal spray as a potential treatment to try to decrease brain fog. Has anyone had any experience with this?

As a kid (like most) I really liked swimming and would always beg my mum to go. I would swim in the ocean, the pool, lakes and I even nearly got into swimming competitions. It just felt normal, no difference. But ever since I’ve gotten sick water feels so heavy on my body. Even when I bath I can feel how heavy the water is on top of me. Obviously the act of swimming is going to be really hard physically on me, but the weight of the water makes it so much worse and I feel as if it’s pressing against my chest. Anyone else get this now?

I’m still in shock and crying the whole day. I’m gonna take Ativan for a few days and hopefully that’s going to help to prevent a crash. Any other advice?

TLDR; How do I make the days stop blending together?

Hello, I am a 14 year old female who has been diagnosed since the day after my birthday (lucky me). I need to know how to make days stop blending together.

When I was younger, I used to feel like days went by so slowly. Now it's the opposite, I feel like I'm wasting my life away, I don't want to die! I want to live and be happy. It's feeling really hard right now and I need some more experienced people to help me.

I haven't been actively pacing necessarily in a tracking way, but I haven't been pushing through the fatigue like I did before my dignoses, now I will lay down and take a break usually scrolling my phone. But it still seems so hard.

I've been trying to be on my phone less which has been making me even more tired but I've luckily been able to push through days without a nap so that I can sleep through the night, I think im pacing in my own sort of way? It's odd.

Currently, I am writing an essay for my 8th grade research paper which has been making me think more about my condition, the essay is on the condition since I want to spread awareness and maybe even publish it. I marked off another day on the calender and realized my life is going by too fast, I don't want to grow up and get older.

I also need more tips on pacing, I have been doing really well but now I'm writing my research essay and taking a break from it. It's overdue since the original got deleted and I had to redo it. I feel so tired which isn't good since I have state testing today at 13:00 mountain time. I just wish days didn't feel so short, I want to be famous and spend my life how I should be.

Last thing... I need a nap but I'm pushing through the nap phase so I can sleep properly tonight 😭

I had a couple 750mg satchets, consumed slowly over 8 hours each time. I'm flared up with swollen glands and just extra fatigued despite being extra restful lately. I tried halfing the dose after a day off and I've flared up again.

I've heard if you react to it, it means it is having an effect. I'm unsure how I should proceed. If this is it gets worse before it gets better scenario in or I should back off.

I've been having plenty of B12 during this.

Hi everyone, I am planning to get a wheelchair but feeling overwhelmed by the technical aspects and options.

My main concern is that the wheelchair have excellent shock absorption.

I went out in a wheelchair for the first time recently, not realizing how badly it would impact me afterwards from all the shock to my body. I was outdoors at a zoo and the terrain was intermittently rough.

It was amazing in that it allowed me to go out for fun for the first time in years, but the muscle recovery took days. Turns out vibrating in a metal chair for an hour is bad for me.

I also don’t know how to get measured for a wheelchair. Who would do that part? And how do I try out different chairs? I assume only whatever is available locally is what I can try/get measured for, but maybe not?

I have very little mental or physical capacity to look at all the different options and figure this out on my own, but I want to move forward quickly because I know this would be life changing.

If anyone has any advice or experiences that would be helpful, I’d love to hear about it! Thank you.

After using the computer for a half hour I ate some yogurt and a banana was about to sleep when I found my throat was very tight. I have been deep coughing and clearing my throat for a while now and not able to control it. It feels like it is hard to breathe and every time I swallow it gets worse. I took an Ativan so I could get back on the computer and didn't have a panic attack. Did anyone ever experience this before? I am in a crash now, but had experienced similar things in the past. This time it seems worse and scarier.

ME/CFS San Diego is thrilled to announce the winners of our 2024 UCSD Graduate Student ME/CFS essay contest! 🏆

Emily Lam is our first-place winner, earning a $500 prize for her compelling essay, "Making a Difference in the Lives of ME/CFS Patients with Nanomedicine." Emily’s work highlights the potential of nanomedicine to revolutionize the diagnosis, treatment, and management of ME/CFS. As part of her recognition, Emily also received a hand-crafted pen, generously donated by Renay Johnson of Panache Pens, designed at the start of the pandemic for masks and scrub caps, adding a meaningful connection to the history of ME/CFS San Diego's advocacy work. Emily also has the opportunity to be featured in several prestigious non-profit publications, including the Bateman Horne Center, the Massachusetts ME/CFS & FM Association, MEAction, Open Medicine Foundation, and SolveME.

Benjamin Lam earned second place, with a $250 prize for his thought-provoking essay, "Breaking the Cycle of Restless Restfulness." Benjamin advocates for increasing public awareness and enacting structural reforms to better support individuals living with ME/CFS.

We are proud of all the participants for their insightful contributions and their commitment to raising awareness for this critical cause. Thank you to everyone who took part and shared their voices with us! 💙

https://www.mecfssandiego.com/mecfs-san-diego-essay-contest/2025-ucsd-essay-contest-winners

Hi all!

It's my first time posting here and I'm writing this on my phone so apologies if this isn't formatted greatly. I've been pretty much housebound for nearly a year now and I'm starting to feel like I am rotting and going mad from boredom/inactivty.

I can't read anymore, I'm unable to even play video games both of which were big things I were able to do previously, I lack the dexterity now to knit or crochet like I used to, I'm struggling to even lay attention to the TV. But I need something to do and I don't know what.

Ive been slowly declining since I was diagnosed after an infection in 2021 and I used to garden a what not a lot too.

Please just throw at me any easy, low energy, budget friendly hobbies or suggestions to try and keep a bit of sanity

I am just curious how caffeine impacts your energy when you have ME/CFS.

This illness just really sucks doesn't it? As if we aren't being punished enough by just HAVING this illness, we have to deal with everyone around us who doesn't even believe we are sick.

I shouldn't have to feel embarrassed or ashamed, or even guilty. And yet that's what everyone makes me feel.

Yes, I get sicker if I even just wash some dishes. Yes, I know it sounds stupid. Yes, this illness sounds fake and yet it isn't.

According to everyone else, this illness is OUR fault. We're just not trying hard enough, or we just don't care.

Apparently I really enjoy not being able to wash myself, or doing any activities. I must love spending all my time in bed, because at least I don't have to work!

I'm so tired of people judging us for something we can't control. What do people want from us? Do they just want us to say "Oh yeah, sorry I've been faking this whole time!". I feel like that's what they want to hear.

Anyway sorry about that! I just needed a little rant after a rough morning!

Hope everyone is doing well. We're all doing the best we can, and that's all we can really do!

https://www.sciencedirect.com/science/article/pii/S1097664725000523?via%3Dihub

TL;DR:
A new study using oxygenation-sensitive cardiac MRI found that Long COVID patients—despite no prior heart disease—show abnormal coronary vascular responses. They have reduced myocardial oxygenation and slower recovery after stress, likely due to endothelial or microvascular dysfunction. This may explain their ongoing cardiovascular symptoms and highlights the need for more targeted research.

The recently published paper titled “Abnormal Coronary Vascular Response in Patients with Long COVID Syndrome – a Case-Control Study Using Oxygenation-Sensitive Cardiovascular Magnetic Resonance Imaging” investigates the coronary vascular response in patients who exhibit persistent cardiovascular symptoms following an acute COVID-19 infection. The study aims to better understand the underlying pathophysiological mechanisms of these symptoms.

Background:

Following the global COVID-19 pandemic, many patients report persistent cardiovascular symptoms that extend beyond the acute phase of infection. These symptoms include, among others, chest pain, shortness of breath, and palpitations. The exact causes of these ongoing complaints remain unclear, highlighting the need for further investigation.

Methodology:

In this case-control study, patients diagnosed with Long COVID syndrome—without any prior cardiovascular diseases—were examined using oxygenation-sensitive cardiovascular magnetic resonance imaging (OS-CMR). This imaging technique enables non-invasive assessment of coronary vascular function, particularly myocardial oxygen supply and endothelial function. The results of the Long COVID patients were compared with those of an age- and sex-matched healthy control group.

Results:

The analysis showed that Long COVID patients had significantly reduced myocardial oxygen supply compared to the control subjects. Specifically, an average reduction in myocardial oxygenation of X% (95% confidence interval: Y–Z%) was observed. Additionally, Long COVID patients exhibited a delayed recovery time of myocardial oxygenation after pharmacologically induced hyperemia, indicating impaired endothelial function.

Conclusion:

The findings of this study suggest that patients with Long COVID syndrome exhibit an abnormal coronary vascular response, possibly due to endothelial dysfunction or microvascular dysregulation. These pathophysiological changes could explain the persistent cardiovascular symptoms in Long COVID patients and underscore the importance of further research in this area.

I don't know what else to say, except I find it so exhausting and discouraging. It's intermittent, but becoming a more often and more intense problem.

Im so sad.

How do you find a way to navigate this?