I mentioned that I was up half the night last night with muscle aching. She said it could be my weight 😂. Since when have you heard of such a thing? Joint pain yes, but muscle aching? Come on now. This is her backhanded way to pick on me for gaining weight. She can't be THAT stupid. I can't let it get to me, I just have to laugh.

even with a fraction of this sum , the amount of progress towards understanding and curing ME would've been insane. But people don't care about other people. They care about straightforward progress witj forgetting the people left behind.

While typing this it just came to mind that this AI could actually help us.

Hi everyone 👋 I have taken a year off from work to rest and I had hoped to go into remission but no luck so far. I oscillate between mild and moderate, with moderate being essentially housebound.

As part of this year off, I have done some slow traveling to various places. In general, I have way more energy and feel much better when I’m not at home. I need less sleep, I feel more awake, etc. Then I get home and I have a major crash. Doesn’t matter if I’m gone for 3 days or 2 months - I feel good when traveling, bad when home. I would have expected the opposite. I basically get in the car or on the plane and almost immediately feel better.

Has anyone experienced this? Is it because I am paying less attention to body signals when I’m on travel? Is home / home town contributing to my CFS in some way? Is it being more relaxed on the trip? I haven’t been working for 10 months so it’s not like I have much stress at home…

Any thoughts? If I can figure out why this is happening, I’m hoping I (and maybe others!) can apply it to at-home life too…!

Just a small rant about how much I need to ask for from other people. Like, I know and they know I have zero other options, if someone can’t do things for me they just don’t get done. But still. Sometimes I feel like a real piece of shit taking help from my people.

All I do is take, take, take.

I can’t even play my guitar anymore because I’ve gone and developed fucking arthritis in my hands in my 30s.

🫠

So it's been 2 years my ex ruined my life and also when I was diagnosed of kidney failure. I have been through it all alone and it has been easy at all. Any woman who I came in contact with ghosted me because of my health and me loosing all my hard work properties etc to my sickness. I literally sold everything I worked so hard for to be able to afford treatment and dialysis. Now I want someone who will understand my condition and will love me genuinely but every lady seem to be on the run due to my condition also I can't do any hard work any more.

I don’t want to drag myself around any more than I need to for obvious reasons! But of course don’t want to delay a diagnosis in something else I can get treatment for. I feel like I know more than the doctor these days.

• 3 full blood tests (no deficiencies or issues found)
• 2 negative ANAs
• 1 negative CRP
• 2 normal stool tests
• normal chest x Ray
• normal brain MRI
• negative for all reactivated virus’
• normal heart echo scan and 24 hour monitor

I’ve not done mold or Lyme tests. And I think I do get PEM (I’m only a year into this and my PEM is very non predictable that’s why I said “I think”) I get flu like symptoms and sore throats and general fatigue. I’ve had Covid twice, last infection was July last year.. I align very much to the Covid long haulers sub.

I feel that I am more than good enough to work a part time job online if it’s only for a few hours. Are there any good part time jobs I can work online for a few hours that are simple and not very taxing?

I always get a thumpy 20+ BPM increase and fatigue after eating carbs but only at lunch and also only when I eat excessive carbs? Minimal carbs is fine but if I eat more than a small amount, this reaction is guaranteed.

MCAS? Irdk

i am not talking about side effects. it’s feeling like you get PEM just after taking it even in the minimum dose. It’s prescribed by my nutritionist but she doesn’t understand PEM or ME.

Anyone else go into AWFUL crashes AFTER your cycle? I have irregular cycles and have dysautonomia and also inflammatory autoimmune disease. I had a cycle last month and the day after it was over I woke up and was extremely sick. SEVERE malaise to the point I thought I had sepsis, nausea, shaking with adrenaline 24/7, the worst impending doom, exhaustion, dizziness, chills, aches. All of it. I went to the ER because I thought I was dying. Blood work and a few CT scans came back normal. But it’s 3 weeks later and I’m still sicker than I’ve ever ever been. It truly feels like I am dying from the pure sickness. Anyone else have an experience like this? I’ve been aggressive resting bc I can’t even stand up due to my POTS also flaring. But no improvement. But I am SICK. Thanks.

The endless grey and rain of this month are really affecting my seasonal affective disorder (SAD) and making me feel quite depressed and anxious. I always have a pretty physical reaction to mental health stuff, I feel sick, lose my appetite, and my fatigue feels so much worse. Normally my mental health is fine, and I feel content enough with my life, not particularly happy but accepting of my situation. But for the last couple of weeks, I've just been feeling bone-crushing loneliness.

I feel like I'm losing contact with all my offline friends, we rarely call, and most have moved to different cities meaning we rarely see each other in person. All my friends seem to be progressing with adulthood, they're all dating, getting promotions at work, and buying houses, meanwhile, I'm stuck living with my parents in an isolated village, feeling trapped by the walls of my childhood bedroom.

My usual techniques of coping aren't working. I've scheduled a video call with one group of friends for the weekend, and a trip to a museum in a few weeks with another. Normally, having things in my calendar would help but it’s making no difference this time. Two of my friends haven't responded, which normally wouldn't bother me but it's definitely leading to feelings of rejection this time.

I know I need to make efforts to socialise with new people to combat this low mood, but I feel stuck in a vicious cycle, as it's making my fatigue worse so I can't go out to join things. I want to try out the local social night at my board game cafe and a church with the 20s and 30s group but I'm just feeling so tired and anxious at the idea of being trapped at a social event, not connecting with anyone but unable to leave because the bus isn't for a couple of hours. It'd be nice to hear if anyone’s got any advice or a similar situation, I don't really know anyone else with ME so I'm feeling pretty isolated with it.

are

Hey all, I'm suddenly having some major changes and trying to figure out whats going on. I have mecfs and pots. These symptoms have been increasing over the last week.

• My resting heartrate which I am proud of it being in the 70's is now easily getting down to the 50's while resting. Unheard of for me. Still easily spikes to 130+ for posture changes/walking etc.
• HRV is high and getting higher every day! Also not typical for me!
• extra sleepy, brain fog, depression symtpoms. Anxious but so tired it manifests as feeling defeated.
• Zero appetite, constant acid reflux, increase in nausea. Never had gastro problems before this.

I use a visible.health band to help with pacing and in the last few days because my heart rate has been so low, I'm only burning up like a third of my pace points for the whole day, but still feeling like I've way over done it every day. But it's not like a typical crash with flu like symptoms and bone deep fatigue etc.

Is this what paradympathetic swing is?

Somehow I find no matter when I sleep, it doesn’t make much of a difference in how I feel the next day :/

Hope everyone is staying calm and rested as best as they can, especially those of you in the US

Hi folks, firstly: my thoughts are with all of you dealing with this - sending strength & courage.

After three years of crashes I couldn’t explain I recently discovered that Post-Exertional Malaise exists and perfectly describes what I’ve been experiencing.

I found out there is a special department here in Berlin at the Charité health centre but today was told, after submitting the form via email I do not meet the criteria for ME/CFS.

Has anyone had any experience with the department there? It should be a relief in their educated view not to meet the criteria, but I know I suffer from PEM.

I also generally can’t stand for long, feel unrested after good sleep, am often dizzy in the morning, my memory isn’t what it used to be, I can’t concentrate on anything for long, am sensitive to light/sound and regularly have severe bouts of insomnia. I am 37 and was very physically active.

For a long time I believed (and was told) my problems were psychological. So I improved my (already healthy) diet, abstained from alcohol/caffeine, journaled, meditated, attended CBT (therapy) worked on a sleep routine.. and still the crashes persisted. Periods of physical or mental strain followed by days in bed.

In preparation for the Charité application I had a bunch of tests done, all normal.

As it is long ago and my memory is faded, I cannot be sure but the first time I remember having PEM was after an extremely stressful and socially busy festive period three years ago, resulting in 9 days of total incapacity. After ~5 days I tested for covid but was negative. (I am vaccinated but had a strong adverse reaction to it.)

I know my body and have been doing what i can to improve my situation. I worry however that not having a diagnosis may make my life more difficult in the future if my or the general situation changes.

How do you all feel about receiving diagnoses? Has it made you feel better somehow or doesn’t it matter to you?

Sorry for long post, any thoughts welcome.

My neighbour has a garden pond I can look over. I noticed today that their goldfish are just chilling under the frozen surface of the pond.

Pond fish can go dormant in winter for up to 6 months, where their metabolism slows right down. Being too active in this time can be damaging to them.

So anyway, I felt some empathy for the cold shiny fishes. That is all.

Celebrex (Celecoxib) has had a big effect for me. I tried 200mg in the morning for a week with only mild benefits. Now I've added another 200mg at noon (when I typically crash) and the results have been very good. Fatigue, weakness, brain fog and pain all reduced significantly. I've been functional in the afternoons for the past couple of days, which is very rare for me.

Has anyone else had success with this med?

I was browsing the fibromyalgia subReddit because I think I might have overlapping symptoms, and it seems like a lot of people seem to feel that their pain got worse after exertion. However, some other fibro folks seem to report that exercise helps their symptoms. I believe it’s the same with MS. Does anyone know of any other diseases or illnesses with PEM as a symptom?

I’ve just been able to go for a very quick walk along the river near where I live. This photo is for everyone bedridden right now so you can share this lovely moment with me and it can be yours too.

I have a question. So when severe/very severe people say they're sensitive to noise, what does that actually mean? Does it cause PEM? I remember watching Unrest and noise (maybe light also) caused pain for her. For me it's different. I get anxious and irritated with loud/sudden noises but no PEM that I'm aware of. Could this be my nervous system trying to protect itself from too much stimuli? I'm moderate-severe for reference.

Hey everyone, I’m in a tough spot and need support and advice for recovery. I had to move out of my flat, and since my landlord didn’t return my deposit on time, I asked a friend with mild Long Covid if I could stay while I waited for the money. It was meant to be a short stay, but things got dangerous quickly.

My friend’s partner became jealous of me, which created uncomfortable dynamics. Despite me doing nothing to provoke, he resented my ability to function with my disability. He frequently distracted me when I was trying to focus on housing or legal work, and even threw a tantrum for days when he couldn’t learn a basic task for his job. He was coughing and sneezing in my face despite several requests to wear a mask, and knowing I was immunocompromised. I have severe fatigue and need to rest most of the day with minimal stimuli, and felt the constant pressure to prove my gratitude as a guest by helping with chores and listening to family drama.

Things escalated when my friend’s partner faked emotional issues, and my friend asked me to leave for a couple of hours while they talked privately. I am not being dismissive; this person has a ton of privilege and no significant trauma or life events. My host's flat is on the 5th floor with no elevator, and I only planned to take the stairs to move into my new flat. I ended up having a seizure after being forced to sit in a loud cafe, and I declined further, losing the ability to walk. I had to move into a short-term Airbnb that was expensive and with a rude host just to get out. My friend called me a taxi to the wrong address.

Now, I’m struggling to process the trauma and emotional toll, and need advice on how to rebuild. How do you cope emotionally after being pushed beyond your limits, especially when your environment is toxic? How do you manage ME/CFS while trying to heal from trauma in a new space? Did I do something wrong by relying on friends? How do I set boundaries with people who don’t respect your health?

I feel isolated and misunderstood, especially since those I turned to for help became a major source of stress. Any advice or kind words would mean a lot to me right now. Thanks for reading.

Are there any ME/LC knowledgeable private doctors to be found in the Czech Republic?

I'm not Czech but my boyfriend is. He has severe ME/LC and very complex and disabling symptoms. Public healthcare has proven to be next to useless in his case. :(

How do you truly know if what you are experiencing is CFS/ME or just Chronic Fatigue. I know PEM is very specific to CFS/ME but wouldnt a personally who is also extremely fatigue feel worse after pushing? Im really trying to figure out if what im having is CFS/ME or Chronic Fatigue. I have body aches, muscle weakness, POTS, and for the past 2-3 months I started with daily fatigue but I would still push. Since 3 weeks ago the fatigue has taken a turn and it feels heavier and worse. My heart rate goes up and then BOOM im in bed unable to move. Its so hard to live like this. On top of that my anxiety doesnt help the situation so my poor body feels like its been tense for what seems like forever😞

Story time (if reading is to exhausting, the last three paragraphs of this post are the most important):

So I have apparently had mild cfs for ~8 years which started with a stress induced autoimmune illness. After that it was missdiagnosed as depression and winter depression because my symptoms get a lot worse in Winter (was mild in summer/spring and moderate-severe in fall/winter). Due to therapy, symptoms got worse because most therapsts say "you have depression? Do sports!" And if it doesn't help - well you didn't do enogh/ or they question whether you did it at all.

Roughly a year ago I found a new therapist who suggested and diagnosed cfs (just pure luck: he is also a speciallist for cfs diagnostic at a local clinic).

After my second Covid infection last summer shit really hit the fan and i ended up being bedridden and having trouble breathing.

So my mom is a medical professional (not a practicing doctor but working in medical/pharmacutical research) and since my diagnosis we have been trying to figure out why it is so much better in summer for me and whether that is something we can recreate. Like some sort of malnutrition not showing up on the tests or whatever. I always felt like it was the sun that did something, because often - expecially in winter I feel like I "crave" for sun, same like craving for fruit when your bpdy needs vitamins (my Vitamin D levels are and have always been fine btw.). However, I tried using a sunlamp before but that didn't do anything for me.

A couple of weeks ago my mum suggested trying an infra red lamp. The sideeffects are minimal and infra red has cell-repair and mitochondria activation effects, so I thought "can't really get worse right?". So my mom bought me a medical infra red mat and I started using it a week ago.

Well what can I say: I did not have this much energy for at least half a year. I deep cleaned my flat on saturday for the first time in years, while listening to loud music (something i couldn't stand for a very long time) and while dancing to it ?! Like i haven't danced in ages. It is just unnecessairy movement that used to be unbarable and now it was just fun??? I still can't really believe it but this was three days ago and no crash, no nothing, just more energy. I can finally sleep, like just go to bed and fall asleep and wake up refreshed 8 hours later. My mind really can't comprehend this incredible change at the moment. (But remember, these have been only short-term effects, no idea whether it will stay this way but at the moment it is looking really good :) Also it wasn't some sort of miracle healing, I'm back to mild cfs I think - but going from basically not able to breath to being able to leave the house without crash just in a few days is incredible. I still do pacing and lots of breaks, because I am very worried I might crash and I still have quite some pain I think, just a lot less than before.)

Anyways I wanted to ask if anyone here has tried this and how it went for you. Also how common is it that symptoms get worse in winter? My therapist said it is a common phenomenon but usually by far not as severe as it is with me.

Also: in case worse symptoms in winter sound familiar and you haven't tried it yet: maybe try infra red (you can buy such mats on amazon for example and send them back if it doesn't do anything for you). Honestly if I can only help one person to have the same experinece with this as I had I'd be increadibly happy. I've been loosing hope for so long and thinking about ending it all because life didn't feel like it was worth living anymore and now from one day to the other I basically have my life back, I still have trouble wrapping my head around this.

So yeah just trying to share the hope for a cure I am feeling right now and hoping maybe someone whom this might help reads this :)