Sitting in a chair eating a small flatbread and a bag of chips.

Why…

I've been going through a lot (my partner, who was also my carer, left me). My mind is constantly going trying to think of everything I need to do. I've been trying to put those things on a list and move on but my brain is not on board with that plan.

I feel like my energy is getting used up really quick. I went outside on my own which really helped my mental health but I was down for the rest of the day energy wise.

I've been exhausted for days (my body feels so heavy today). How do you manage going through a really difficult time with extra new responsibilities, whilst having this illness?

The last few nights when getting into a relaxed mode and ready to fall asleep I suddenly get this wave of physical panic that feels like adrenaline through my body, though I’m not actually anxious. Following the wave, I start to feel kind of weak and short of breath. It only lasts about five seconds and then I start to feel normal again. That repeats every 10 minutes or so until I’m finally exhausted enough to fall asleep several hours later. What the hell is going on? The only thing I can associate this with is that I started oxaloacetate three days ago. I’m going to stop and see if I feel better but I’m wondering if this sounds like an adrenaline dump? I’ve never experienced this before. Im bed bound and now I’m terrified to relax!

I'm so hopeless atm, so many trials are coming back negative. The bc007 results are delayed and I've read different stories of people getting worse by it. I was hoping for it to be a cure for some of us, but my hope is really small now. How many years do we have to suffer Like this? Will I be bedridden for the rest of my life (I'm so severe that I need to use a bedpan :() Thanks for reading my rant, maybe some of you have some hope to share, I would love that.

I really can’t take this anymore

What drugs or supplements have helped you.

And yes Iv tried LDN and no it barely helped.

Anything please

I’m having a mixed experience with LDN.

I started back in May this year. Started on 1mg in the evening. I instantly felt more refreshed In the mornings, more energy. Nowhere near back to normal but it was helping with the main symptoms.

I worked up to 4.5mg tapering up 0.5mg every week. No issues doing this although, overtime I felt it wasn’t working like it did in the first 4-6 weeks.

After a bad PEM crash I felt like perhaps 4.5 was too high to I started again at 1mg.

This time tho, every time I try to up the dose, I experience awful symptoms and side effects;

Almost feels like a permanent PEM crash - crippling fatigue, headaches, neck and back pain, dizziness, brain fog, overall sick feeling like when you have the flu…

Why is my body reacting so sensitively now, I’ve read a lot about this, it’s normal to feel negative effects for 3-6 months. Something to do with the immune system shifting. But is it worth pushing through? Has anyone had success pushing through the initial difficult phase 3-6months? Some people only feel real relief when they build up to 6+mg.

What are your experiences with LDN?

(Sorry if this is written poorly, I’m in a bad crash and my 🧠 isn’t working like it should).

Thanks in advance.

Orthostatic intolerance is the development of symptoms when standing upright that are relieved when reclining.

i dont get high heart palpitations but i feel more tired and restless i and i get a timer let 15 min stop stand up ,i feel relieve after getting rest.

For those with severe ME/CFS:

•	How many hours of care do you receive each week?

• How do you deal with people and noise?

• How much are you able to talk each day?

• Does anyone use communication cards or other tools to interact with caregivers?

This is more related to long covid than CFS but there does seem to be a lot of overlap so this might be an interest to someone here.

There was a conference yesterday that included a lot of research about long covid. From reading the summaries, a lot of this stuff is very beyond my understanding, but a lot of the talks seem to reference persistent viral infection. I imagine there's a lot of good information in here for the more scientifically minded people in the community

You could read the live tweet summary here
https://x.com/patientled/status/1854914642583355739

And there's an alternative summary here
https://x.com/atranscendedman/status/1854917405052436503

This post mentions that there will be a recording of the event that will be posted on their website in case any of you would like to see it
https://x.com/polybioRF/status/1854660934796501341

It doesn't seem to be on the website just yet but I think it would be here
https://polybio.org/fall-2024-symposium-schedule/

A lot of people are really bummed out about the BC007 presentation being canceled so there might be some hope in here somewhere for y'all

TRIGGER WARNING: severe case description

My partner is severe and he has multiple problems due to leaky gut and MCAS and constipation. No doctor neither at home nor in the hospital could help so far and were very desperate.

He has lost a lot of weight due to severe reactions to food and now also water and he’s not able to do almost anything on his own. At the moment he can eat egg and chicken and trout and has reactions to them but it is bearable. However, for two days he has not been able to drink any water without having pain in his intestine afterwards and shortly afterwards he loses all his strength and crashes. Does anyone know this problem and have any ideas? What could it be that makes water worse than food?

Not sure what to do, it's really uncomfortable smells like vinegar or ammonia or metal. Sweat a lot especially after stressors or more intense activity. Anyone have anything similar? Sometimes goes away for a few days then comes back with a vengeance. Even on cold nights wheres it's like 2 degrees I'm pouring with sweat and smelling like a wet dog.

Sometimes I'm wondering of it's more than just the post covid stuff, fibromyalgia/cfs and something more sinister? So weird.

mitochondria's dysfunction is a problem for cfs because making energy is hard and some people said consuming these supplements may antioxidants.

I've been on the severe side of moderate/severe for half a year now after a big crash caused by covid. But for about a month I've been feeling better and been able to do more things without feeling worse. No fake energy, no new supplements, it really seems to be legit. I know half a year is nothing but it really felt like it's gonna be like this forever or only get worse

I can compose music again, watch TV and youtube, cook simple meals and even do some housework. It feels good to reconnect with who I was before that big crash

On the other hand I'm more scared than ever to catch covid again and be back in the mud. I'll be living with my parents for a week because my partner is on a business trip and I'm so anxious about somehow losing my progress...

So yesterday I went to my doctors just to ask them what they genuinely think is wrong with me. The fatigue, the dizziness, the aching in my back, the sensitivity to light and so on.

She said all my bloods look fine. Even my cortisol which is low end of normal, she is now saying it's doubtful that I have adrenal issue's. Basically apart from my heart murmur which they suspect is innocent and I'm due to get an echocardiogram. She said she doesn't really know what else they could look at.

I left there feeling confused and not convinced that all my symptoms were down to anxiety.

I just felt a fraud really like I have been struggling with symptoms for years but recently this year got worse.

She said even if you had a condition that is mostly diagnosed through ruling everything else out like chronic fatigue syndrome and fibromyalgia that they are treated similar to anxiety.

Then she asked what were you hoping to find in today's appointment.

I was a bit baffled by the question but I just said I was hoping to find an answer ? Then when I left she said it's worth trying the SSRI it won't harm you.

So here I am thinking I have some sort of phantom illness and the closest thing I can relate to is chronic fatigue syndrome.

I have been sick for years and I can't do it anymore, I can't bear the knowledge that my life is passing me by.

I want to be capable of working tirelessly at something and feeling satisfied with the results. Or if not that, at least to be able to listen to music or read for a few hours every day. As it stands, if I try to do any amount of activity, even passive activities, even with resting in between, even sitting down, changing what I'm doing every so often, I still feel terrible not even halfway into the day. Terrible as in I have to go to bed for the rest of the day, I'm nauseous, drowsy, can't relax.

I turn 30 in a few months and haven't begun anything in life. At one point I thought I was going to have a career in engineering or data science, then for a while I was trying to be a musician. It's all gone now. I've lost about 30 IQ points and I can't sustain any focused effort. Just moping around the house all day is more effort than I can handle. Sitting quietly in the backyard or walking around the block is something to endure.

I can't just accept this, I can't pace everything away and pretend there's enough left to be happy. I need it fixed for fuck's sake.

I have hEDS and ME/CFS and every time my neck pops, my fatigue gets worse. Sometimes it happens by accident, like when I'm rolling over in bed. But sometimes I do it out of compulsion. I was feeling a lot better earlier today and I shot myself in the foot by giving into the temptation to pop my neck because for some reason I always think it'll make the stiffness go away, and once its in my head that I need to crack a joint, I have a really hard time resisting. I have OCD too and joint popping is kinda compulsive. Predictably, now my head hurts and I'm exhausted. But it happens far more often unintentionally.

Does anyone know why this effect happens? Anyone have advice for preventing accidental neck cracking? Does anyone with OCD have advice on how to stop compulsive joint cracking?

to preface i am not currently diagnosed with anything. i’ve been in a cycle of fatigue for 4 years. 2 years ago i did PT (due to hypermobility) for a month, while also attending high school and it destroyed me 😅 i used to have good days but since then my baseline has been “just tired“. i believe i am at my absolute worst now. i’ll crash for something as little as being pissed off lol. anyway, this all relates to now because i decided to see my doctors again after a year break. my past joint “discomfort“ has turned into horrible pain, particularly my knees. i’m afraid to bring it up and be put back into PT again. meaning i will be put into debilitating fatigue again. i am also going to see a psychiatrist in a couple days, so i fear they won’t be taking me seriously any longer 😭 i just don’t know how to make it any more clear. any advice on what to say?

I'm feeling particularly alone and sad about my situation and would love to hear from others in similar positions especially about some positive things that you get up to.

But I'm moderate-severe(?), I'm bedbound but at least I have my night bed (regular bed) and day bed (sofa chair) both of which are in my room which has a bathroom. I usually end up waiting until I really need to go before I get up to use the bathroom. It's been well over a month (longest I've gone) since I properly showered, my mama washes my hair while I lay on my day bed and I wash myself with washcloths. I can't even make instant noodles in my room because it takes so much energy and I recently developed what's most likely POTS and it's so exhausting living like this.

I've been using a powerchair for the better part of this year because walking anywhere completely exhausts me. I have issues with pain all over my body but I'm on meds for that so I'm not in pain most days but the fatigue is so lonely. I've noticed my issues with light and sound becoming worse and I'm scared I'll lose the ability to have my two outings a week (1-1.5 hrs each). My insomnia has been terrible and no meds touch it, I'm afraid this is lowering my baseline and it's like I'm watching my life slip from between my hands.

I'm only 19 and it hurts seeing others be able to live their life when I'm having to choose which side effects I'll let slide because the pros outweigh the cons. I wanna hear from others like me, what do you do all day? Are you content with life even if your condition limits you so much? Do you eventually learn to adapt and live like this?

I don’t exercise at all as I have random flares enough from accidental exertion.

I keep my steps under 2000 as best I can and active calories under 400. After flare a few months ago I dropped to aiming for steps under 1500 but closer to under 1000 and under 300 active cals.

However, on a functional level, I’ve really noticed increased weakness this year. And it’s starting to be something that affects my functioning. I especially notice it in my core when I sit up or get out of bed.

Is there anything to do to preserve the muscle I have left or anything I can do to keep or improve functional strength without flaring? Let me know

Hopefully I can word this so it makes some sort of sense, but currently have insomnia so will be awake a while to answer questions/clarify anything 😅

If you have a time of day that you function best at, how much do you insist on doing things at that time of day? And how do you explain to a friend the (heavier) repercussions of doing something at an unfavourable time of day?

Obviously if it's something like a blood test at a Drs, I will get up for it & suffer the next few days, but generally I prefer to do things later in the day if that option is available.

I'm currently at an impasse with a (healthy) friend about an event that has morning, afternoon, and evening slots (exact same thing, just repeated). They are wanting to go to an early event because they feel they will have wasted the day if they go later, whereas I want to go to the later time because that is when I function better. I can sort of understand their perspective that I'm going to have a couple of worse days after anyway, so what does it matter, but from experience the crash will last longer if I don't work to my bodies schedule. And also why should my preference trump theirs? But I feel a little hurt they don't appreciate how much planning and adjustments I would need to do (e.g. extra easy meals, aggressive rest before & after) to make the event no matter what time of day I went. Is it wrong for me to try and limit the after effects?

I don't regularly do things outside my energy envelope but occasionally I like to do stuff to make me feel human temporarily so please no judgement on that aspect!

Basically is a change in the classic “flu-like” PEM symptoms a sign of getting worse?

The first couple months of my PEM would be sore throat and tight chest. Now I have the chills and my anterior tibialis insertion to the knee is aching SO badly. No sore throat or tight chest this time so far.

Thank you

Go to bed 1am to 2am

Wake up when bf goes off to work at 8 am.

Lay in bed half asleep until 11 am.

Wake up fully but can’t go back to sleep, too tired to move out of bed.

Then that night, I get a good night of sleep because I’m so sleep deprived.

But since I slept so much, maybe 9-11 hours, I can’t go to bed the next night and the cycle repeats.

I’m not sure what to even do. It’s been like this since July when my allergies started up.

Would having a very fixed bedtime help?

^^Trying again to share some excerpts from my gofundme without sharing my fundraiser page since it's against the rules of this sub. It's gonna be a crazy long post though, thank you so much if you read it!

- I worked my ass off for 6 months to write my crowdfunding page and I thought I'd share it here for others inspiration if someone wants/needs to write one for themselves. My fundraiser text is by no means a perfect way of conveying our issues for all of us (and its too long) but I still hope it can help someone else.

I took inspiration from similar gofundmes but none were ME related. would have helped if I could have found that for inspo instead.

- One of the biggest reasons for me to make a fundraiser (besides money obvsly) is just to get more visible. Ive felt that ever since getting very severe to severe I look horrible (visibly ill) and I can urge the necessity of urgent help more than mild/mod ME ill people. For the general healthy population I mean.

And its very healing to read messages from donators saying that they wish me well and pray for recovery. Bc I'm housebound and I don't socialize I mostly feel like most people don't care.

- I want to get my story out nationally bc I live in a privileged country, yet we just rot away with practically no health care, due to lack of knowledge in the public health care system. i dont have energy for politics but I feel like I have a responsibility of letting society know that "heeey I'm still alive against all odds, you just cant see me physically protest against the injustice in the streets." (I protest in the sheets hehe)

- I hope a journalist will find my story interesting and write about me, but its been difficult to find one. If anyone knows how to get a rare journalist on the hook, I'd love some tips for that. feedback about it is also welcome! /Linn

-------------------------

"I have severe ME/CFS and I don't get any public health care. I have written this myself because it's difficult for other people to understand and comprehend my complex illness.

It's been one year since I got severely ill and bedridden due to a severe infection in June 2023.

I have had health problems ever since I got a neck injury in 2011 and treatment with antibiotics (Cipro) that I didn't tolerate in Vietnam in 2015. Additionally I have become permanently chronically ill after my pneumonia, lung inflammation, in Thailand in 2018.

After the infection in 2023 I was completely bedbound for several months afterwards. I couldn't eat for a month. I'm still 95% bedridden, without any official support.

I haven't been outside since June 2023, other than when I have had to attend diagnostics or treatments, which I have mostly paid myself.

I'm not functioning well during daytime, especially cognitively, and I cannot get up from bed before around 14-15:00. As I cannot sleep more than a couple of hours every night and because of all of my earlier infections, I have chronic fatigue including PEM (post-exertional malaise), which in particular includes my brain capacity. The extent of my illness, easily explained, is that I'm bedridden 22 hours a day. In reality I have very low levels of functioning and many symptoms, especially neurologically and cognitively, in addition to stomach-related.

I don't have capacity for being outside, because it results in me getting PEM. Which means that I get more fatigued and bedridden for days afterwards, as a result of extending my limits. In order to avoid getting PEM, I need to be indoors at home. Even then I can get PEM if I do too much, even watching a movie or read a book can result in PEM for me.

I can do one thing per day at most.

If I want to wash my hair, that's the only thing I can do that day. I cook once a week and freeze portions of it. I don't have energy to prepare meals every day. I order food and other things I need online, with home delivery to my door. I struggle to sit upright and to walk, after being bedridden for so long. I usually cannot get up or down the stairs to my apartment on the second floor.

This text that you're reading right now has taken me 5 months to write.

A big part of my difficulties is the extreme brain fog, I cannot arrange help as in apply for governmental subsidies or mobility devices for my home. To make a phone call means that I cannot do anything else at all that day. It's limited how much my friends are able to help me with these things as well.

I want to raise money that will specifically go to:

- Neurologist appointment Aleris: €500

- IV antibiotics in Germany incl. Travel expenses: €1700

- Private Doctor Reinhardt Germany: €1300

- Antibodies-tests Redlabs and Vibrant: €1400

- Gezonde darmflora FMT 2 rounds: €2800

- Tveitanklinikken FMT 1 round: €800

Diagnostics and treatment details

I have yet to visit a neurologist after the infection I got last year that ended me up in hospital. I have had 8 general practitioners (PCP) since 2022, yet no help has been offered. I'm not getting help because my health issues cannot be measured by standard blood samples and they don't want to refer me to specialists because of that. Therefore I'm being left on my own without any help whatsoever.

For that reason I want to raise money for full diagnostics at a neurologist, in order to exclude that I have a neurodegenerative illness. I should have gotten this in public health care, but I have waited 15 months already and I cannot wait any longer.

I want to travel to Germany for treatment with IV antibiotics at a private clinic. There are many other Norwegians with ME/CFS who do the same. Unfortunately, I'm too ill to fly since last year. I'm knackered for many days afterwards after a short taxi trip to Oslo that lasts for an hour. Still, I can get help from the private doctor in Germany through video calls and they can prescribe medicine that I can take out in Norway. They offer extensive treatments and they have a lot of knowledge about my immune problems.

I don't tolerate oral antibiotics whatsoever anymore because of bacterial dysbiosis after previous antibiotic rounds. I have become worse after every round of oral antibiotics that were supposed to kill the infections in my stomach (among others Heliobacter Pylori), due to my immune system deteriorating as well. My private doctor in Germany can help me with this so I hope to be able to travel there some day. I have realized that I have no other choice seeing as I'm never going to get sufficient health care in Norway.

My best chance for getting better is to go to Germany.

I also want to take a lab test from Redlabs and one from Vibrant in order to confirm my chronic infections and antibodies as a part of the diagnostics I'm doing with my private doctor in Germany.

These tests can help him to determine which IV antibiotics I need and to suggest other future treatment options such as IVIG (immune therapy) or stem cell therapy.

Additionally I would like to do fecal transplantation (FMT) which helps to rebuild my gut microbiome. I did a round at a local clinic earlier this year. I noticed some improvement, but I couldn't afford more rounds. Recently I did a different type of FMT (capsules) from Gezonde darmflora and my symptoms improved a lot. Within a couple of days I was on moderate severity (ME) again and I could eat normally. My brain functioned much better and I had less fatigue. Unfortunately the effect lasted only for a little while and I have to do more rounds, which is expensive.

I'm struggling to eat and to consume enough food. It has become worse the past 3-4 months and it's difficult for me to keep my weight. I'm already malnourished. I don't absorb vitamins and minerals well according to tests. It's starting to become urgent to get help, I'm not going to get better on my own by just resting.

I don't have any family left except my little sister because I lost my parents to brain hemorrhage when I was a child. I don't have family who can show up and take care of me, in the absence of ME/CFS-friendly governmental health assistants. I wouldn't have survived without my neighbors and I will die if I get worse than what I am right now.

I can't be admitted to a hospital because public health care workers don't understand the mechanisms behind ME/CFS. I was admitted to my local hospital for 3 days during my acute infection last year. I was unfortunately mistreated before I was sent home without any health care or help whatsoever. I would have reported the case to the government if I could, but I'm too ill to spend energy on that. I have to focus on survival and to find private health care diagnostics and treatment, so that I can one day hope to get better.

I received donations last year right after my infection and this was crucial to getting important diagnostics so I could eat again at that point. Still I have no life quality and it's been several years, although it got significantly worse after my infection in 2023.

Sharing of the gofundme is as important as donations. Please feel free to share.

Linn is a 34 year old woman who lives in Hurdal, Norway. She hasn't worked for 3,5 years. Linn is very grateful for the help she has received from neighbors and friends nearby."

--------------------------------

Hi friends! I’ve changed my diet recently, going from not really limiting food to a clean diet where I’m getting 110 grams of protein a day and about 1600 or so calories. (I am 5 foot 1).

However it feels like I’m fasting? My body is not handling the shift well. Prior to getting sick I used to be able to fast for 3 days and often did intermittent fasting with my first meal at 1pm. Now if I miss a meal or lower my calories at all, I am extremely sick (shaky, starving, nauseated, unable to eat much).

Just curious if anyone else has this experience, I am hoping it fades as my body adjusts. But if anyone has insight as to why my body can’t handle diet changes I’d love to hear them mainly out of curiosity.

Thanks ❤️‍🩹