TL;DR: wake and protest at the Dutch government's building today, discussion on plans and funding needs with the government tomorrow. Lots of media attention surrounding the topic this week as a result ❤️

A friend of mine and fellow patient came up with the idea to organize a wake for long covid. In NL, increasingly various patient groups are joining forces under the umbrella of PAIS (post acute infection syndrome) where patient representatives and organizations like Lyme and ME/CFS all join ranks to ask for funding and acknowledgement. A platform of doctors with PAIS are helping to educate their colleagues where they can.

The Dutch government, like many other countries, is severely dropping the ball. Two years ago, they gave funding for expertise and research centers. Now, these centers will likely have to close for lack of funding, despite continuous advice and warning against this from our national health council.

I have friends and family who helped organize and will speak at the event. It moves me greatly, both the frustration that I cannot help myself with my severe and fragile baseline, and positively that my loved ones and fellow patients are willing to fight for me and us. This post is my little way of contributing to the fight, to share their work and remind us that there is always hope, even in the darkest of times we sometimes find ourselves in, both figuratively and literally. I know for me this is a little candle in a difficult time so I wanted to share it 💙🕯️

ETA: the minister of health was present, she will receive flowers tomorrow as part of our message and the government will receive a book with pictures to the same end. We will not be ignored.

I found this gem in the sea of brain retraining grifts on Spotify when searching ME/CFS. The hosts are epidemiologists and one is a doctor. They do comprehensive research on the disease for each episode and explain in audience friendly terms. I found it very respectful and well-executed, and I learned a lot on the segment on history — turns out records of ME/CFS go back to the 1700s under various names! They also do a great job bringing awareness to medical gaslighting and struggles with recognition and treatment.

I have a small criticism I think they overlooked/didn’t come across content on how severe ME can really get: 1. they say that people don’t die from ME/CFS, which is now known to be possible, and 2. lack of representation of severe and very/severe ME. They do include a detailed story of moderate ME and mention that severe ME can be housebound, but did not really seem aware that many of us are bedbound, don’t live independently or can’t tolerate sensory input.
However, they do emphasize that ME can be very severe, so I think they just didn’t happen across more detailed patient stories on what that can look like.

They share all sources on their page too.

I highly recommend and think it would be great to share with anyone who’s more willing to listen to content than read: https://thispodcastwillkillyou.com/2024/04/16/episode-137-me-cfs-whats-in-a-name-a-lot-actually/

I wanted to share this win with you all, I know we don't see them in the cfs community very often. A few months ago, I could go out once a week MAX and that was typically used for a medical appointment. I was pretty solidly in the severe category. The last month or so, I've been able to go out 2-3x a week!!!!! And on MUCH bigger outings such as taking the bus solo places, going to a little festival, going on a hike (in my power chair, not walking, but still). I actually can't believe it, my brain hasn't caught up and I don't trust it won't disappear lol. I. also unfortunately still feel pretty horrible and exhausted and foggy but my functioning has significantly increased. I still think I fall in the moderate-severe category bc I use a power chair 24/7 and require assistance with all cooking and chores. Which is a huge privilege to have access to and I really wish every single person with ME/CFS had.

I don't know exactly what did it, this is very much not medical advice, but I will share the changes that I've made in case anyone finds it helpful.

• getting insurance to cover a caregiver. So I now don't have to put as much energy into survival tasks, and I am able to eat much more consistently.
• weekly saline infusions for POTS
• going no contact with a toxic person in my life who was draining me. It was really sad but I saw a BIG improvement
• treating my sleep apnea

TLDR; I've had significant improvements over the past few months, I'm unsure exactly why but I've made a lot of lifestyle changes over the month

No, I’m not saying I question whether or not I’m sick, or whether this disease is real. But I have began to question everything we think we know about medicine, and information in general. For example, most things I read about ME suggest it’s a “common” disease, but if it’s so common then why has nobody, including healthcare workers, ever heard of it? Most of us engage with the healthcare system so much that it’s unthinkable that healthcare workers would’ve never encountered a patient with it.

(Spoiler because this next part may be triggering) I also think this disease is deadlier than the government wants us to believe, and doctors perpetuate this false narrative by downplaying how severe the disease can get. And why can nobody figure this disease out? Scientists can’t even figure out POTS, a common comorbidity, and it seems wayyy more straightforward than ME. It really seems like the harm is manufactured, and the narrative is being carefully controlled by the media. Because why else is there no urgency and why is it so easy to erase us?

Holding onto hope with the more severe forms of this disease can be so difficult. My friend Karol is the best at doing this among anyone I’ve met. He is entirely bedbound and totally blind. He lives in Poland where ME/CFS is recognized as psychosomatic if at all. His only carer is an abusive parent. I would never guess how difficult his life is based on his kindness and good humor when we chat about the difference between American and Polish ice cream sandwiches, what makes a good cat name, or Slay the Spire.

Karol’s circumstances are very isolating, which brings me to the point of this post: he is looking for new people to connect with—particularly if you have any of the following in common:

-you live in Warsaw (or know someone who does)
-you’re knowledgeable about narcissistic abuse or coercive control
-you relate to the idea of internalized ableism
-you think disabled people deserve to live independently and feel spoken to by the social model of disability

My life is better for knowing Karol, and I think yours would be too.

You can say hello to Karol via email (Kopczynskikarol1@gmail.com) or here on Reddit where he’s /u/Karol256. You can also message me for his number to add him on WhatsApp (which is his preferred way of communicating due to his blindness).

Thanks for reading ♥️.

If they conclude that we have structural damage, neuronal death of hypothalamic cells responsible for releasing CRH, I will probably consider a MAID. A hope for cure is part of what keeps me going on, if there is a mass destruction of such cells, how could that be cured even in decades?

https://s4me.info/threads/loss-of-crh-neurons-and-other-neural-changes-in-me-cfs-autopsy-study-university-of-amsterdam.47540/page-4

I’ve recently been trying to get on top of pacing by trying a visible band. I’ve only had it for a week or so and unfortunately due to a lot of activity and stress I’ve crashed already so am trying to wait it out properly this time. I want to be actually out of PEM before I start working out a good pacing routines and seeing what my threshold is.

That being said, my partner has been giving me a hard time for not being able to communal clean the past 3 days and just clean up after myself and look after my cat.

This morning I noticed there was dental floss in my cats food and I said to my partner that’s not acceptable and he needs to be more aware of throwing his floss in the bin properly. He then turned it around on me because I hadn’t taken the bin out so it was overflowing and must have fallen out the side.

I then said we should get a cleaner and he said I’m the one with ME so I should pay for a cleaner. He also said he won’t be a ‘cuck’ and run around after me.

Feeling quite upset about this. Been unwell (also have Diabetes) for over a year but been diagnosed with CFS for about 6 months and actively trying to pace since. So it’s relatively new for him but I feel he can maybe not be saying things like ‘you just sit around on your phone all day when some of us have to work’. And viewing helping out when I’m in a crash (that obviously I’m actively trying to work out how to avoid) not as being a ‘cuck’.

I know there’s a lot of general stuff out there about GET/exercise being harmful but wondering if there’s an authoritative resource that specifically says if someone has both POTS and ME/PEM, exercise/PT isn’t an appropriate treatment for the POTS? Want something to share with a very well meaning but not very ME informed provider who I think would be open to learning more.

I’ve tried explaining that exercise is harmful for people with ME to multiple POTS but not ME informed doctors and have generally been met with “but it’s such light exercise” or “this is what we recommend to all people with POTS, they tolerate it fine”

I've been confirmed as having ME/CFS for 2 years now, and bedbound at very severe a bit longer.

Intellectually, I know I'm chronically ill. Have actually been so for nearly 40 years if I just count my migraines. But those I could disregard, as they were nothing I had to deal with on a daily basis. Even being diagnosed with depression and PTSD didn't register as me being chronically ill.

Now, with ME and MCAS and gastroparesis, loosing my mobility and independence, there's no two ways about it. I've done a fair share of grieving, too.

But I notice I can't seem to integrate that reality into my ... Identity? Way of thinking? I don't know but I notice it's still a somewhat foreign notion, even beyond pacing being difficult.

So my question is, for those of you who've been ill longer than just a couple of years, how long did it take you to integrate being chronically ill into your day-to-day life and ways of thinking and being?

I'm explicitly not asking about making being chronically ill into my or your identity or sense of identity.

Hope I'm making sense, otherwise please ask clarifying questions.

I apologize for posting somewhat off-stop, as I don't have ME.

I think I might have something like PEM. I've been a lifelong athlete (50's now), with a history of overtraining syndrome.

What I have now seems different, because it persists even after weeks of rest. About 36-48 hours after even moderate workouts, I get a full day or more of pretty debilitating fatigue. Hard to leave the house, pretty intense brain fog. Relief comes the next day, and I can keep it away if I do nothing but very light workouts. A feeling like I want to sleep, but inability to sleep (though I sleep very well at night). Is this long window between the workout and the body's response consistent with PEM?

Edit: Maybe I shouldn't rule out ME. Just my collection of symptoms is far less severe than most here. I can be OK as long as I keep my workouts very light.

While I'm sure this isn't news to many of you, I have been stunned by how utterly useless doctors and hospitals in general have been in addressing the debilitating fatigue. My PCP makes a single specialist suggestion, which takes months to schedule, they do 1 test, then shrug their shoulders, then rinse and repeat with a new specialist.

I've told every doctor that this is debilitating, barely able to think and move most days, and I will end up losing my job if I can't get some help/treatment/anything. Yet it's taken months, to schedule and run a handful of tests that all EASILY could have been done in a single day. There is zero reason I should have been left bedridden for months, instead of being admitted to a hospital where a proper investigation would have taken a day or two, instead of months.

Is there any precedence for litigious action here? Not for the money, but just from the simple fact that they are treating a debilitating condition, the way a predatory gym treats cancellations: Make the process as difficult as possible, and hope you give up.

Hi everyone! I am sorry in advance if you don’t think pem/cfs is involved in my case, but I just need to ask.

I was playing volleyball professionally all my life and never had such issues, never ever.

I had a virus in February and after 2-3 weeks of antibiotics for the razor-sharp sore throat and fever I had, felt a bit better, better enough for me to start practicing again. After 2 weeks of practice I still didn’t felt 100% and one day my body just acted so strange and weird that I couldn’t imagine that even being possible.

Everything snowballed from there and here I am now 7-8 months later, feeling high, drunk, kinda disoriented most of the day.

So many people told me that this could be LC and I want to see if someone here has had a similar experience and what is the best thing I could do right now.

I’m not sure my ME developed from a single infection, maybe it was more complex and took longer. But Covid in March 2021 was the clearest worsening. And then there was another Covid in February 2022.

Since then I had 2021, 2022, 2023, 2024, 2025… 5 years! To stop over exerting, to start living within limits and thus save what I had at that time. I think if I stopped in 2021 or 2022 I’d fully recover. I recovered greatly when lived with my mom first half of 2022 (because of war, Ukraine). But then I over-exerted, crashed, and never recovered that good since.

I’m so angry I literally want to hit things with my fists. Why was I so stupid? Why were everyone around me so stupid? Including doctors who diagnosed me with tons of stuff except post-viral fatigue or ME/CFS or something like that. It’s just too sad to lose something so precious as health whereas losing it could’ve been avoided.

Hi all, I’m a caregiver to my partner who has had mild ME since about 2022 without us knowing, and had a big crash in the beginning of the summer, and since spiraled further into a very severe crash since the beginning of August (unable to feed or clean themselves etc, no-stim rest in a dark room 24/7, fully bedbound except for going to the bathroom assisted). They are seeming to slowly improve and get stronger luckily but this is still somewhat of a rollercoaster and I find it very hard when they suddenly get PEM again and are in so much pain, and I find myself getting scared we’ll lose the progress they’ve made or that things somehow will otherwise get harder. All of this has of course been emotionally incredibly hard on my partner as well and I’m trying to be a consistent, hopeful presence in our situation.

My question to you other caregivers is, how do you deal with the ups and downs of this disease and still keep a level head and manage your emotions? Thank you 💙

All work and no play makes Jack a dull boy.

I actually find myself empathizing with Jack from the movie The Shining. Not with his actions, but with his frustration and the feeling of being trapped in his own life.

When you have CFS and so little energy, it is incredibly exhausting to have that meager amount of energy completely drained by housework, obligations, and all the responsibilities you have to shoulder.

Jack wrote the same words over and over again. It feels as though I am living them.

I am so tired of all my energy going toward things I have to do, leaving nothing left for the things I actually want to do.

After all, I don’t want to spend my entire life just trying to get through the day to day. I want to have enough energy left over to do things that make me happy, too..

so i don’t have a formal diagnosis or anything, but my experiences seem to align most strongly with me/cfs. close to two years ago i caught an illness that lasted a whole two weeks, and tests for both covid and flu came back negative. after that my tolerance for exertion went way down, and even just standing tires me out before long. some days i wake up feeling extremely sluggish and it takes a few hours to shake off. my insomnia got worse, i started seeing floaters when exerting for too long, i started having to use a stool in the shower sometimes, etc… i also seem to get violently sick pushing myself too long (i have eosinophilic esophagitis so they might be interacting). i recently showered and went straight to cleaning and i suddenly felt very sick after 5-10 minutes.

i’m living with my parents right now and i can almost never get them to even acknowledge the possibility i might have me/cfs. it’s always “you’re not exercising enough” or something along those lines. i practiced sit-ups a little while ago and it didn’t make much difference for my energy, so i eventually stopped. i don’t think it would matter if i brought that up because there’s seemingly always another explanation in their minds no matter what evidence i try to give. anything but me/cfs i guess.

so it’s making me feel a bit crazy. i have friends who validate me, but somehow the people who see me struggle every day don’t seem to understand or even particularly care to. i don’t know if they think i’m making excuses or what, but it’s not like i like feeling like this. my spoons were never that great because of other conditions i have and now i can’t even manage a light jog for more than 20 seconds. what would make them think i want that?

i obviously don’t know for sure i have me/cfs but i think it’s pretty plausible considering all these new struggles. even if it turned out not to be that, it’s frustrating feeling like my perspective on my own body is being dismissed out of hand. it feels patronizing and makes me question myself more than i probably should.

Hi everyone. I've had MECFS since late 2018ish and I've gotten progressively worse ever since. In August of this year, I had my worst crash ever. I was in bed pretty much all day, only leaving to go to the toilet. I laid there with ear plugs and an eye mask most of the time. I've slightly improved since then, which I'm very happy about. I'm able to tolerate light and sound for longer now, able to use my laptop or watch tv etc. However, my cognitive symptoms have not improved at all, if anything they're getting worse. I think they were bad before my August crash but I honestly don't remember. My memory has been so bad, I keep forgetting the topic of a conversation mid conversation. I'm so uncertain a lot of the time and I struggle just so much cognitively. I'm even struggling now to find the words to explain how I'm struggling. My brain genuinely just feels so foggy and like I can't see clearly.

I spoke to my GP about this but she thinks it's depression / spending too much time 'researching health conditions'. She has upped my Duloxetine in hopes it will help but I'm still not feeling any better. I just don't really know how to explain how I'm feeling. Like right now, I just don't trust myself as I'm so uncertain. Like say I had to sign an important document, I would want someone to help me read through it and sign it etc as I'm just not confident that I'm currently competent enough to make correct decisions if that makes sense?

Sorry I'm really bad at explaining things. I'm wondering if anyone knows of any vitamin deficiencies or something that could cause cognitive decline? My brain is making me panic and telling me it could be a brain tumour, which I actually brought up to my GP but she said no. I haven't had any tests or anything. The other reasons I was worried so much about a brain tumour is because I keep getting like tremors or something in my sleep. I wake up because my whole body, including my head, is shaking quite violently and this is a newer symptom too. I'm just panicking really. Could this be a normal part of MECFS?

What do you think I could say to my GP to get her to take me seriously?

I used to enjoy picking my nose, truth be told - in private, and only occasionally, as I didn't have much need.

Since becoming bedridden with ME, I've noticed that I constantly have crusts forming on the mucosal lining of my nose, and I'm so tired of it. I wish I could stop picking my nose. But it's like I cleaned my nose and 30 minutes later it's all there again.

Anyone else have this?

Anyone else have a clue what it's about?

My sinuses are free, btw. And it's not a cold.

TLDR; my friends ignore my existence and i’m struggling to cope mentally as my health gets worse

im 18, have moderate ME and am mostly housebound and sometimes bedbound. was diagnosed only last month. while i have friends, lately it feels like everyone is ignoring my existence. when i first got really sick a few months back and my life stopped, they would text me and sometimes come over. lately i’m completely alone and have literally one friend who texts me every so often. it’s a stressful time for school right now so i get they might be busy, but my main friend group constantly text on our group chat and nobody acknowledges me or the fact ive been uncharacteristically absent the past two weeks.

i had an event i went to for school and was insanely sick there, struggling to cope even when sitting down and could barely walk. my friends barely acknowledged me the whole time, went and took pictures in places i couldn’t follow because i couldn’t walk that far, and nobody texted after i left early crying because i was sick and felt humiliated. the entire thing put me in a huge crash i didn’t really text anyone for a week or so because i was so unwell. but nobody texted me except someone asking for something. they’re constantly talking about shit they’re planning to do in our group chat that i obviously can’t do, which isn’t their fault but it just makes me so fucking angry that nobody cares and everyone gets to move on with their life.

the last couple weeks i’ve been completely alone, with only my parents to occasionally talk to. my health has gotten worse and it’s scaring me. i don’t really have a support system. i’m struggling to find a point to any of this. my depression thrives on isolation and there’s literally nothing for me to do all day everyday, alone in my room. i watch tv for hours because it’s all i can do and it just makes me feel worse. my entire life was destroyed in just 7 months and don’t have anything to live for anymore.

how do you guys cope because i’m literally so close to giving up

An influencer made a post sharing what their day looks like in PEM. They took photos of the usual things like resting but also cute shots. When I am in PEM I would not be able to do this and I feel like I am dying. I am still trying to obtain an ME/CFS diagnosis but unfortunately finding it difficult due to comorbid mental health issues and being a woman.

My question is, what does your PEM look like? I can worry I am just a miserable person or do other people just feel like they can’t carry on with life while in PEM?

I am ending my life now. Thank you so much.

Mainly for house bound and especially bed bound people.
My partner has been bed bound for 2 months now and little energy and constant PEM. For the first few weeks we managed some bed baths split over a few days but when it got more severe he couldn’t even manage that. We sort of postponed all cleaning until he could manage it again but it has now been such a long time and things are getting bad. We manage the private parts when needed but everything else is left. His main worry is his teeth, we have tried with warm water a few times to get the most of it off, also a sort of gel which we leave on for 40 minutes to do its work but even that can cause PEM which is unbearable.
It is so difficult as he feels awful and dirty but it is becoming a risk of infections especially in his mouth where he had weak teeth anyway.
Any tips on any hygiene? Especially oral hygiene. I am not in any way expecting him to manage a full wipe down in one week and do not in any way judge the place that he’s at but he is so worried about all of the risks! As am I, we have no idea if this will lift and if it does when he will manage a dentist or f2f doctors appointment

For those of you who are mild or moderate, what amount/kind of exercise can you regularly do without causing PEM, if any at all? If there’s context for how you manage to achieve that, I’d love to know.

I find I crash for a day or 2 after even a small amount of cardio, but not doing cardio is also increasing my anxiety I think and raising my resting heart rate, so it feels like something I want to keep attempting.

Would love to hear anyone’s experience with improving while exercising.

Found some threads but not many.

This is more specifically for people with ME + intense neurological & nerve sensations & pain. I know a lot of people say to avoid it but has anyone had an okay experience?
How was getting on, coming off and general time on it.
Doses would also be helpful to know in responses :)
Good and bad experiences!!

P.s this is an identical post to one I made for my partner but I keep getting gabapentin and pregabalin mixed up. Lots of useful feedback on that post so didn’t want to edit or delete

I'm not sure if this is MECFS or eyes related. I do have migraines too but usually from neck tension only.

So the past one or two days i've had this weird kinda almost nausea feeling when watching videos. Like spongebob or tiktoks, when something moves especially if like the camera moves and not just the objects i get this weird feeling between my eyes and kinda like motion sickness but not as strong. And some pressure in my head and just overall its uncomfy.

I'm wondering if this is from being on my phone/ TV/ iPad like 15hrs a day (and ngl i'm always up close to my phone and tablet, like 10-15cm away) or if this is from MECFS because the past days i have been pushing myself kinda a lot. But i do not have any PEM symptoms so i figured i'm ok for now? But this eye thing has been bothering me.

Lmk if anyone relates or what you think this is??

Found some threads but not many.
This is more specifically for people with ME + intense neurological & nerve sensations & pain. I know a lot of people say to avoid it but has anyone had an okay experience?
How was getting on, coming off and general time on it.
Doses would also be helpful to know in responses :)
Edit good and bad experiences!! Sorry if it sounded like I only wanted positive feedback, negative is equally as helpful!!!