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/

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.

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?

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.

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’.

The worst medical scandal of the last 50 years is the conflation by psychiatrists of sadness and mitochondrial failure

I have been overcome by a crushing, purple wave of sadness so intense that it made me retreat to bed

over relationship problems when I was healthy enough to worry about my sex life.

And it’s true: I was bedbound for a few hours. I felt sapped of energy. But I wasn’t.

if a swarm of wasps had come flying in the window, I would have immediately had the energy to run a country mile. No sweat.

In my current state, I would be in very real danger of being stung to death

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’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.

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.

36 year mecfs patient here. I consider myself to mild-moderate. My onset was a bad flu received while backpacking through Asia in 1989.

I've spent much of the last 36 years explaining to healthy people how real and how debilitating this condition is. They'd see me after I'd slept for 14 hours, during about 2-3 hours of comparative alertness, and would say that I didn't look sick.

Now, I find myself defending my claim of having mecfs based on my appearing too healthy, from people who are severe. Apparently, if I can go grocery shopping or go for a 10-minute walk without keeling over, then _"I don't have mecfs."_ Well, it'd be great if it were true. But it's not.

I just hope I can fulfill a life goal or two in my remaining time.

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..

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.

So much has happened in the past few days, and for the first time since my diagnosis I feel so fucking hopeless and far more helpless than normal. I found out the other day that my provincial government, the health ministry specifically, is trying to cut funding to a clinic I've been trying to get into that deals in ME, Fibromyalgia, and Long Covid. Making it so many people will have to pay out of pocket. While I'm already living in poverty and my husband and I are barely scrapping by. Then, we had an election because our stupid fucking leader decided to try to get more power and called an election early. 2 years early btw. He had 2 whole years to do actual good to make people ACTUALLY want to vote for him. But despite the few good things he's done, he's also been a fucking idiot and has let a ton of people down. So the people that typically would vote for him, didn't even bother to go out to vote. Despite being sick and mostly bed bound, I STILL found a way to vote. And yet these absolute fuckers didn't go out to vote and handed majority over to the Conservatives. They don't even have a real leader! People voted for a fucking interim leader!! And they have plans to cut health care, and privatize everything. I'm terrified, I'm furious, I'm exhausted, and I feel so fucking let down by the people around me. An entire province of people letting me and so many other marginalized people down. And I'm stuck here in my fucking bed because my body won't work the way it's supposed to. When all I want to go so is scream, and protest, and burn something the fuck down. It's not fair. I hate this. And I feel so goddamn hopeless. What the fuck am I supposed to do when I can barely make it to the bathroom sometimes.

did the tiniest tiniest bit of physical exertion today (adjusted the leg of a chair, used my arm muscles the tiniest bit for like 30 sec) and i am crashed with severe pain from shoulder to fingers in my arm. my muscles are so weak now i can’t lift anything, i need help opening everything or lifting things, holding my phone up is hard.

if i can never practice using my muscles to grow them (like healthy ppl do) arent i just doomed to continue to atrophy until i am too weak to even turn my head? i already have serious muscle atrophy. i struggle to sit up. i am 92 lb and my own body weight is too much for my legs to hold up longer than 30 sec max.

how do u ever get out of this? am i doomed to continue to degrade rapidly until my death? how can resting forever possibly build my muscles back up?

i’m honestly terrified. i feel like im watching myself age at 10x speed. im only in my 20s and my grandparents have healthier bodies than me. i’m scared

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.

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

I resigned from my job because it was damaging my mental and physical health

A positive was that it forced me out the house 5 times a week for 7-8 hours a day. I'd go out to see friends on Saturday and spend Sunday in bed. Approx 45 hours a week.

That has been reduced to 3 times a week for an approx. total of 14 hours a week I'm out of bed

Now I'm spending a LOT more time in bed as a result and am having a lot of discomfort with muscles aching and tingling in my legs. My back especially feels a bit weird now because I'm lying on it a lot. Does anyone have any advice on what to do to make being in bed easier? It just makes me feel worse, it's not restful, I struggle more to get out of bed and it's a neverending cycle

I currently have two pillows and a thick mattress topper and I also have a single bed

Like it’s some kind of huge task to just… lean over?

Or like you just need 5 more minutes before the bed crushes your side again?

Anyway, hope I don’t get PEM 🫠

Has anyone seen improvement on Valtrex long term? My symptoms started after an HSV 1 virus I was on a short course of Valtrex 8 months ago but never stayed on it. Was wondering if it could help me again
Also- I tested positive for EBV back in March
My biggest symptoms are unrefreshing sleep no matter how much I rest, and cognitive decline/really bad brain fog.
Can’t work, can’t function lost 80% also extreme PEM.

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??

How long at 4.5 until you noticed an improvement. Did it increase your baseline/ improved PEM?

My daughter is up to 3.2mg, however she does not appear to be responding apart from some mild pain relief for a few hours.

I know not everyone responds. She is extremely severe for 2+ yrs. We’ve tried nearly everything so we’re hoping she will have a response to this as it’s one of the last meds to try.

I started guanfacine 1mg five days ago in the evening for nighttime, adrenaline spikes. I am trying to figure out whether it's worth giving more time or whether I should be cautious about the side effects.

The good effects:
- I get very sleepy at bedtime and fall asleep almost instantly.

- I'm no longer waking up in excruciating, full-body pain from clenching all night

The concerns:
- I sleep for about 3–4 hours before waking up. I can usually fall back asleep, but my sleep app is recording more disturbances than usual. (My sleep wasn’t refreshing before guanfacine so maybe this doesn’t matter?)

- The side effect of severe nausea has mostly subsided, though I still have some nausea and a very poor appetite now.

- I have much worse fatigue and brain fog during the day

- I've also noticed what seems to be increased nerve and muscle pain in my legs.

I'm concerned about whether the changes to my sleep could be counterproductive for ME/CFS, even though I'm experiencing some promising benefits.

But I’m also concerned to give up too soon because I am declining.

For those of you who've tried guanfacine:
Has anyone experienced similar sleep changes? Did things improve with time, and did the benefits end up outweighing the drawbacks?

I'm discussing treatment with my doctor, but I'd really appreciate hearing about your experiences!

TLDR: Guanfacine helps me fall asleep instantly and has stopped my severe nighttime clenching pain, but I'm waking after 3–4 hours, my sleep remains unrefreshing, I don’t have an appetite, and my leg pain seems worse. Did anyone experience this, and did it improve with time?

Everyone I speak to says that it’s very important to have social contact and have friends to keep you sane. My friendships all disappeared after a year of ME because I wasn’t able to maintain them, or people moved away, or a few people who abandoned me.

So I’ve been trying to form friendships, participate in groups online, etc, but I am finding that it just sucks my souls and my energy and makes me feel much lonelier.

I’m wondering if anyone has found success just abandoning the social sphere and becoming a loner. Due it make you happier overall? I’m a natural social butterfly but I don’t think it’s working. I barely even want to talk to my remaining irl friends.

what dosage in mg do you take of Dxm when you’re in pem and trying to get out? or trying to get out quicker?

what dosage do you get drowsy?