r/mecfs

From England: So my gp referred me to Neurology with regards to LDN. They have come back and advise Graded Exercise Therapy and CBT.

I’m absolutely disgusted 🤮

Very curious about that.

My story: I was diagnosed 1,5 years after my first symptoms, making it impossible to identify the source. But: It started at a festival. The last day. Very hot and humid. I was sitting in the shadows, and I felt as if I'm being cooked alive. I went to the showers and tried to cool me down with cold water. The sudden cold was a shock to my system and I felt my heart beating out of my chest. The rest of the day, I chilled and partied again in the evening.

And the next day, I was weirdly exhausted, and my heart was beating unusually fast. Later that day I thought I had a heart attack. For weeks I was too exhausted to do anything physical, the doctors didnt help at all, and (miraculously in hindsight) I recovered over three months. I could live mostly normally, until I deteriorated again this year to the point of being bedridden and finally getting a diagnosis.

Of course it still could have been a virus, but other than my heart I didn't feel sick. Just weird. So, how about you?

I overdid it like the idiot I am (only two evenings of 30 minute outing each, but that did it), and now I am in a world of suffering. Please ANYTHING that helps ease PEM that you have found alleviates. Symptoms are.... malaise!! Ummm, head pressure, extreme fatigue, flu-y feeling, worst mood of my life, did I mention crushing fatigue? Tightness in my head and face. Feel like ☠️. Any suggestions and hacks welcome. Yes, I know, rest. Been doin that.

Hello everyone.

So my girlfriend got diagnosed with ME/CFS and luckily very fast.

She has always been a little sleepy the last 6 months but in the last 3 weeks it has been very severe. We got a very fast diagnosis as she works at the doctor herself and they knew the illness.

I know we are extremly lucky as I have seen that most diagnosis take years and we are just at the beginning here but I want to take it very seriously and try to do everything right from the beginning on. Even if it turns out as something different in the end, as we now have to see a lot of different doctors to be 100% sure, I want to treat it as ME , as I think its better to pace right as soon as possible to prevent crashes. At least thats what I learned in the Short amount of time.

Now finally to my question. When do we know if she is doing too much.

I always ask here on a scale from 1-10 how she feels, 1 being the Best and 10 the worst.

For reference, 10 was the day she felt the absolute worst where she Slept most of the day and couldnt do anything. This was 2 1/2 weeks ago.

Since then she mostly Feels like a 5/6 at Best its a 2/3.

Right now when she Walks 5-10 minutes outside its mostly goes up by 2. so when it was a 3 before its now a 5 and when it was a 5 its now a 7.

The time she needs to feel better After Walking depends on how high the scale is.

At a now 5 she needs maybe an Hour, at a 7 it can definetly take longer.

What I would Like to know is, if this is already to much and if we are pacing wrong or if thats how we should do it.
Is it Good and Right to stay under a 10 and taking her worst day as a Reference here or is it already to much that the scale even goes up?

I Hope someone understands what I mean.

Thanks a lot in Advance, I will go to sleep for now myself as its very Late here and come back tomorrow.

I Hope you all the Best

How come there are no celebrities with ME/CFS or Long Covid? Especially Long Covid, with how social celebrity life is. Do they have access to treatments that actually work and for some reason we don’t have access? How are they able to hide it so well?

I built a free ME/CFS tracking app because I couldn't find one that actually understood the illness

Most health apps are built for people who want to "optimize" their performance. That's not us.

I built Lumavie specifically for ME/CFS, Long Covid and Fibromyalgia — designed around the reality of living with these conditions, not despite it.

What it does:

- Track energy, sleep, brain fog and symptoms daily

- Log activities with intensity levels and track the delayed PEM response at 24h and 48h (so you can finally show your doctor the crash pattern)

- Export a PDF report to share with your healthcare team

- Positive moments & affirmations for the hard days

- Silent Heroes Badges for your persistence

- Works on iPhone and any browser (Android included)

It's completely free at lumavie.app — no account needed, all data stays on your device.

I'd love feedback from people who actually live with this. What would make it more useful for you?

💚

The researchers that conducted the fascinating DecodeME study exploring the genetic fingerprints of MECFS are back at it with an even more ambitious project, this time aiming to conduct "long-read" whole-genome sequencing on 9,000 people with ME/CFS and 9,000 with Long Covid. They're still in need of a significant chunk of funding but this is exciting stuff nonetheless

More info here:

https://www.healthrising.org/blog/2026/03/16/whole-genome-me-cfs-long-covid-sequence/

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

Just wondering. I've been diagnosed three months ago and I'm trying to connect my physical issues with the possiblity of it being ME/CFS.

I've dealt with chronic nausea for a while now but it has gotten worse in the last two years. I got diagnosed in February of this year.

I'm also emetophobic, which is lovely.

I want to start by clarifying that this isn't a post asking for medical advice or a diagnosis. I was diagnosed recently with ME/CFS by a consultant Dr in the UK. I have had 2 years of feeling very unwell: tachycardia, dizziness, fainting etc. This is what I thought lead to the fatigue, but during my diagnosis the dr said that my bloods showed I had glandular fever more than 6 weeks ago, but this could mean 6 months, 6 years or any other undefined time in my life (I'm 38), I don't remember having glandular fever, but I used to get tonsitllitis a lot until I had them removed at 18, so it could have masked it.

Now I have a clearer understanding of ME, I realise the regular episodes of PEM I get now, are almost identical to how I have been since a teenager, I'd push through all my limits until I'd get so ill that my body forced me to rest, usually during more stressful times in my life. Could it be possible that I've had mild ME with less bouts of PEM for decades without knowing its ME? I've had blood tests every couple of years during adulthood because I have always felt more fatigued than most.

I do also have hEDS and POTS which can also cause fatigue, and I'm also autistic which is tiring in itself. But the PEM signs are something I can't help but query. Now I am much more severe and its significantly affecting my life and ability to parent my children. I am unable to work and rarely leave my house. This came after 1.5 years of tachycardia blamed on anxiety rather than being diagnosed with POTS, and also getting covid and flu during that time which seems to have worsened symptoms of ME each time.

So is it more likely the ME started 2 years ago when I got really bad, or its being fairly "dormant" for 20+ years, occasionally rearing its ugly head when I push too much?

I'm new to this so don't hate if this is a stupid question 🥴

I didn't know I had ME/CFS since this year and was always told to push through so I did. But everything was getting worse and worse since last I wasn't able to do anything anymore. This was last november.

Now I tried to not overdo it anymore. Watch out for pacing but sometimes I still get crashes. I was an active person before and not being able to do anything is making me depressed.

I was finally starting to loose weight and loose 20 kilos last year. But know I can't do any exercising or I will end up in a crash.

I'm only mild I think, but I don't move that much as before. I walk like 40 minutes a day, to take my kids from school.

But I'm not able to cook or clean or do much more. I mostly lay on the sofa.

But with this, my weight is getting up again. I tried to figure out how much kcal I can eat without moving much and it's only like 1300kcal which is like nothing!

I cope with snacks and I feel like if I'm not able to eat chocolate any other day I get more depressed than I already am.

How do you guys manage this?

I don't want to lose all the effort it took to lose weight.

I'm 19f and I've been struggling with alot of symptoms for about half a year now, and right now I'm really trying to decide if I should play it safe and assume I have ME for now until I get some answers. I am not asking for a diagnosis though.

My symptoms are:

Fast heartbeat when standing up, sitting down, walking, bending down

Seeing Silver glittery sparkles after hot shower (since December)

Muffled ringing ear after bending over for 1 minute to pick something up (since march)

Muffled ringing ear after sexual activity (since march)

Dizziness with exertion (since march)

Phlegm when waking up in the morning (since march)

Headaches when waking up (since December)

Very exhausted during the day, feeling like I could always fall asleep (since February)

Unrefreshing sleep (since march)

Back and neck pain

Abdominal pain (since last October)

Hives, flushing, itching mouth, throat, and skin for the entirety of march that randomly disappeared at the end of march. Experienced one anaphylactic episode. My allergist mentioned MCAS and I'm currently on 2.5 mg of xyzal

I genuinely cannot find a way to figure out if I experience PEM no matter how hard I try but I'm very worried. I know the symptoms of PEM but I'm always in this constant state of exhaustion so I can't tell!

The very odd thing is that some things make me more exhausted than others, like I'm fully capable of having sex for 2+ hours and not feeling like im going to pass out, but if I stand up too fast I get out of breath and dizzy.

I can sleep 10 hours and still wake up tired

My exhaustion feels like a constant state of needing to fall asleep, thats my biggest symptom and concern.

hello! I have fibromyalgia and have been dealing with severe exhaustion for over a year now. if you have chronic fatigue syndrome, who did you go to to get diagnosed (I know it’s super hard to get a diagnosis and it’s more about ruling out stuff)? I have a rheumatologist, but I feel like they barely do anything after diagnosing me with fibromyalgia

I'm mainly asking about a specific situation but I will be adding some context. I'm also curious about if anyone else has any similar experiences with friendships, relationships, or even family. I always try to avoid situations where I may need to be accommodated for symptoms because I feel guilty, or I try to compromise. I don't know where I lay on the mild-severe range of things since me/cfs is relatively new since for awhile me and my medical team thought it was only my POTS making me sick. I can't work, or drive, or go to school anymore, in on my bed most of the day but a few times a month I can go out as long as I don't have to do much. I also go to doctors appointments. Anyways, I just wanted to give some context. A huuuge trigger for me is light, sound, and not a lot of sleep. There's so much more but again, relevant to the situation. If my friend sleeps over, or I sleep over at her house, she has to sleep with the lights and tv on, and always keeps me up very late up until like 3 am sometimes when I want to sleep at least 11-12. If I go to bed any later than that I am absolutely done for for the next week or so. With sound an light taking up so much energy for me it's also hard because she said she's scared of the dark and has to sleep with a show on. I can't do that or I can't sleep, or if I can manage to fall asleep I can't sleep well. When we have sleepovers if I sleep I always wake up so sick, and then later in the day I crash really really hard and then I'm really in a flare for like a week. I've been trying to accommodate by wearing a sleep mask over my eyes but still for some reason I can't tolerate the light and the sleep eye mask gives me really bad sensory issues. I'm going to try to find a more comfortable one and see if that helps. I suggested a small night light but she said it's not bright enough. I don't know how else I can compromise. I get so symptomatic after our sleepovers. I don't know what to do I feel so bad but I don't know what else I can do to try to compromise. Am I asking too much? Even the night light would be a little rough since I need complete darkness but it's definitely much more tolerable than her LED lights or the lights I have in my room. We're both in our 20's if that gives any context at all too.

Not only is everyone in my life seemingly going through an illness of some sort at the moment (pregnancy related illness, chronic autoimmune, broken limbs), multiple people in my circle are showing signs of post-acute illness and recurring symptoms. I got hit the worst which is why I’m here but my boyfriend and I both got a that mysterious cold that went around some states at the same time. I was already very clearly ill and declining before that but my boyfriend since then has been having minor signs of post-acute illness and even POTS type symptoms, just like I have (though mine are much worse). I also have another friend who has “had strep four times this year” and keeps thinking she has strep. Her doctor prescribes her anti-biotics and then a month or two later the “strep” will come back. I worry about her, though I’m trying not to project my own illness on to her. One thing I’ve noticed across the three of us is this; all of us are displaying the same mental illness symptoms. Where spring here in the US and an increase in sunshine typical brings us happiness and reinvigoration (live in a state with really bad seasonal depression rates) we’re heading the opposite direction. We’re all incredibly stressed and feel like we’re one step away from losing it. This is a dramatic departure from normal. I cried for months initially warning people I thought I was going to get thrown in a mental institution. Now my bf and friend are showing similar rates of stress and anxiety. I’m honestly getting paranoid that something is happening and I just don’t know what. COVID is a huge cause for chronic illness right now so that’s part of it but the mental aspect is a mystery. Anyone else feeling like this right now?

How would you or did you deal with friendships post-recovery. A lot of friends lost interest in me after they saw me sick ( fell of the face of the earth ) and others I feel made hurtful assumptions while I was down but not out. Another was a good friend through most of the illness , but crucially was not actually aware of my severity, prognosis, and how constant management and treatments consumed my life, and toward the end decided to pull away because I presumably wasn't meeting her effort and she didn't understand why I was not "growing" in the way she expected. I tried to only share relatable or exciting news and only shared anything illness related if it was positive news. She has recently started ghosting me mid-conversation when I mention health progress (e.g. "I'm feeling better than I have in years" "I got off all my meds, and I'm really excited about it") Now that I'm making it out on the other side am I unreasonable for thinking "you all gave up on me and there will be no second chances" after giving my all and sacrificing my own health and needs to preserve and continue these friendships? I don't have anybody in my life that sees it my way so Im making sure I'm not vindictive ( as my mom would say ) and unreasonable fro wanting to discard all the people who discarded me. I can never feel safe or respected in relationships that have already abandoned me at my worst. Did anybody just rekindle their friendships with people who wanted nothing to do with you post-illness? Like why would I be expected to do that??

I often see people saying things like these about their pem:

-"My pem lasts only couple of hours, because I'm mild"

-"I feel pem immediately"

-"Pem can be mild in mild cases, like just feeling a bit ill for a day"

-"If you are feeling any symptoms it means you already overexerted"

My question is, do you really have "PEM", or do you just interpret symptoms from other dysautonomia like POTS or anything else?

Because most of mecfs patients obviously do have paired conditions which can provoke a wide range of symptoms, in that: fatigue, pressure in head, brainfog, dizziness and all kimds of stuff Both after exertion and without obvious reasons.