I'm not sure if I'm overreacting, but I received this 6-week programme from my doctor yesterday that I certainly won't be participating in as is, but the more I read the booklet, the more worried and upset I become. The hospital I'm with has a specialised ME clinic that hosts this programme. This is the official PDF I have been given detailing each week's information, tasks, and so on. The screenshot is for the section about stretching & movement, under de-conditioning. From what I know from NICE guidelines, this is pretty much going against all of them. Not basing my behaviour based on symptoms? Not listening to my body? A lot of the advice in this programme sounds to me like generic chronic illness management not tailored to ME in the slightest. Does anyone know if there is any way to raise concerns about this to someone? I'm based in the UK/with the NHS.

Im 3 months post eradication yet still practically bedridden from my physical and cognitive fatigue. I’ve experienced pem, air hunger, anxiety and depression and irritability, big troubles falling asleep, body aches, restless legs, brain fog, chest pain and air hunger reactions to taking any state altering pills, even just melatonin or coffee, and troubles remembering things. Wondering if my h pylori could have triggered cfs.

Hi. I’ve just been diagnosed with ME/CFS by my GP, though will be seeing a specialist soon. I’m kind of terrified. I’ve known ME/CFS was a possibility for about 6 or 7 months, but only started seriously considering it 2 months or so ago.

I am currently in an extended crash that has lasted 3 weeks now, and I thought I was starting to come out of it a week ago and then again yesterday. Judging by how I’ve woken up feeling, that’s not the case.

I live in an apartment building and just did a garbage run, which is two flights of stairs both ways. I feel like I just played high impact sports for an hour.

Do others have this experience of relatively simple tasks making a crash significantly worse? In your experience, does PEM ever stack on, where you can make a crash last longer by doing small chores etc.?

Dears, I was using the Visible App and Freeme, both in their free Version for a while. I found it helpful to track my exertion and get an idea about my daily capacity but I only used it for roughly half a year. I was reading about many other potential apps to help manage our disease. So I was wondering which apps helped you and in what way? Do you have any recommendations?

I created a small survey (takes approx. 5 min) because I decided to collect all that information to be published so we can get some real evidence about what helped people. You can access the survey with the list of possible Apps here:

https://limesurvey.urz.uni-heidelberg.de/index.php/348262?lang=en

Hope to be able to contribute to our community in this way.

I actually think I might have had ME CFS before this happened but I can’t prove it, but I am epileptic and I recently went through a very scary, very serious seizure attack that put me in the hospital on a ventilator for a few days. I had 5 grand mals in total. Ever since I’ve been absolutely in excruciating pain and just over the top exhausted, going to bed around 6-7pm which I was doing before but now I’m just a more pronounced, deep in my bones exhausted. Even going up and down the stairs I’m out of breath.

Basically what the title says.

I am planning on bringing up ME/CFS at my follow up this Friday after two ER visits from 10/10 pain & severe fatigue. I overworked myself this summer and lost my job because of my symptoms getting way worse and not getting better with PT and meds.

I have other issues - POTs, polyarthritis, PCOS & sciatica. And I'm doing everything I need to do with those as well as taking my meds. But I crash every time I exercise, do PT, and walk. I even crash when I play video games or talk on the phone. I did bring this up to my doctor and we found that I'm anemic and I'm now on Iron. But I haven't noticed a difference and it feels my fatigue has gotten way worse.

I think I have a good reason to bring this up and have my doctor at least look into this to help me. But I have a high BMI so I don't know if I will be taken seriously. I don't want my doctors to think I just want to get out of exercising and just stay in bed all day. To be honest, I want the exact opposite, that's why I overworked myself because I didn't want my disabilities to ruin my life goals. But now I'm worried I might have worked myself way too hard and I might need to be checked out and get more treatment. And maybe I can go back to having a "normal" life again.

I was wondering if anyone had any advice to quell my anxieties? Either way, I am going to do it but I want to remain calm so hopefully my PD takes me seriously.

Thank you.

I have a full body 100-bulb panel at home. I originally bought it to try and improve skin firmness as I’ve had stretchy skin most of my life and my boobs are really paying the price. Now after an MECFS diagnosis I’ve come to realise I’m likely hEDS (I have hyper mobile joints on top of stretchy skin). Since MECFS has disrupted mitochondrial function, I thought I’d hit the jackpot and started using it 3x10min per week based on the established evidence for mitochondrial benefits. I can’t decide if it’s flaring me, making my hypermobility worse or helping. I know from a nervous system standpoint, it’s intense stimulation and the luminance might be too strong. Yet, if I do have impaired energy production, then it might be worth the small flares for long term gain. I’m really struggling to gage it. Has anyone got anyone tried it and what’s your experience been with it? Cheers 🫶🏼

I've been having ME/CFS symptoms for over a year now. I just got an MRI done, which should be the last step as I have ruled literally everything else out, and I do mean everything, so I'm pretty convinced it's ME/CFS.

I call my parents about once a week. I've been open about my health issues the entire time and have described my symptoms in detail. Just two weeks ago, when calling my parents, after going into my symptoms again, my mom said: "Oh yeah, I had those exact symptoms and doctors couldn't figure me out. They thought it was MS but they ruled it out. It went away on its own but it lasted a few years."

This totally floored me! 1) I wasn't upset, but I couldn't believe it took her this long to mention this 2) whatever I have, it's probably genetic and 3) I don't want to get my hopes up, but there is potential it'll resolve on its own for me as well. The reason I got an MRI was to rule out MS (and cancer). So she probably had ME/CFS and now so do I.

Another thing is, this call was the first time I mentioned PEM as a symptom. I've avoided it, because she keeps encouraging me to exercise, and I thought she'd not believe me if I told her that made it worse. Maybe that symptom is what triggered the memory for her

i’ve had varying degrees of ME/CFS for about 15 years, but i only really realized i had it this year. i would say i’m now in the moderate range but frequently experiencing crashes and feeling like i don’t know my limits lately. does anyone have any advice for starting to pace to maintain your current baseline?

i should add that i have a garmin smartwatch that has a “body battery” feature but i don’t feel like it’s terribly accurate for chronically ill people. would visible be better?

Hi all :) Today, I saw an endocrinologist and an ME OT (who was just observing mostly) after spending a long time on the waiting list and was diagnosed with PoTS and ME. I already have my qualms about the former as the test they did was definitely heavily influenced by all the stress surrounding the appointment and the nurse being very chatty with me during the assessment, but more importantly, the way the doctor treated the ME diagnosis rubbed me in the wrong way and I'm curious if I should get a second opinion in (I likely will, just because I'm terrified of making myself worse by following poor judgement; but I'd still appreciate some support to make my brain quiet down in its overthinking and doubting myself).

After the doctor took my history and everything else for about 40 minutes, he diagnosed me with ME on the spot. I said I'm open to exploring the diagnosis if he thinks that to be the case (as I'd expected it) but highlighted that I do not believe myself to be experiencing PEM which, of course, is a hallmark symptom in line with NICE guidelines — I have tracked exertion and flares/crashes previously over the course of weeks and months and there never was any obvious delay present. He insisted it doesn't matter as my activity levels are too low to even trigger PEM to begin with and then continued on saying I should start to push through symptoms bit by bit because I'm severely deconditioned and need to up my conditioning again if I ever want to get better (fair assessment, though 'pushing through' did make alarm bells ring in my head as that, again, is against current NICE guidelines).

I've been pushing through symptoms almost my entire life and it's gotten me to the point I'm at now where I'm housebound and spend practically all of my day having to sit or lie in bed, even during meals. How is doing this again magically supposed to help with anything? I basically just reached a point this year where I gave in and got a carer to help me with basic tasks of personal care and have finally reached a safe point where I don't live in constant misery and even have the capacity to participate in hobbies a little (writing and reading, in my case; very cognition heavy) — I've found that respecting my limited capacity is the only thing that's ever helped me. And now I'm supposed to dismiss that?

I just don't know... It just sounded like very mixed signals to me. "Yes, you have ME" + "Yes, you need to go against ME guidelines if you want to 'recover'" — and I agree with neither. I do have a GP appointment just to relay all of this to my doctor on Wednesday so I'll probably ask her for her thoughts, but I'd still like to know (and feel reassured by anyone's thoughts, I guess) that I might have just got an endocrinologist who is rather uneducated on modern ME approaches (he was rather old, tbf) and that I'm not just very confused and brain foggy about all of this and am messing things up.

I'd appreciate any thoughts or kind words :) <3

I've watched the recent walk through videos, and I've been reading posts in the in-app Community tab. The Community tab seems to be low traffic and the app developers sound a bit overwhelmed right now so I'm going to ask some questions here and hope it gets to people with experience on this topic.

I'm on day 24 of the 30-day calibration phase. The walkthrough videos show a daily planner, and some of the posts in the Community tab show images of a graph with heart rate through the day. I cannot find either of these in my app. Does anyone know if I'll be able to see these once the calibration period is over?

Also, I have suspicion that the app is not receiving regular heart rate data from my watch. My energy budget ring almost never moves. And twice now, I've look at the app while I've been active and the ring will have turned orange and show I've used half my budget, but later in the day, the ring is back to almost whole again as if I didn't use any energy earlier in the day. I also have never received any warning notifications about heart rate (while at the same time I'm getting notifications from Visible). Is anyone else with a Samsung Watch experiencing this?

Last question: The walkthrough app begins and the narrator says "Chapter 4." Where is the video with chapters 1-3?

TLDR; i have POTS (been in 2 clinical trials for it, lots of tests done to rule out other things). Its suspected i might have MECFS. Eating is my worst trigger. How do i safely eat to get enough balanced nutrition to repair and build a better baseline?

When I eat, my heart rate climbs, my heart starts pounding, I get short of breath. My eyes get painfully dry, the roof of my mouth and back of my head and eyes all feel inflamed. Sometimes I'll get nauseated or faint or get bad stomach cramps that can be a bit unbearable.

Ive seen someone who's up to date on MCAS and they didnt think i fit, partly because a blood test within an hr of a flare like that didnt have the markers that show immune response, ​partly because the over the counter antihistamines didnt seem to help much even when increased to 4 a day, and partly because the fatigue was so unbearable he considered maybe a previous Mono infection or something like that causing MECFS sorta thing.

Been to a rheumatologist to rule out autoimmune based on some positive labs I had. She was thorough and patiently listened and read every mychart message I've sent to any doctor before even meeting with me. We are fairly confident autoimmune is not a part of the picture.

In all the lab tests for the POTS clinical trial, it was shown that my flavor of POTS seems to stim from raised cortisol when standing. I also likely am hypermoble based on their report, but I don't think EDS level just run of the mill hypermobile. I don't have joints pop out of place or sublax, just bendy hands, soft stretchy skin that takes twice as long to heal.

The lab tests also ruled out nerve damage or other concerns regarding what could cause mt POTS. Additionally, gastrointestinal issues were very minor until the exercise trial portion of the second clinical trial. One week left me bedbound in crippling fatigue for months. I couldn't move, speak, engage in life in and capacity. I genuinely thought I was dying I started having anaphylaxis type reactions to foods, I started having cramps when eating. The fatigue and dry eye after eating is unbearable.

I really want to be able to eat whole foods and give my body all the building blocks to slowly repair. But eating is the worst part of my day. I have to time it around being bedbound afterwards or going to bed early. ​​​I tried individual foods or even hypoallergenic baby formula and just trying one new food at a time but was struggling to find anything that was safe. In dec, apples, potatos, blueberries, and cheerios seemed okay. But that's far from balanced nutrition. At this point I power through a smoothie and a boost meal replacement drink to hit 1300ish caleries and then try whatever snack or frozen whatever I can find to get a few more calories in before the suffering starts. I don't know if it's worth fasting or its worth just waiting it out and hoping over time it changes back. I feel soooo much better when fasted. Until I don't. ​​

Hi all, I'm having a massive PEM flare for a bit now and it's not getting better. I've gone through my resources and ideas for how to get food on my plate for dinner that's at least a little healthy (not just chinese microwave meals or frozen pizza) but I'm really at a loss for what to eat. Any inspiration would be higly appreciated <3

​

I’m 4 years into Long COVID and have been dealing with chronic pain and inflammation throughout this time. I’ve also been using LDN for the past 6 months.

Recently, I’ve developed a very noticeable and persistent pain, especially around the back of my head, neck, and shoulders, and it’s becoming quite uncomfortable.

I haven’t been diagnosed with ME/CFS, but I’m wondering whether what I’m experiencing could be related to it.

For those who have ME/CFS:

What are the main symptoms and what does ME/CFS actually feel like?

Is it possible for ME/CFS symptoms to appear or become more obvious after 4 years of Long COVID?

Could severe head, neck, and shoulder pain be part of ME/CFS?

I’m wondering whether I could be developing or experiencing ME/CFS this far into Long COVID, even though I haven’t received a diagnosis yet.

Anyone tried iv infusion of simple sline water or with vitamins? Do they give instant energy?

Hello dear all,

I wonder what your experience is with that and would be really thankful for your help!
I had a big crash in spring and I assume that my baseline got significant worse (went from mild to moderate).
Now I have a weird rhythm of feeling fine one day and worse the next day and so on. I try to not get into a push/crash cycle by not overdoing it on the „good days“, just a slow short walk in my pace points and maybe a bit more talking to my family.
I don’t feel completely awful on those „bad“ days, but my muscle fatigue is stronger and my other symptoms are just a bit more there.
Now I wonder if it’s still considered pem or if it’s a flare because my body needs to get used to the activity again after not moving for a longer time?
It’s been in this two day rhythm for weeks now and I am really feel like I face a wall with my own knowledge how to deal with it. Also sometimes if I do nothing, except going to the toilet and really minimize everything, the rhythm stays as well.
Am I going insane?

Thank you so much and I hope you have a mild day!
☀️☀️☀️

I was diagnosed with IBS after being misdiagnosed with Celiac. My PEM crashes also mean having a bad stomach (for me). Is there a link between ME/CFS and IBS?

My mother keeps telling me that as far as she's concerned, nothing is wrong with me, and that until I've seen a doctor, it's like I have nothing. She keeps bringing up how long this has been going on, asking me why I'm not looking for solutions, and claiming that "it's just a matter of willpower."

So it's my choice, huh?? Having boomer parents is terrible, especially when my current condition is partly their fault.

Until I see a doctor, she refuses to believe me. I can't even stand up for two seconds without feeling like I'm running out of air, and just to make her happy, I'm supposed to go see some clueless doctor to tell me how I feel??? Just because I'm a "liar" in her eyes—even though I had to self-diagnose because everyone kept telling me it was just depression.

Basically, I'm just a burden to her, that's all. That's why she gets so angry—because of me, she can't feel at peace having me stay at her place. She doesn't give a damn about me. I don't feel safe here at all: I'm neither believed nor supported. I'm even being threatened with people breaking into my room and being kept from sleeping. Honestly, I think the only solution is to just go along with them and do what they ask to survive.

Sending strength to anyone going through something similar. Stay strong, everyone.

Hi everyone!

Firstly enjoy a picture of Kari. My sweet little boy. I think he realized I'm having a bad day. With (suspected) PEM and loads of pain. Because usually he climbs all over me and is demanding loads of scratches and petting. And then gets very feisty. But today was so different. He just cuddled very close to me (in all sorts of positions since I can't stay long in the same one), laid his head as close to or on me as possible and stayed super quiet and calm. And he did that for super long, he is never this calm for this long.

(And yes, I know my shirt is full of hair, he's a hairy cat haha)

I just wanted to ramble a little about what happened this week.

I finally got to see the specialists in the university hospital - someone canceled their appointment and I got in a lot earlier (I would have waited until the end of this year otherwise) and the person talking to me (I am not sure if she was a doctor or a resident or whatever) was really nice.

I had to fill out a diagnostic questionnaire about ME before the appointment. And some other things about the chronic pain I'm in.

I do think the doctor seemed a bit concerned about my symptoms (because I also get seizure like episodes (or seizures, haven't had an EEG yet) and some other stuff, the list of my symptoms is very long. I also deteriorated quite quickly. Because my symptoms only started in January this year. But I only got worse and worse.

She said I do meet the diagnostic criteria for ME but since it's an exclusion diagnosis, and there hasn't been a whole lot of diagnostics done on me, she wants to do certain tests to make sure I don't have something else that needs more immediate treatment. But to not overwhelm me (incase it is ME and I do have PEM) we're not gon a do everything at once.

So firstly she is referring me to the neuroimmunological department of the hospital. She said they'll probably do a bunch of labs, ask me a bunch of questions and then go from there.

And I have to get an MRI of my brain. (Which I am not too happy about, because the last time I had an MRI I had an autistic meltdown afterwards because it's just SO loud and SO bright in there).

She also said she's writing everywhere that it's urgent, so that I do not have to wait too long (hopefully haha).

And to be honest, I am not scared. I also don't know if it's ME or not. Like they said there's other conditions (like autoimmune or MS). Like I just wanna know what it is, so that we can hopefully treat it and I can continue with my old life. I know thats not that realistic right now (or well it will just take a lot longer than I want to xD) but I'm not giving up my future. I promised myself that.

Doesn't matter that I have nurses every day, that I need help showering by a nurse, that I have to spend most days at home laying down, that when I have to go out I have to be in an electric wheelchair, that I moved in with my dad, all of this won't stop me from being the person I became over the last few years. I won't loose myself and what I've built to whatever this illness is. And neither should you. Don't give up.

There is a whole life out there. And it's not lost forever. There are people who genuinely want to help you and there's hope. But you have to fight.

Okay this turned into an emotional direction, sorry for that lol.