Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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The original was posted on /r/cfs by /u/shallah on 2024-08-09 23:12:51+00:00.

The study could also help researchers create diagnostic tools for evaluating which patients have Long COVID induced by autoimmunity so that doctors can identify who is most likely to benefit from treatments such as these.

Iwasaki plans to continue researching why and how autoantibodies might cause Long COVID, as well as conduct randomized clinical trials on promising treatments. She is also conducting similar antibody transfer studies in other post-acute infection syndromes, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

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The original was posted on /r/cfs by /u/wood_dweller on 2024-08-09 23:20:36+00:00.

This souds really stupid but here is what happened:

I was recently searching for an e-bike. This week I finally found a nice Tern folding bike with a Bosch transmission in a reasonable price. I didn't think long and contacted the seller.

I went for a test ride. It worked really well. Power kicks in super quick, so I'm assisted instantly. I made nearly 20 km on a Turbo mode - I didn't have to pedal a lot. It's less intense than walking and I'm also seated.

Than in the evening I felt tired but not in a usual CFS way. I thought I will either feel much better or I will get PEM again.

Next day I noticed that my baseline drastically improved after last horrible week long PEM. Before that I was struggling with walking and staying. Now after two rides I do not get exhausted during the day. Recently I was Moderate and heading toward Severe territory, now I'm feeling Mild again.

My theory is pedaling caused better blood circulation without exceeding a certain intensity threshold. Laying down all day is good but makes body more lethargic - this creates a loop.

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The original was posted on /r/cfs by /u/Many_Confusion9341 on 2024-08-09 22:15:34+00:00.

Have been in a flare for about 6 weeks and hadn’t managed to get enough rest and now it’s snowballed into me feeling my worst in about 8 months.

Today is a taped down black out curtains, eye mask on, reducing stimuli as much as possible day.

Also always dealing with the fear of if I’ve reduced my baseline (which would suck so bad.)

Would love some words of encouragement and love.

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The original was posted on /r/cfs by /u/VertigoParadise on 2024-08-09 20:18:58+00:00.

Hi Everyone!

My lovely mum (58) was diagnosed with ME last year following a couple of years of presenting commonly reported symptoms. I’m certainly not an expert and appreciate that the condition is no means static, but generally I would say she is afflicted “medium”. AKA not able to work anymore, but equally not entirely bedridden on an average day. Usually if I drop by for a visit I limit my stay to two hours as I know this will be appropriate for her energy levels and she will often need a nap after and that will be her “thing” for the day. She is still learning to pace herself.

Before her condition set in she was always took pride in her appearance, it’s important to her makes her feel good in herself. Understandably though with a lack of energy and brain fog etc (not to mention disposable income to get things done professionally), her beauty upkeep has taken a backseat.

She has said to me she is looking for a very quick and easy routine to perk her up. I recently bought her some nice tinted lip balms and she was really grateful and said a lot of her old favourite lipsticks feel horrid texturally and she now is looking for products that feel good too (I appreciate this is subjective but we can all agree matte lipstick is uncomfortable). For reference she usually uses her hands to apply make up, and has dry skin, but can perspire a bit through the day.

I’m thinking: Tinted Moisturiser/spf Concealer Cream/stick blush Cream/liquid eyeshadow Tinted lip balm Setting spray

I can tint her brows and lashes every couple of weeks so she doesn’t have to worry about those. What products do you find feel nice and are low effort ?

Her hair has always been a bit au naturel, but it can border on matted nowadays I’ve noticed…

What easy shampoo/conditioner (bonus if two in one!), brushes and serums do you find make looking after your hair easier?

Thank you so much from me and my mum!

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The original was posted on /r/cfs by /u/justacceptit234 on 2024-08-09 17:38:52+00:00.

...you're wearing a mysterious shackle that doesn't let you live your life

...you're trapped in a spider web

...you may have the drive of a race car but not the keys to open the garage

...you're inside a soap bubble watching everyone living their lifes and somehow you can't take part in it

...you're robbed of an essential part of yourself. Only 20% of you is living this existence

More to follow

Need to cry first

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The original was posted on /r/cfs by /u/Ananiujitha on 2024-08-09 19:08:39+00:00.

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The original was posted on /r/cfs by /u/ancapwr on 2024-08-09 07:49:11+00:00.

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The original was posted on /r/cfs by /u/thecloakedsignpost on 2024-08-09 11:18:48+00:00.

I read up on the service I've been referred to, and will admit I already made a few assumptions. I am here in the hope that I am wrong. It says it follows the biopsychosocial model, as opposed to the previous medical model.

While on paper, this states that the disease is biological in nature but affects the psychological and social aspects of one's life, it's description seems to heavily imply that while chronic fatigue syndrome can be triggered by a physical (lit. biological) factor, i.e. a virus; it is perpetuated by psychological factors, i.e. anxiety; which in turn makes the everyday activities (lit. social) problematic.

The biopsychosocial model appears to be designed to be ensure the body as a whole is studied, rather than a singular aspect. In theory, this is fantastic, but from what I have read it either seems wholly misunderstood, or I have misunderstood it.

Am I right in saying they've just thrown a convoluted maze of rose petals around the diagnosis and filed it under “mental disorder”?

This is all part of a group programme. I'm apparently to see a physiotherapist and a psychologist. There are to be 8 group sessions over a 3 month period, with a final group review around 3 months later. The sessions last 2½ hours each.

Many thanks, and many hugs.

Update: thank you all so very much for your support! You're all fantastic and I shall consider my options very carefully.

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The original was posted on /r/cfs by /u/Cartographer300 on 2024-08-09 08:21:38+00:00.

You know?

Very severe broke alone

For the fact that I'm here rotting alone in a room that smells like pee and shit and I can barely move

For the fact that I feel like as if I was going to die

I actually read that we feel like people the days before they die. Just that for us it keeps going and going it never ends.

I remember also seeing videos of people with cancer going through treatment and they were doing better symptom-wise than me before this crash when I was just severe. And I was like wtf

And later I've read that out quality of life can be worse than that of many people going through cancer treatments.

I even seen terminally ill people that can walk to the park. I mean I'm sure it's not everyone. Others can apparently talk and watch videos. I don't know if it's all the time or not.

I'm going crazy playing dead in the dark. Surviving on milk cartons.

I wish I could literally tell any friend of the ones that lived here how bad I'm doing and that they'd come straight away. Or at least come to help at some point

I guess I just feel lonely

My neck hurts so bad that I can't sleep and I can't even get a PT over

I guess I just feel lonely

I just wish someone gave a shit about what I'm going through enough to do something about it. Not just say, I'm sorry, I hope you make it out "somehow".

I know it's too much to ask

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The original was posted on /r/cfs by /u/Strawberry1111111 on 2024-08-09 06:26:50+00:00.

This is me almost every damn day. 🥺

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The original was posted on /r/cfs by /u/CorrectAmbition4472 on 2024-08-08 22:27:32+00:00.

Severe, bedbound

Clothes, jewelry, shoes, makeup etc. I obviously can’t wear any of it anymore we had to buy new clothes that are comfy I live in the same couple pairs of sweats/pajamas past 2 years but I still can’t part with my old stuff :/ feels weird to save it in hopes I can wear it again probably will be out of style by then anyways. I did give some of my trendy stuff to my sister so at least it can be used while it’s in style. Makeup I can probably get rid of as that will spoil but I used to be a makeup artist so hard to part with knowing how much money I have spent on it all. I can’t walk but I do love seeing all of my cute heels/shoes but also it makes me really sad at the same time

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The original was posted on /r/cfs by /u/robodan65 on 2024-08-08 18:54:55+00:00.

I just realized I probably have ME/CFS a few weeks back. Still working on a proper diagnosis.

I find it hard to pace. I keep looking for some signal from my body that I'm about to overdo it. What are good things to look for?

I did pick up a Garmin activity watch, hoping it would give me good signals. Mostly I try to keep my HR under 100 and stress (HRV) low, but maybe there are better ways to use this?

UPDATE: Just wanted to thank everyone for so many useful responses! Seeing the range in experiences is helpful for understanding how this can present.

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The original was posted on /r/cfs by /u/tobivvank3nobi on 2024-08-08 20:20:50+00:00.

🫶🫶🫶

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The original was posted on /r/cfs by /u/makethislifecount on 2024-08-08 20:08:56+00:00.

I had the misfortune of reading a doctor’s assessment today where they had reduced my moderate/severe CFS to a “mental illness” and “psychological condition”, and made a lengthy case for how I am absolutely fit to do my regular activities. That my current resting/reducing of activities was actually harmful, and was worsening my condition and preventing my recovery. In other words, I was choosing to stay ill and had no actual inability to work like a normal person. My stomach actually dropped reading it. I felt guilty somehow - like I really was at fault, and was making it up somehow. I started to doubt if I was on the wrong track all along. Which is ridiculous because I do know how bad my condition is, but in that moment I actually put years of evidence - suffering and pain and experience - to be lower than a single doctor’s assessment.

That’s when I realized - the gaslighting is real and it is powerful! Hearing someone in a position of power like a doctor who is supposed to be knowledgeable and do no harm - that carries weight and can genuinely make you question your own condition. I still feel pretty let down from this whole experience but I am trying to pick myself back up and carry on. Can’t wait for better CFS knowledge and care to be available. Thanks for reading - take care everyone!

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The original was posted on /r/cfs by /u/LarryTheMedicineMan on 2024-08-08 14:29:06+00:00.

To have kids or not have kids? What are your thoughts?

In the scenario of being severe, not being able to go to the store, just walk to the bathroom..The car.. Not being able to walk stairs. Live on first floor. Severe muscle weakness that progresses.

Is it egoistic? Is it too much while sick and the woman in the relationship has to do basically everything with the kid? I can make my own meals, go to the toilet, shower, I can drive, but my muscle weakness /premature muscle fatigue is my biggest hurdle.

50% of marriages goes to shit. Are we doomed? 7/10 divorces are initiated by the woman (apparently). I just throw these out there as if I were to have kids the main goal would be to give them the best and most healthy upbringing possible.

I would love to hear your experiences, thoughts and everything. Dont hold back

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The original was posted on /r/cfs by /u/s-amantha on 2024-08-08 16:31:53+00:00.

Today we honour those in our community who are most affected by ME/CFS.

To those who participate in this community, to those who read but are unable to comment, and to those who are unable to access this community at all:

we see you, we see your suffering, and we continually remember you.

You are the silent heart of this community. We cherish and honour you.

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The original was posted on /r/cfs by /u/cuzbrushtruewood on 2024-08-08 14:35:29+00:00.

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The original was posted on /r/cfs by /u/crunch1227 on 2024-08-08 12:19:45+00:00.

Since being officially diagnosed ~3 years ago, I get less and less excited about plans. When I was initially dx’d I still tried to push myself to enjoy life and defy my diagnosis because I’d coped for long enough already.

I now actually panic about having plans and definitely don’t look forward to them because I know how tired I’ll be afterwards, even if I have a nice time.

It’s frustrating because people are inviting me to be part of important events in their life but I just feel like this.

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The original was posted on /r/cfs by /u/No-Potential3091 on 2024-08-08 04:03:27+00:00.

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The original was posted on /r/cfs by /u/SophiaShay1 on 2024-08-08 02:15:23+00:00.

I'm so overwhelmed and frustrated by this whole situation. Living with long covid/ME/CFS Is crushing me. I need guidance. I need your real stories. I've been on 10 medications since January. Almost every single medication has either made my dysautonomia/orthostatic intolerance and tachycardia and adrenaline dumps worse. I'm waiting on lab results as we speak. I have an appointment with my doctor on Monday.

What do you wish you would've known about medications back when your symptoms began? It seems every medication causes horrible side effects and makes everything worse. I've been awake for 33 hours cycling with these same symptoms. I'm taking metoprolol XR 25mg for dysautonomia and cetirizine and omeprazole for MCAS symptoms. Please share anything you think might help me and others here. TIA

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The original was posted on /r/cfs by /u/_hecalledmesubaru on 2024-08-07 16:02:40+00:00.

Hi everyone,

I'm a person with ME, but this post isn't for me, but for a friend I met online. They've had Long Covid since 2020, though their ME/CFS symptoms were mild for those first three years. For a few months though, their health has been deteriorating. Not only have they been bed-bound for months, but they also have been having severe tachycardia, with very scary episodes (I forget the name of what they have, but it's potentially very bad). They are so weak that they have been having a very hard time feeding themselves. They had a feeding tube for a while, but were not able to sustain it, as they've struggled with pulmonary aspiration and the likes. As a result, they have lost a lot of weight, to the point they now weigh 35kg (77 lbs). They live with their family, but their family doesn't take their illness seriously, and are very much in denial of the situation. They believe that my friend has a psychological problem (which I know to be untrue, they very much have ME/CFS) and they believe that if only my friend took antidepressants and saw a therapist, they'd be cured.

Unsurprisingly, my friend is terrified. The combination of them being severe, them being underweight, having relentless tachycardia and horrible anxiety about the situation has put them in a vicious circle, where they just can't recover from this crash.

I think they desperately need to get help for their tachycardia, anxiety, as well as their weight. They've seen a cardiologist in the past who had them try several betablockers, to no avail. Problem is, my friend is VERY sensitive to meds, and wasn't able to do well on any of them. The side effects on them were extremely violent --think nausea, vomiting, pain, etc.

So here's my question: what can we do to help them? What should the next step be? Are there treatments that might be better tolerated by them? I reckon they didn't start with small doses and slowly work their way up. Is that something that can be done with heart medication?

Onto the next question: they live in Belgium, in the French-speaking part, to be precise. At this stage, they can't get out of their bed to go see doctors. Is there any specialist that would accept to do telehealth with them? I'm thinking an ME-informed cardiologists would be a plus, but I'm not holding my breath.

I'm desperate to connect them with doctors who are knowledgeable about ME, and I think the situation is urgent. Any help with the situation would be appreciated.

TLDR; How can I help a bedbound ME patient who struggles with cardiac issues, anxiety and being underweight, but who is too med-sensitive for any treatment? Also looking for suggestions of doctors willing to do telehealth with them in Belgium.

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The original was posted on /r/cfs by /u/DandelionStorm on 2024-08-07 21:29:39+00:00.

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The original was posted on /r/cfs by /u/Lunabuna91 on 2024-08-07 20:05:11+00:00.

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The original was posted on /r/cfs by /u/RatherBGone on 2024-08-07 19:44:16+00:00.

Sorry, not sure if I tagged this right.

How do you not feel miserable and crazy and on edge all the time from being perpetually exhausted?

It makes me feel legitimately insane that I can't just do the things I need to do, want to do, because I just don't have the energy. To sleep for 7-10 hours and wake up exactly the way you felt before going to sleep if not worse for years. Caffeine barely makes a dent, even pre-workout offers minimal results. I genuinely don't even want to wake up because I know I'm just doing to feel like a zombie every single day.

** I'm sorry if the way I worded this implies I think people with CFS are happy and live regular lives. Last time I posted about wanting to die because I can't live like this and people told me I need to be more positive and it's possible to cope so that's what I'm trying to do. I don't think anyone forced to live like this is thriving. I'm just really struggling and I keep being told to reach out online to others with CFS for advice. I'm sorry I presented this in an insensitive way.

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The original was posted on /r/cfs by /u/viv_ian on 2024-08-07 14:47:09+00:00.

I made a post like this a few years ago I think lol but do pls come thru in the comments. What's the most insane (or funny) thing yr asian parent has said abt yr CFS 🫣 I have been surviving dealing w the trauma via humor for years and youngmi mayer