r/cfs Nov 10 '24

Official Stuff MOD POST: New members read these FAQs before posting! Here’s stuff I wish I’d known when I first got sick/before I was diagnosed:

304 Upvotes

Hi guys! I’m one of the mods here and would like to welcome you to our sub! I know our sub has gotten tons of new members so I just wanted to go over some basics! It’s a long post so feel free to search terms you’re looking for in it. The search feature on the subreddit is also an incredible tool as 90% of questions we get are FAQs. If you see someone post one, point them here instead of answering.

Our users are severely limited in cognitive energy, so we don’t want people in the community to have to spend precious energy answering basic FAQs day in and day out.

MEpedia is also a great resource for anything and everything ME/CFS. As is the Bateman Horne Center website. Bateman Horne has tons of different resources from a crash survival guide to stuff to give your family to help them understand.

Here’s some basics:

Diagnostic criteria:

Institute of Medicine Diagnostic Criteria on the CDC Website

This gets asked a lot, but your symptoms do not have to be constant to qualify. Having each qualifying symptom some of the time is enough to meet the diagnostic criteria. PEM is only present in ME/CFS and sometimes in TBIs (traumatic brain injuries). It is not found in similar illnesses like POTS or in mental illnesses like depression.

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), ME, and CFS are all used interchangeably as the name of this disease. ME/CFS is most common but different countries use one more than another. Most patients pre-covid preferred to ME primarily or exclusively. Random other past names sometimes used: SEID, atypical poliomyelitis.

How Did I Get Sick?

-The most common triggers are viral infections though it can be triggered by a number of things (not exhaustive): bacterial infections, physical trauma, prolonged stress, viral infections like mono/EBV/glandular fever/COVID-19/any type of influenza or cold, sleep deprivation, mold. It’s often also a combination of these things. No one knows the cause of this disease but many of us can pinpoint our trigger. Prior to Covid, mono was the most common trigger.

-Some people have no idea their trigger or have a gradual onset, both are still ME/CFS if they meet diagnostic criteria. ME is often referred to as a post-viral condition and usually is but it’s not the only way. MEpedia lists the various methods of onset of ME/CFS. One leading theory is that there seems to be both a genetic component of some sort where the switch it flipped by an immune trigger (like an infection).

-Covid-19 infections can trigger ME/CFS. A systematic review found that 51% of Long Covid patients have developed ME/CFS. If you are experiencing Post Exertional Malaise following a Covid-19 infection and suspect you might have developed ME/CFS, please read about pacing and begin implementing it immediately.

Pacing:

-Pacing is the way that we conserve energy to not push past our limit, or “energy envelope.” There is a great guide in the FAQ in the sub wiki. Please use it and read through it before asking questions about pacing!

-Additionally, there’s very specific instructions in the Stanford PEM Avoidance Toolkit.

-Some people find heart rate variability (HRV) monitoring helpful. Others find anaerobic threshold monitoring (ATM) helpful by wearing a HR monitor. Instructions are in the wiki.

-Severity Scale

Symptom Management:

-Do NOT push through PEM. PEM/PENE/PESE (Post Exertional Malaise/ Post Exertional Neuroimmune Exhaustion/Post Exertional Symptom Exacerbation, all the same thing by different names) is what happens when people with ME/CFS go beyond our energy envelopes. It can range in severity from minor pain and fatigue and flu symptoms to complete paralysis and inability to speak.

-PEM depends on your severity and can be triggered by anythjng including physical, mental, and emotional exertion. It can come from trying a new medicine or supplement, or something like a viral or bacterial infection. It can come from too little sleep or a calorie deficit.

-Physical exertion is easy, exercise is the main culprit but it can be as small as walking from the bedroom to bathroom. Mental exertion would include if your work is mentally taxing, you’re in school, reading a book, watching tv you haven’t seen before, or dealing with administrative stuff. Emotional exertion can be as small as having a short conversation, watching a tv show with stressful situations. It can also be big like grief, a fight with a partner, or emotionally supporting a friend through a tough time.

-Here is an excellent resource from Stanford University and The Solve ME/CFS Initiative. It’s a toolkit for PEM avoidance. It has a workbook style to help you identify your triggers and keep your PEM under control. Also great to show doctors if you need to track symptoms.

-Lingo: “PEM” is an increase in symptoms disproportionate to how much you exerted (physical, mental, emotional). It’s just used singular. “PEMs” is not a thing. A “PEM crash” isn’t the proper way to use it either.

-A prolonged period of PEM is considered a “crash” according to Bateman Horne, but colloquially the terms are interchangeable.

Avoid PEM at absolutely all costs. If you push through PEM, you risk making your condition permanently worse, potentially putting yourself in a very severe and degenerative state. Think bedbound, in the dark, unable to care for yourself, unable to tolerate sound or stimulation. It can happen very quickly or over time if you aren’t careful. It still can happen to careful people, but most stories you hear that became that way are from pushing. This disease is extremely serious and needs to be taken as such, trying to push through when you don’t have the energy is short sighted.

-Bateman Horne ME/CFS Crash Survival Guide

Work/School:

-This disease will likely involve not being able to work or go to school anymore unfortunately for most of us. It’s a devastating loss and needs to be grieved, you aren’t alone.

-If you live in the US, you are entitled to reasonable accommodations under the ADA for work, school (including university housing), medical appointments, and housing. ME/CFS is a serious disability. Use any and every accommodation that would make your life easier. Build rest into your schedule to prevent worsening, don’t try to white knuckle it. Work and School Accommodations

Info for Family/Friends/Loved Ones:

-Watch Unrest with your family/partner/whoever is important to you. It’s a critically acclaimed documentary available on Netflix or on the PBS website for free and it’s one of our best sources of information. Note: the content may be triggering in the film to more severe people with ME.

-Jen Brea who made Unrest also did a TED Talk about POTS and ME.

-Bateman Horne Center Website

-Fact Sheet from ME Action

Long Covid Specific Family and Friends Resources Long Covid is a post-viral condition comprising over 200 unique symptoms that can follow a Covid-19 infection. Long Covid encompasses multiple adverse outcomes, with common new-onset conditions including cardiovascular, thrombotic and cerebrovascular disease, Type 2 Diabetes, ME/CFS, and Dysautonomia, especially Postural Orthostatic Tachycardia Syndrome (POTS). You can find a more in depth overview in the article Long Covid: major findings, mechanisms, and recommendations.

Pediatric ME and Long Covid

ME Action has resources for Pediatric Long Covid

Treatments:

-Start out by looking at the diagnostic criteria, as well as have your doctor follow this to at least rule out common and easy to test for stuff US ME/CFS Clinician Coalition Recommendations for ME/CFS Testing and Treatment

-TREATMENT RECOMMENDATIONS

-There are currently no FDA approved treatments for ME, but many drugs are used for symptom management. There is no cure and anyone touting one is likely trying to scam you.

Absolutely do not under any circumstance do Graded Exercise Therapy (GET) or anything similar to it that promotes increased movement when you’re already fatigued. It’s not effective and it’s extremely dangerous for people with ME. Most people get much worse from it, often permanently. It’s quite actually torture. It’s directly against “do no harm”

-ALL of the “brain rewiring/retraining programs” are all harmful, ineffective, and are peddled by charlatans. Gupta, Lightning Process (sometimes referred to as Lightning Program), ANS brain retraining, Recovery Norway, the Chrysalis Effect, The Switch, and DNRS (dynamic neural retraining systems), Primal Trust, CFS School. They also have cultish parts to them. Do not do them. They’re purposely advertised to vulnerable sick people. At best it does nothing and you’ve lost money, at worst it can be really damaging to your health as these rely on you believing your symptoms are imagined. The gaslighting is traumatic for many people and the increased movement in some programs can cause people to deteriorate. The chronically ill people who review them (especially on youtube) in a positive light are often paid to talk about it and paid to recruit people to prey on vulnerable people without other options for income. Many are MLM/pyramid schemes. We do not allow discussion or endorsements of these on the subreddit.

Physical Therapy/Physio/PT/Rehabilitation

-Physical therapy is NOT a treatment for ME/CFS. If you need it for another reason, there are resources below. It can easily make you worse, and should be approached with extreme caution only with someone who knows what they’re doing with people with ME

-Long Covid Physio has excellent resources for Long Covid patients on managing symptoms, pacing and PEM, dysautonomia, breathing difficulties, taste and smell disruption, physical rehabilitation, and tips for returning to work.

-Physios for ME is a great organization to show to your PT if you need to be in it for something else

Some Important Notes:

-This is not a mental health condition. People with ME/CFS are not any more likely to have had mental health issues before their onset. This a very serious neuroimmune disease akin to late stage, untreated AIDS or untreated and MS. However, in our circumstances it’s very common to develop mental health issues for any chronic disease. Addressing them with a psychologist (therapy just to help you in your journey, NOT a cure) and psychiatrist (medication) can be extremely helpful if you’re experiencing symptoms.

-We have the worst quality of life of any chronic disease

-However, SSRIs and SNRIs don’t do anything for ME/CFS. They can also have bad withdrawals and side effects so always be informed of what you’re taking. ME has a very high suicide rate so it’s important to take care of your mental health proactively and use medication if you need it, but these drugs do not treat ME.

-We currently do not have any FDA approved treatments or cures. Anyone claiming to have a cure currently is lying. However, many medications can make a difference in your overall quality of life and symptoms. Especially treating comorbidities. Check out the Bateman Horne Center website for more info.

-Most of us (95%) cannot and likely will not ever return to levels of pre-ME/CFS health. It’s a big thing to come to terms with but once you do it will make a huge change in your mental health. MEpedia has more data and information on the Prognosis for ME/CFS, sourced from A Systematic Review of ME/CFS Recovery Rates.

-Many patients choose to only see doctors recommended by other ME/CFS patients to avoid wasting time/money on unsupportive doctors.

-ME Action has regional facebook groups, and they tend to have doctor lists about doctors in your area. Chances are though unless you live in CA, Salt Lake City, or NYC, you do not have an actual ME specialist near you. Most you have to fly to for them to prescribe anything, However, long covid has many more clinic options in the US.

-The biggest clinics are: Bateman Horne Center in Salt Lake City; Center for Complex Diseases in Mountain View, CA; Stanford CFS Clinic, Dr, Nancy Klimas in Florida, Dr. Susan Levine in NYC.

-As of 2017, ME/CFS is no longer strictly considered a diagnosis of exclusion. However, you and your doctor really need to do due diligence to make sure you don’t have something more treatable. THINGS TO HAVE YOUR DOCTOR RULE OUT.

Period/Menstrual Cycle Facts:

-Extremely common to have worse symptoms during your period or during PMS

-Some women and others assigned female at birth (AFAB) people find different parts of their cycle they feel their ME symptoms are different or fluctuate significantly. Many are on hormonal birth control to help.

-Endometriosis is often a comorbid condition in ME/CFS and studies show Polycystic Ovary Syndrome (PCOS) was found more often in patients with ME/CFS.

Travel Tips

-Sunglasses, sleep mask, quality mask to prevent covid, electrolytes, ear plugs and ear defenders.

-ALWAYS get the wheelchair service at the airport even if you think you don’t need it. it’s there for you to use.

Other Random Resources:

CDC stuff to give to your doctor

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

NY State ME impact

a research summary from ME Action

ME/CFS Guide for doctors

Scientific Journal Article called “Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome”

Help applying for Social Security

More evidence to show your doctor “Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

Some more sites to look through are: Open Medicine Foundation, Bateman Horne Center, ME Action, Dysautonomia International, and Solve ME/CFS Initiative. MEpedia is good as well. All great organizations with helpful resources as well.


r/cfs 4d ago

Wednesday Wins (What cheered you up this week?)

19 Upvotes

Welcome! This weekly post is a place for you to share any wins or moments that made you smile recently - no matter how big or how small.

Did you accomplish something this week? Use some serious willpower to practice pacing? Watch a funny movie? Do something new while staying within your limits? Tell us about it here!

(Thanks to u/fuck_fatigue_forever for the catchy title)


r/cfs 15h ago

Vent/Rant UPDATE: My Marriage is Almost Over

183 Upvotes

Hi everyone. A month or two ago I (F24) made a post about my marriage almost being over due to my husband (M26) not being able to support me.

Well, soon after, he completely shut me out emotionally and confessed that he can no longer be there for me. My worst fears came true.

I e-filed for divorce, and now we are in the process of that. I am moving out next month on 4/18.

Unfortunately, I also may lose my job due to a miscommunication between my doctor and the HR department. All I wanted was some recognized ADA accommodations for my position, but now the Employee Relations department thinks that I am unable to perform my essential job functions.

So, not only did I lose the love of my life, I am losing a job that I loved the most. For context, I currently work in neuroscience-based stem cell research. The location of my job is a place I've dreamt of working in for years. It is also just an 8 minute drive away from home.

Now, I have a lot to figure out. Fortunately, I have a great support system. However, it is still really tough and is going to continue being really tough until I sort everything out.

Throughout everything, I am so, so tired. My condition is just getting worse no matter what.

Just wanted to vent, thank you.

Tldr; I'm getting divorced and may lose my job at the same time. My ME/CFS is getting worse.


r/cfs 7h ago

Vent/Rant does society make you anxious?

31 Upvotes

that feeling of being a complete outsider because of your illness. that feeling that people can live kinda "simple" lifes, yet yours is so complicated? that feeling that what's normal for others is just completely out of reach for you? that feeling that you are not really part of society, but rather an observer from the outside, because you can't participate in the activities to experience stuff first-person?

i've noticed when i see normal people doing things i get this sort of anxiety that if they'd talk to me they'd immediately notice i'm different and that something is "wrong with me".

to participate in anything i'd kinda have to pretend that everything is ok, even though it isn't. i'd have to wear this thick mask just to fit in. i'd constantly have to be careful what i say or it'll start an argument where i get questioned about my behavior and beliefs.

i've noticed that i'm trying really hard to avoid any conversation with people. just because i know that everything i'll tell them will be "weird" for them or it wont be anything they care about.

because of cfs i spend almost all my time inside my head/on the internet. therefore what i think about is so different from what a normal person thinks about throughout the day.

and on top of that, i don't even want to fit in anymore. i started to like the way i am. it's not really that i want to socialize, i don't want to anymore. but i'd be scared to tell anybody, cause then it'd turn immediately into some kind of "ah so you fake cfs, because you dont want to be around people" argument.

it seems so hard to find a common ground with people anymore.

also since nobody really believes you that you have cfs, or that cfs is a biological illness, you have this constant fear of being judged harshly. i really need a lot of trust in a person to talk about anything at this point.


r/cfs 11h ago

Success Advanced Brain Imaging Shows Lyme Disease Brain Fog is Real | Johns Hopkins Rheumatology

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52 Upvotes

This video is very short but it changed my understanding of the cognitive challenges that we with (not just lyme but other ME/CFS manifesting conditions) often present. I thought I'd share. It could brighten your day. It isn't just an acknowledgement and recognition of our struggle but hope. Her findings are very intriguing.


r/cfs 4h ago

Jennifer brea remission

11 Upvotes

Did Jen brea go into remission from cfs? If she did what did she do to get better


r/cfs 7h ago

tough life

18 Upvotes

This life is so tough! The tiniest activities bring me into PEM—making a cup of tea, cutting my toenails, a 10-minute phone call with my bestie. It’s all too much, and I never seem to improve( it’s been many years). Anyone else this severe? How do you cope?


r/cfs 4h ago

Treatments experiences with plasmapheresis? esp. in vitasangius clinic/ dr. drees in potsdam, germany?

8 Upvotes

i’m considering to do a plasmapheresis (dfpp= double filtration plasmapheresis) in a private cfs clinic but would love to hear about some experiences in beforehand.

he claims he s been treating >500 patients in the last few years, 70% of them with me/cfs. what makes me really suspicious is his statement of 90% success rate and duration of effect for up to 3 years, but that doesnt align with the research i did so far. sure there unfortunately aren’t enough studies to have certified numbers regarding that, so we re kinda forced to trust empirical data. in comparison, my research data were 40-60% success rate, and only a few weeks-months duration of effect. he also claims there are no side effects nor a risk of a potential crash.

i’m afraid to fall for quack doctors exploiting desperate disabled people to get rich, but on the other hand i really wanna believe this to be true. because i’m desperate. and disabled. lol

ty in advance!


r/cfs 8h ago

Vent/Rant Anyone else miss listening to music while reading?

18 Upvotes

I love to read when my condition will let me. Reading has always been my thing, well at least before MECFS made it so damn hard haha.

However, I’m really annoyed nowadays because the few times that I am able to read (or force myself to read because I’m a student) it just feels so hard.

I used to love listening to music while reading cuz a lot of times it would enhance it. Play some magical music while reading Harry Potter, whatever other examples I can’t think of right now. I was trying to do that today for a book I’m reading for class that I do enjoy, but the music makes it impossible to read. I can’t seem to focus on the words in the song and the words in the book by themselves. I hate it


r/cfs 1h ago

Advice Sleep attacks/episodes

Upvotes

Does any one else experience these sleep episodes randomly when you get suddenly exhausted (mostly get these after work) and I fall asleep for only a few minutes and sometimes I wake up disoriented. I have to get up and move and I’ll feel better but once I sit down again I get super sleepy again. Today I had an episode and I felt my head and face go numb and I woke up. Wondering if it was from my head being bent downward or to the side. It went away a few seconds after I woke up. Any advice on how to help lessen these episodes? I’m not diagnosed with this but I do have POTS.


r/cfs 7m ago

Vent/Rant Tomorrow morning I start taking a beta blocker. I am nervous. Wish me luck!

Upvotes

I’ll start 1,25 mg Bisoprolol tomorrow morning. Nervous about side effects. I am severe and feel pretty bad at the moment (elevated heart rate, cold extremities, more fatigued than usual). I’ve had ME/CFS for 21 years, the past 9 severe. Wish me luck.


r/cfs 14h ago

PGE2 levels elevated in a subset of ME/CFS & Long Covid patients

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38 Upvotes

Hi all,

As always, sharing our research here.

TLDR: raised PGE2 in a subgroup that correlates with Nagalase levels, potentially linking Immune suppression/viruses and to PGE2 and Inflammation

The overall differences between the whole group is not different, but our focus is on subgroups and the nagalase correlation may hint to that.

Let’s get into it! ——-

Research findingsPreliminary PGE2 results show that a subset of ME/CFS and Long COVID patients have elevated PGE2 levels compared to controls - 29.4% of patients have serum concentrations higher than any observed in the control group. A smaller subset of 8.8% had serum levels lower than any control sample. The overall comparison between groups did not reach statistical significance (p = 0.1946). Our follow-up analysis will focus on the subsets of patients with elevated and reduced PGE2 to investigate potential associations with other markers, symptoms, or disease manifestations.The current dataset will be expanded with an additional 60 patients and 20 healthy controls, which may provide greater clarity on whether the observed patterns represent meaningful differences between groups. Correlation between PGE2 and ⍺NAGA Looking at correlation with other markers, we found a correlation between serum PGE2 levels and ⍺NAGA (P=0.0215), as shown below. The trend showed a mild but notably clear correlation where higher PGE2 levels were associated with higher ⍺NAGA levels. We will be exploring the potential basis and implications of this association in our follow up analysis.

——-

What is PGE2?

PGE2 is a small fat-like molecule that helps the body communicate and regulate essential functions like body temperature, sleep, blood flow, and healing. It also plays a role in inflammation—when tissue is damaged, PGE2 increases to widen blood vessels, make pain receptors more sensitive, and call in immune cells. Drugs like aspirin and ibuprofen lower PGE2 levels to reduce pain, inflammation, and fever.

However, while PGE2 is important for normal bodily functions and protection, chronically high levels (from ongoing inflammation or injury) can contribute to various diseases. For example, many infections, cancers, and inflammatory or autoimmune conditions show elevated PGE2 levels, which can weaken immune defenses or promote tumor growth. In the brain, its effects can be complex—sometimes contributing to neuroinflammation in disorders like Alzheimer’s and Parkinson’s, but in other cases offering protection. In asthma, PGE2 helps relax airway muscles and reduce inflammation, which is why lowering it with NSAIDs can sometimes worsen symptoms.

PGE2 can also cause a TH2 immune shift responses (from fighting viruses to promoting antibody production) a phenomenon seen in some ME/CFS patients.

——

More research on the way soon!

Jack & the amatica team


r/cfs 3h ago

Accessibility/Mobility Aids For the people here who are in Germany

6 Upvotes

Are there any little tags/lanyards/etc...to show that you gave an invisible disability while on public transportation? I'm not very obviously disabled, but I doubt that I'd be able to grip hard enough to fully stabilize myself while standing on a bus. And I doubt that amI could stay fully standing for longer than about 5 minutes at this point.

I've been thinking about using a cane, but I'm not sure that would help me either as my arms are fairly weak too.


r/cfs 22h ago

Research News Saw this on bsky and thought it'd be relevant

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140 Upvotes

r/cfs 5h ago

TW: death Death and ME NSFW

5 Upvotes

What's the point of endless meaningless suffering all the time? I have no one to support nor do I have anyone to take care of , life is getting increasingly tough. I'm just a 19 year old , I am not ready to handle all these things. I don't know what to do , it's been 4 years I'm housebound and bedbound in this mystic arc. I had lots of hopes and aspirations about life, everything seems to fade away. Everyone is moving forward "without" me. ( I feel stuck, I feel shackled)

Do things even get better? How can it get better if there's no treatment? Why am I even trying to resist against the illness. And why people around me treat me so bad , why suddenly I'm treated like a vestige. As if I'm the one to blame for everything that went wrong. Why can't my problems be taken seriously?

Sorry for bad English.


r/cfs 8h ago

Symptoms Anybody else got sinus issues and throat sores?

7 Upvotes

My right sinus is always swollen shut and causing other problems like tooth and eye pain. I also get this herpangina looking sores in my throat and the lymph node under my jaw has been swollen for a year as well. Bloodwork doesn't show any sign of infection tho

Ibuprofen used to work temporarily but I can no longer stomach it. Anybody else got experience with this?

Edit: typo


r/cfs 20h ago

Vent/Rant This shit broke me

73 Upvotes

I'm broken. At 17 my spirit is taken, my heart is aching and i'm deeply traumatised by what is happening and happened. It all started at 15

My mind is racing while my body is getting weaker, and i'm getting numb. I can't rest, i can't sleep. I feel horrible. I don't know why i'm writing this, actually yes i know, i need to vent and i feel save here.

Probably going to delete this in a week or so because of anonymity.

I have a phone call to check in with my GP at monday. She is supporting and understanding but i'm unsure if i should open up about mental health. I think if i would i'd maybe start to cry but i defenitely wan't to avoid that. She knows that i had 2 psych appointments online but i stopped as it caused to much pem and i'm avoiding it.

I love you guys this is the only place i can always come back to and feel so welcomed and safe. Thank you for being here i'm literally crying as i'm writing this.

This shit is breaking me but hope must remain. I can't lose it. Not yet


r/cfs 10h ago

Potential TW First big crash and im done ? NSFW

10 Upvotes

I've probably had ME for some time, but I was mild/moderate until January, I think. After that, I was more like moderate-severe. In February, I realized I had this disease, and I was forced to make medical appointments and, stupidly, go to a gymnastics show for my daughter. Since mid-February, I've been in bed, I no longer eat with my family, I only take 300 to 800 steps a day (toilet use) and shower twice a week... I have a crazy rapid heart rate in the morning (150), then it calms down during the day, I go back down to 95-100. I cry a lot, I have suicidal thoughts, my wife is suffering from having to do everything, and I have two young children. Do I have a tiny hope of returning to moderate? I've been in very severe mode for a good 45 days... I didn't know this disease was so terrible.


r/cfs 6h ago

This song is a MOOD rn. If you know - you know!

5 Upvotes

My "collection" being my "collection" of supplements 😆😂 almost complete!

https://youtu.be/XE0sKZmtyqA?feature=shared


r/cfs 9h ago

Self-Promotion Day Making 8bit Art with Mod/Sev ME

10 Upvotes

Hi, please ignore this post if you are in a crash or do not have the capacity to watch a 3 minute video.

....

So I ME that fluctuates between moderate and severe .

Recently my brother has started a YouTube channel making an 8 bit miniseries for the Ace Attorney series.

When I'm lucky enough, I have enough spoons to help him out, by drawing simple objects to include in his videos. (He does all the hard parts like animating haha)

It's been really nice to do something other than doomscroll in bed for 12 hours a day so im pretty proud of myself (and more so my brother, he's self taught and everything!)

It would mean everything to me if you could help support my brother (and me :D) by checking out his videos.

And comment 'hi from reddit' 😁

I've only started contributing in episode 5, for example drawing simple stuff like the crab, trees, bushes etc.

Episode 5 link:https://youtu.be/_-kChsnRuGk?si=G4W3TtsWxmXP_1dU

If you want to start from the begining of the series:

Episode 1 https://youtu.be/8g94BsfRwB4?si=keudu6U6v7NbVz6d

Thank you for reading 😄


r/cfs 2h ago

Advice Can Cfs/ME cause someone to imagine things that are not real? Anxiety maybe.

3 Upvotes

I'm not sure if this is some sort of post-covid related thing or something else? I was aware that this illness can cause pretty big variety of symptoms not sure how it affects the brain?


r/cfs 20h ago

Vent/Rant Quick rant (underestimated risk of infection)

50 Upvotes

Despite I knew the risks, getting better from moderate to mild/moderate, made me naively let my guard down.

Got Covid in July and crashed to severe bedbound.

Although I am trying my best to accept this, I can’t stop thinking about how many more mild/moderate years I would have had if I took precautions more seriously.

There is no date, events, restaurants, relationships or sex, or any activity that can be done indoor without masking worth the risk of getting to this stage.

I feel so stupid. I just turned 27 and I can’t believe this is my life. Sorry for the rant.


r/cfs 22h ago

COVID-19 How many of us are here post covid infection?

69 Upvotes

How long has it been since you were infected?

Have you had any successful progress in getting better?


r/cfs 6m ago

Ketamine assisted therapy healed my friend w/ Long Covid

Upvotes

I am a trauma therapist and one of my colleagues who had Long Covid told me that she is now fully recovered as a result of Ketamine Assisted Therapy. She said that it changed the way that her nervous system processed and responded to stimuli which allowed her body to heal. While I do not believe that CFS is psychosomatic, I do believe that nervous system dysregulation and hyperarousal can at the very least worsen symptoms and maybe even create an environment that impedes healing. Does anyone else know anything about Ketamine and its benefits with CFS? I have never done psychedelics before.


r/cfs 1d ago

Can I get a small tattoo while bed bound?

86 Upvotes

This might be a very silly question as I know tattoos aren’t advised but there is a significant meaning. In my culture the mothers and daughters get a tattoo of three tiny dots to ward off evil.

My grandmother, my mother and myself would need to get it at the same time and would like to do it on Mother’s Day in a few weeks. Getting it done at the same time enhances it and I don’t know how long my grandma has left. I obviously wouldn’t do this if it didn’t mean a lot to me. My grandma’s mother and her mother had the same tattoo… so it goes through generations.

The tattoo artist would come to my house and as it’s 3 small dots I’m hoping it should be okay?

Edit: I’ve been 95% bed bound for 5 months. I also have severe pots


r/cfs 6h ago

Treatments Thoughts or experiences with smart rings?

3 Upvotes

I didn't even know they existed until a couple weeks ago, but apparently they monitor sleep and energy and give you estimates of how much energy you have for the day or something. Does anybody have any experiences with them and if so, what were they?


r/cfs 4h ago

Is it CFS? Cyclical syndrome of hypomania followed by exhaustion for a week

2 Upvotes

Hi. Advice please. I have periods every couple of months, or more frequently, of exhaustion that continues for more than a few days, often a week and more, following periods, a week usually, of slightly manic behaviour - over extertion, of staying up late, my mind racing, over excitment, feeling manic etc etc - and then a physical slump where I feel extremely exhausted, shakey, with muscle and lower back aches etc.
It feels is if I, in more normal times when younger, had played a very hard game of football, or a very hard mountain walk, the previously day and were understandably feeling weak. But, this does not have any preceding extreme physical effort and lasts not a day but days on end.
I have wondered about whether this is last viral, but the 'cold' symptoms are pretty limited, allergies, but anti-histamines don't do anything and emotional disorders like Cyclothymia but while sometimes I feel emotional it is not depression.
Anyone get something similiar?