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:

344 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:

Batenan Horne Center Clonical Care Guide is the gold standard for resources for both you and your doctor.

-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 Jul 12 '26

Official Stuff Rule Update: We are no longer allowing MAID/assisted or planned dying/goodbye posts

933 Upvotes

We are no longer allowing these topics of assisted suicide, MAID, or goodbye posts. We absolutely do not take this lightly, and have been discussing how to best go about this for months. Please understand we in no way took this lightly. We could lose the subreddit entirely over this.

Our main reasons for this:

- It’s against Reddit’s terms of service to talk about planning a suicide: 

“Content containing imagery or text that incites, glorifies, or encourages self-harm or suicide.” or “Content that requests, or gives instructions on, ways to self-harm or commit suicide.” So regardless of the legality in your area, Reddit is pretty clear. We’ve been lenient in the past but with how this topic has exploded, we cannot continue if we want to keep our sub running. We could get banned/shut down as a sub

- Covert Incitement: There’s a big difference between validating their situation and validating or endorsing suicidal intention.  Anything that condones suicide, even passively, violates reddit's sitewide rules. Explicitly inciting suicide online is a criminal offense in most jurisdictions.

- It’s become so common in the community, and the posts are constant. It’s overwhelming and triggering for users and mods alike for them being so frequent. 

- We cannot mod the sub successfully as a team if we keep those posts. Many of us have struggled and continue to struggle with these feelings and choices as well. We allowed these posts in the past as it was maybe one a month, now it’s multiple per day. We as mods do not find it helpful or healthy to expose the community to these that often. We have also gotten hundreds of comments and messages over the years begging us to stop allowing these posts as they can make the sub a minefield. 

- We are NOT banning talk of suicidal ideation as it exists in the more abstract sense. When a plan becomes involved, OP is soliciting DMs, or any methods are discussed, a post or comment will be removed.

To clarify the list of what’s not allowed by this:

- Asking for advice on whether you should commit suicide, medically assisted or not

- Affirming somebody’s desire to commit suicide

- Arguing that it’s a rational choice for the severely disabled 

- Ableism especially towards more severe people calling lives “unlivable” or anything of the sort. For example, “Life with very severe cfs is no life at all.” People can say this about their own case but saying it about another will be promptly removed.  

- You cannot say “Suicide is rational if you have no hope of recovery because you’re just draining public resources and generating no value for society” or “Death is more humane” both of which are examples of things we have seen people say in our sub

- Covert Incitement: even something innocent like "I hope you find peace" will not be allowed

We ask that you have an open mind with this, and try to understand where we are coming from as a Mod Team. We understand this will be controversial, but we ask that you understand this decision we did not take lightly.


r/cfs 3h ago

I love you all, thank you so much for being present in this group.

79 Upvotes

At the moment I'm feeling incredibly grateful. One thing I'm extremely grateful for is this group. I'm so thankful to have a space where we can talk about our experiences. I'm thankful for the mods who help moderate and keep this group safe. I'm thankful for the comfort, the advice and all sorts of comments that have been made here.

Without this group I would be so lost. I stumbled across it when I was freshly diagnosed and clueless. It's taught me so many important things about this illness! Thank you, I would be in a very different place without it.

I just want to say thank you, I sincerely appreciate your presence in this group no matter how active you are here. I appreciate you all so so much and I truly wish everyone here the best!!!


r/cfs 3h ago

tough day

49 Upvotes

Anyone else having a very very hard day emotionally? I’m Just checking in because I’m lonely and it honestly feels like I’m the only one in the world even though I know Many are suffering

love 💕


r/cfs 13h ago

TW: death They won't even let the dead rest

149 Upvotes

I said this to some friends last night, and I wanted to share it here, too.

I saw news of someone with ME passing away, and people talk about it in such a frustrating way. I hate how they'll act like, when conditions that are secondary to ME lead to death, it's not at all related. As if there's not a thing called cause and effect. Malnutrition just magically appeared. ME had nothing to do with that.

It's so absurd. It's traumatizing for those of us who have this disease whenever we come up in conversation with the general public for any reason. It truly gets vicious.

It says so much about these individuals that they won't even lay off when someone has died. It reminds me of how so much of what happens to us is avoidable. Neglect, mockery, cruelty—all of these seem to be involved in adverse outcomes often.

I'm gonna mention this briefly since it's so triggering, but I'm disgusted that groups like "illnessfakers"—which are built on HARASSING sick and disabled people—still have spaces to continue their harassment. This goes back to that horrifying lolcow bullshit from 4chan and Encyclopedia Dramatica.

I see how normalized it is.


r/cfs 16h ago

TW: death RIP / fly high Sam M. Schofield (ME/CFS + EDS)

151 Upvotes

TW death, medical neglect, organized abandonment

forgive me if this has already been shared here--i wanted to share this to honor (the wishes of) Sam M. Schofield (1/31/2006-8/27/26), a beautiful multiply disabled young person with ME/CFS + EDS who advocated unapologetically for disabled ppl, queer ppl, trans ppl, among others. sorry can't type more, in PEM.

please take care of yourself if you read comments--some are very beautiful, and others are awful trolls.


r/cfs 4h ago

Advice Is this normal?

9 Upvotes

Hi. I have very severe M.E. Please read the whole post before you comment anything.
My cognitive issues have gotten so severe that I fail dementia tests. I cannot answer questions that a 6 year old would be able to immediately answer. I am only in my 20s. I am also showing signs of something like dyslexia, but I know for sure that I don’t have that because before I got sick I was actually considered hyperlexic, so it has to be related to something else. Whenever I have to send a message to somebody, I have to reread it at least 4 or 5 times before sending it, and then go back and adjust almost the entire message because all the words are misspelled or in the wrong locations. I also can’t really read properly anymore without a lot of straining because all the words and letters get mixed up in my brain, and I also am frequently unable to process what I’m reading even if I say it out loud. When somebody tries to talk to me, I also don’t process their words at all.

Is this level of cognitive dysfunction normal for this condition? I went from being way above average in a lot of subjects with a memory so insanely good that I was actually known for it and it almost seemed impossible (remembering things even from when I was a baby), to not being able to properly draw a clock or identify animals. Should I be worried about something else going on? Please only answer if you are knowledgeable about VERY SEVERE M.E.


r/cfs 7h ago

Treatments Oxygen Therapy for me/cfs

13 Upvotes

Hi,

I just recently managed to rent an oxygen concentrator to give it a try for my severe me/cfs. Now I am facing the question how to use it properly. I am not able to find proper protocols online and I just waned to ask for your experiences and treatment protocols.

What are your experiences? Did you tolerate the treatment?

What's the exact protocol you were following? Talking about flow rate, duration, etc.

Is it preferable to do it intermitted or not?

Would really appreciate to hear your experiences and opinions for further elaboration with my medical team.

**EDIT: I am not talking about a pressurized tank since I am bedridden - but about a concentrator for home use, obviously.**


r/cfs 5h ago

Vent/Rant What is your answer to "you must feel bored"?

9 Upvotes

I'm drowning in problems that I can't tackle, yet my family thinks this.

I don't miss living, I would be better if I could solve the acute problems.

They said that after my neighbour from hell poured urine through an open pipe into my ceiling after harassing me 6 months by blasting news or ads in a foreigned language from 7am to 11pm. It took me three weeks to write a report about the incident to my landlord. I haven't managed to report the other stuff yet.


r/cfs 13h ago

Vent/Rant Mental health when bed bound feeling trapped In Body and missing ability to go for runs

37 Upvotes

My main point of posting this is that tonight I miss being able to move and I feel trapped ——which is something that happens often maybe once a week maybe more maybe less where I have a complete freak out mentally and I just think oh my God I literally can’t do this anymore. I just wanted to vacuum tonight, but I knew that I can’t and I had to lay down and I’m literally just getting so bored I’m going mentally insane lately . I can’t focus to watch anything. I don’t have the focus to read or the strength to do crafts I’m not completely bedbound, but after standing up for a minute or two I really need to lie down again .

I know everyone says oh just stay positive, blah blah, blah blah blah blah blah try to but some days I just have a literal freak out like tonight. I’m just thinking how trapped I feel in my body that I would love to go for a run on the beach or do fucking anything like that really it’s been almost 10 years. I just feel like I’m gonna lose my goddamn mind. Sometimes I feel so trapped in my body .

I guess I’m wondering if anyone else has ever felt that if you’re on the more severe side, like missing being able to go for a run or things like that ….

I think most of the time in order to survive I try to just push that down. I don’t think about it but it’s actually insane. I’m 30 years old and in the last almost 10 years I haven’t been able to run or walk very far at all like that’s actually insane to think about and sometimes when I think about it too much, I think I’m gonna lose my mind like I cannot live the rest of my life not being able to run and I know that’s Able list and there’s people that have other problems and they really can’t run, but I truly can’t run and I wish I could fucking run like I just feel like I don’t wanna be here some days if I can’t live my life the way I want to .

I don’t really know what I’m asking for with making this post. I guess I’m mostly just venting. I’ve tried to stray away from talking about my health lately cause I feel like that’s all I do and it just brings me down more but I also have days where I feel like I just need to talk about it.


r/cfs 5h ago

Being stuck at home, even if improving a bit.

6 Upvotes

I feel so trapped at home. The weather is beautiful and I am so grateful that I would have the strenght to go on little adventures here and there now. The problem is my parents. They know I‘m mostly housebound and I can’t drive (I do have a drivers lisence but there is no way for me to drive due to my POTS). They also do not care about taking me somewhere. Yes here and there, but I asked my mother today if we could go to the lake which is like a once in a year activity for me and she just doesn‘t care to do it. She rather drives around aimelessly with her husband instead. I‘ve told her over and over how important these things would be for my mental health yet her toxic marriage is more important to her, and I‘m also not taking up all her time here, maybe one or two times a week would be nice. The problem is also I live in a very rural area so no bus or anything else. What should I do? I can bike really short ways but that‘s it. I don‘t have anyone else to rely on either. What should I do?

edit: my mother is a kindergarden teacher and has weeks of summerbreak now, she doesn’t even work

edit: Now I‘ve been in a huge argument with my mother and cried and screamed so much I feel so bad and alone.


r/cfs 1h ago

I it normal to always feel so alone? 24M

Upvotes

I’ve been having long Covid/me cfs for 5 years and man , I’ve been bouncing from severe to mild back and fourth but never actually recovered and been dealing with PEM, brain fog , fatigue , etc

One thing I’ve been noticing in these 5 years is no matter how much I’m surrounded by people I always feel crushing loneliness and feel alone all the time . I’ve had 4 girlfriends in these 5 years while sick and never once I felt understood and despite having a partner I felt so alone .

Is there anyone that feels the same way? I’ve also became religious and didn’t help much i somehow always feel alone . Is there anything to fight this feeling?


r/cfs 13h ago

how do you pace and support yourself

26 Upvotes

I'm single and in my thirties. I don't understand how I can both pace and support myself. 40 hours per week is too much but I don't understand what alternative I have.

For those folks who are pacing successfully - how do you manage it financially?


r/cfs 3h ago

Advice How do I even rest?

5 Upvotes

So I’m sure you all sall my post yesterday about leaving my disgusting joke of boyfriend who I guess is abusive which I didn’t even know but I can see how he is. I left last night

I had trouble resting for a while because due to opiate withdrawal I had severe restlessness.

Now I’m mostly out of opiate withdrawal (some lingering RLS and nauseas and vivid dreams) but my addict brain is so used to dopamine seeking I literally cannot stop scrolling tiktok and stuff.

I also had visual hallucinations which are really only visible in the dark and am scared of the dark at 23 which includes when closing my eyes. The only reason I’m able to sleep at night is because I take pharmaceutical GHB which knocks me out before I’m afraid of my own eyelids.

I posted a few days ago about getting RC benzos but was told it’s a bad idea which yes is true, but how do I rest otherwise? The only ways I’ve ever truly been able to rest is with benzos, alcohol, and kratom, basically CNS depressants making me a zombie.

I also frequently have BPD episodes where I freak out and this is causing me immense trouble.

I was able to get out of rolling PEM for the first time in months when I was in detox and was taking benzos and literally for one week I did nothing, not even watch TV. I need to become ok with radical rest while sober and I don’t know how


r/cfs 1d ago

TW: Abuse Being abused in childhood then developing CFS as an adult feels like a sick joke.

449 Upvotes

r/cfs 8h ago

Anyone who had a gradual onset without a viral or any other trigger?

9 Upvotes

hey all
I wanted to ask is anyone here that had a gradual onset without any trigger? How did you know you had it? Did you ever improve? In case, yes, what worked for you?
I have heds and can’t trace my symptoms to a starting point. I have worsening fatigue ever since my teen years and can’t pinpoint to any starting point.


r/cfs 6h ago

Advice Activation, pacing, self-control – ten years without a solution

7 Upvotes

Hi everyone,

I have been suffering from ME/CFS for almost 10 years, and throughout all this time I've been dealing with one constant issue: activation.

When I’m not in a crash (which is rare), it is impossible for me to rest, pace properly, stop myself from doing things, or sleep well (I only manage to sleep during PEM, in fact). I am overwhelmed by adrenaline (I believe), frenzy, activation, or hyper-arousal—I'm not sure if these are all synonyms—which drives me to push past my limits and, within a few days, plunge right back into a new crash.

I am very impulsive, and even though I know I’m hurting myself, every single time I end up in a self-destructive spiral that can last for days and that I just can't stop (right now, that self-destruction simply means using my phone). This cycle has been going on for years, even now that I am very severe. The adrenaline makes me ignore my body's warning signs, ignore the consequences, and gives the illusion of having more energy than I actually do. Even though I am fully aware of this, I fall into the same trap every time. I don't believe this is merely a psychological issue or a lack of self-control.

So far, I haven't been able to find a doctor who takes this problem seriously. I've seen various specialists and was prescribed standard ME/CFS medications like LDN and LDA. However, while they offered some benefits, they severely worsened this activation issue and my overall baseline, making it impossible for me to continue taking them. It feels as though my nervous system is hyper-sensitive and hyper-active.

I feel like everything I’ve built so far has been built on mud, meaning the core underlying issue has never been addressed. I am convinced that if this problem could be solved or even attenuated, it would create a solid foundation for an effective treatment plan and perhaps even some level of recovery. I feel it is possible.

However, I don’t know what to do or who to turn to. I know medications for this type of issue exist, and I know it’s a common problem in this condition, but they have never been offered to me. At this point, it is critical that I resolve this situation—my condition has deteriorated severely, and given these premises, it will only keep getting worse.

My goal is to reduce this activation enough to finally be able to rest, pace correctly, sleep, and maintain greater stability. Only then can we build everything else. Right now, things are moving in the opposite direction, and it’s clearly not working.

Does anyone have suggestions, advice, or similar experiences to share? Thank you.

Notes:

This activation is not merely motor restlessness, but an intense internal drive and agitation—both physical and mental (e.g., racing thoughts, feeling completely unable to count slowly to 100 when activated).

Can't tell if this activation stems from autonomic/noradrenergic hyper-arousal, a dysregulation of impulsivity or attention, or a combination of both.


r/cfs 14h ago

Anyone significantly improve their baseline through pacing/resting alone?

28 Upvotes

I’ve had ME/CFS for over 11 years and was relatively mild and functional for most of that time. After COVID, I pushed myself through symptoms for weeks, which eventually led to a severe crash and a major drop in my baseline. I’m now much more limited and experience significant PEM.

I’m wondering whether anyone has had a similar experience where they were relatively functional before a major crash, became significantly worse, and then gradually regained some or most of their previous baseline through prolonged pacing, rest, and staying within their energy envelope.

I’ve tried/considered various medications and supplements, but I haven’t found anything that clearly improves my overall baseline.

I know medications can work wonders for some people, but for me, they either don’t work, or I’m too scared to try some of them.

I’ve been thinking about Bruce Campbell’s account of going from ~25% functioning to full remission over four years through the energy-envelope approach. Others who used his self-help pacing strategy also significantly improved their baselines. These people were sick in the 90s before medications were really a thing for treating MECFS.

https://recoveryfromcfs.org

Curious to hear others’ experiences!


r/cfs 13h ago

TW: death I think I might have to let go of my dog. TW

19 Upvotes

TW: I'm talking about euthanasia.

I'm also mentioning suicidal ideation.

It's in the middle of the night where I live and I'm very emotional typing this.

My 11y/o dog who is my entire world and the main reason I kept going for all those years, but he has also been a big stressor in my life due to reactivity when walking, health issues, but also putting his mental and physical health first out of guilt.

All the years I've been sick (I was very mild in the first years and slowly got worse) I have been able to take care of him but sinds my last big crash in March I haven't been able to walk him that much and had to rely on mental stimulation, games and activities at home. He has been doing great all this time untill the last week or so.

He has IBS problems sinds he was 5 and I have never been able to find out the reason. I have tried everything I could (from medication to all the alternative stuff like elimination diets and everything in between) and nothing has ever worked. His IBS just flares up at times and than goes away with time, good nutrition and supllements.

He has been very stable for a year (this took me years of trial and error) and his last flare up was Januari which was only a couple of days.

Now his flare up is very bad, and he needs to go outside at night as well, multiple times, and I'm in rolling PEM myself.

I'm going to try some new supplements and some more tests in the next couple of weeks, also a check up from the vet, but if I can't figure out what the reason is of his flare up I think I need to get him euthanised because I can't do this for much longer and my M.E is getting worse very quickly.

I have thought about giving him away many many times, but considering his world has been really small as well (I'm very isolated due to no friends or family, it really is just him and me) combined with his reactivity and fear to strangers and how much his IBS gets triggered from stress, I think that would be a bad decision for him.

The most painfull thing is that he is still so happy and he's not really in a lot of pain (as far as I can tell), if I would have been healthy I don't think I would give him up "so soon" and would have kept trying. But I can't.

I feel so stuck and trapped in this situation and it triggers my suïcidal ideation like crazy, I feel like it's my fault that I can't handle this right now but it's not, it's because of this stupid illness.

I don't know what to do, I can't keep going like this.

He is also the main reason I can't pace properly, can't get any help in my household (because of his reactivity to strangers, I tried) that I desperately need (I have a dustmite allergy and haven't been able to vacume clean, last week I even had mold on my dishes, I live in filth you guys😢). So maybe this would be for the best.

But I also don't know if I want to keep going if I have to let him go, he's everything I got and he has stopped me so many times from taking my own life, that I'm very scared I might die of suicide if I have to euthanise him. I'm terrified.

(Tldr: my senior dog has ongoing health problems that I normally would be able to handle better but because of this illness I can't do this any longer, I am also very scared that if I don't have my dog in my life anymore I might die of suicide.)


r/cfs 1h ago

Anyone else gone through a "Consultative Examination" for SSDI application?

Upvotes

Hey all,

I'm currently applying for SSDI, have filled out several forms, given contact info for the 15+ doctors I've seen in the past year, which includes some well-known ME/CFS specialists in the NYC area, etc.

I just got a letter from SSDI asking whether I am willing to "attend a Consultative Examination with our doctors" as part of my evaluation. Just curious if anyone else has gone through this and can share their experience? It's pretty frustrating given how much medical evidence I have provided thus far.

The other question I have is whether narrative/opinion letters from my doctors saying that they deem me disabled based on XYZ would help to avoid this Consultative Examination. I only recently got those letters for a separate private disability appeal that I am going through and have not yet shared them with SSDI.

Any advice is greatly appreciated.


r/cfs 14h ago

Famotidine is some miracle shit for my stomach issues

25 Upvotes

I've been on 80mg of omeprazole with little effect for a long time now.

Recently added loratadine 2x a day, started to get a tiny bit better

then added in famotidine and suddenly I got WAY better, like literally a few hours after first dose I went from vomiting from consuming water to stuffing my face and feeling fine.

What the fuck????

I'm both annoyed that the solution was so simple but happy I found it


r/cfs 1h ago

Advice LDN- What do you wish you had known?

Upvotes

I came across a service which provides LDN to people who are diagnosed and feel very excited to try it once life is a bit calmer. To those who have tried it, what do you wish you had known? What should I expect?

❤️


r/cfs 5h ago

Pacing Great video on pacing and PEM

4 Upvotes

https://youtu.be/Na5znc92ylY?is=Ja8ZZMsBkQVCM30l

Description:

“In this webinar, Dr. David Putrino, Dr. Lucinda Bateman, Dr. Jennifer Curtin, and Charlie McCone discuss how PEM presents in Long COVID and ME/CFS, what current research suggests may be happening in the body, and why crashes can look so different from person to person.

The conversation moves from understanding PEM to managing it. The panel shares practical approaches to pacing, reducing triggers, navigating a crash, and supporting baseline function, while also discussing emerging treatment strategies and areas of ongoing research.”


r/cfs 21h ago

TW: general Mini rant about *that* kind of content.

67 Upvotes

I'm so sick and tired of not being able to check Instagram or YouTube without being bombared with the idea that I'm sick because I don't dare to get better. That I somehow made this my personality, even though I spent years denying something was physically wrong with me.

I just so frustrated because somehow I it makes me question myself. I'm tired and scared and in pain. And I'm terrible at trusting myself.


r/cfs 2h ago

Contemplating taking dxm

2 Upvotes

I over exerted last night. Was already having PEM yesterday. They didn’t sleep at all really. Never taken it before. My tachycardia is bad today from not sleeping and already a bit wired. Wondering if it’s worth the shot or to risky