r/cfs • u/premier-cat-arena • Nov 10 '24
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.
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.
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
-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
a research summary from ME Action
Help applying for Social Security
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 • u/AutoModerator • 6h ago
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 • u/sadbutshowedup • 5h ago
How do you spend your weeks?
Is there a dissociation from the world when you do go out? Like wow all these people exist and live “normally”?
Or do you just feel so safe being at home and can’t wait to get back?
I feel like the way I described it doesn’t make sense but it’s the best I can do right now.
r/cfs • u/valgalcurnutte • 12h ago
TL;DR: Full recovery may be uncommon, but we don’t have enough evidence to claim it’s impossible or that everyone who recovers was misdiagnosed. ME/CFS research is severely underfunded, and we still have so much to learn. We can acknowledge how devastating this illness is without dismissing recovery stories or treating the prognosis as predetermined.
One thing that’s been frustrating to me in both r/cfs and r/mecfs is how discussions about recovery can fall into two extremes.
On one side, there are people who believe everyone can recover and all symptoms are reversible. On the other, there are people who believe recovery is impossible and that anyone who claims to have recovered must have been misdiagnosed or never had ME/CFS to begin with.
I recently commented on a post in this sub saying that I don’t think we should automatically assume everyone who reports recovering is lying, and I clarified that I wasn’t defending unproven treatments. I got a couple of downvotes, which honestly felt unfair when I was trying to express a pretty moderate position. It made me wonder whether there’s enough room in these communities to acknowledge uncertainty without being interpreted as minimizing the illness.
I don’t think the current evidence supports either extreme. ME/CFS research is severely underfunded relative to the disease burden, and there are enormous gaps in our understanding of its underlying mechanisms and long-term prognosis. Recovery rates haven’t been well established. Some people recover, others improve but retain symptoms and limitations, and others remain ill or worsen. We simply don’t know enough to make definitive claims about every patient’s outcome.
Claims that everyone can completely reverse their symptoms can create false hope, unrealistic expectations, and feelings of failure when recovery doesn’t happen. But insisting that recovery is impossible or dismissing everyone who reports recovering reinforces hopelessness without sufficient evidence to justify that certainty.
Medical history has shown that diseases once considered incurable can become treatable or even curable as research advances. That doesn’t guarantee the same outcome for ME/CFS, but it’s a reminder that our current understanding isn’t necessarily the final word.
I understand why people with ME/CFS are skeptical of recovery claims. Patients have a long history of being dismissed, blamed for their symptoms, and sold false promises. That skepticism is justified, but I don’t think it should mean automatically assuming that everyone who reports recovering is lying.
We can acknowledge how serious, disabling, and potentially lifelong this disease is without ruling out the possibility of recovery. I wish there were more room for good-faith discussion of this uncertainty, rather than treating any suggestion that recovery is possible as minimizing the illness.
We deserve honesty about what we know and what we don’t, without false promises on one end or absolute hopelessness on the other. Above all, we deserve far more investment in research so we can move beyond speculation and start getting meaningful answers.
r/cfs • u/Free-Yam3028 • 13h ago
Mine was to sprinkle holy water over me lol. I wasn’t even mad, it was too hilarious
r/cfs • u/Crashing_Sunflowers • 12h ago
Does anyone else relate? I am so weak, so exhausted, struggling day to day. It’s like I’ve been drained. Obviously I’m not trying to say ME/CFS is literally a vampire, but it certainly feels like it sometime.
r/cfs • u/Few_Dog279 • 4h ago
I’m very severe and often find it almost impossible to speak when someone first enters my room. Even though I want to talk, getting words out feels incredibly difficult.
But after about 5 minutes, it gets much easier, and I can suddenly talk relatively normally. I don’t seem to experience PEM afterwards, either (as long as I don't talk too much).
Does anyone else experience this? It feels like I need time to warm up before my brain and body can manage talking.
r/cfs • u/Verosat88 • 22h ago
If anyone here is near Oslo and wants to join, the demonstration starts at 3 p.m. and ends at 4 p.m. It will take place in front of the Parliament building at Eidsvolls plass. Beds will be available for anyone who needs to lie down during the event.
For those who cannot attend in person, there will also be a livestream on Facebook Live feed link here . You can also participate via Teams Teams link here.
One important thing to note: if you join via Teams and keep your camera on, you might be projected onto a large screen at the event.
I'm pretty sure everything will be in Norwegian, so it might not be the most interesting or insightful event for those who don't speak the language. Regardless, I think having the numbers to show afterwards would be valuable.
r/cfs • u/Strong_Aerie_9031 • 7h ago
I just end up writing really sad/depressing things that always comes up even when i try to do happier things. Its really embarassing and used to be a lot worse when i was younger and not on any meds. I want to connect with people but i feel ill about how sad it is.
I dont know, it makes me feel like i cant connect with people through art because of how much it makes me upset (also also not wanting to make anyone else feel that way)
Did this happen to anyone else?
r/cfs • u/Financial_Owl8105 • 1h ago
TDLR : benzo taper +severe ME+ MCAS+ POTS
Severe ME/CFS + MCAS + POTS + Benzo Destabilization after Diazepam & Cinolazepam Chaos. Need Urgent Advice
I am in a \*\*severe ME/CFS crash, bedbound\*\*, and completely destabilized due to a chaotic benzodiazepine situation combined with severe MCAS, worsening POTS, and extreme environmental stress. My family and environment completely misunderstood my illness, forcing me into high-stress situations where I broke my pacing, which led to this medication crisis. I have no literate doctor to guide me and I am desperate for advice on how to survive this.
\*\*My Medication History & Recent Chaos:\*\*
\*\*Baseline:\*\* I was on \*\*Cinolazepam (Gerodorm) 40mg\*\* for sleep. Tapered to 10mg suffering but not this BAD. Mild symptoms.
\*\*The Trigger:\*\* Due to severe environmental stress and lack of support, I panicked. For about a month, I added \*\*5mg of Diazepam (Valium)\*\*alongside it, but it did not help me. I wanted to cross over fog a long acting benzo. Made me paradox.
\*\*The Switch:\*\* I then switched over to \*\*Xanax (Alprazolam) 0.25mg\*\*.
\*\*Current Status:\*\* The Xanax helped initially, but now everything has completely backfired. I am experiencing severe \*\*interdose withdrawal\*\*, intense physical panic surges, autonomic storms, and profound insomnia. Every single thing I take triggers my hyper-reactive \*\*MCAS\*\* (severe acid reflux, tachycardia, internal vibrations).
\*\*Crucial Context (Severe Paradox & Neurotoxicity):\*\*
\*\*SEVERE POTS WORSENING:\*\* My POTS is now at an all-time worst. My heart rate and blood pressure are fluctuating wildly, making it terrifying to even sit up or move.
\*\*EXTREME PARADOXICAL REACTIONS & NEUROTOXICITY:\*\* I feel like I am experiencing acute neurotoxicity. My central nervous system is so fried that \*\*every single sedative, sleep aid, or supplement I try gives me a massive paradoxical reaction\*\*, sending my body into a violent adrenaline surge instead of calming me down.
\*\*MONTHS OF NO REAL SLEEP:\*\* I have had \*\*zero real, restorative sleep for months now\*\*. I feel like my body is hitting a fatal point of exhaustion and I am terrified that I cannot survive this level of sleep deprivation.
\*\*Current Symptoms:\*\*
Continuous adrenaline surges and waking up in sheer physical panic that doesn't stop.
Severe unrefreshing insomnia / total inability to sleep.
Burning stomach acid/reflux and violent heart pounding (tachycardia).
Severe post-exertional malaise (PEM) from being forced to get up to use the restroom.
I developed SFN, i cant feel my legs, just tingiling everywhere.
Eating makes me crash. Im atrophied, dehydrated.
Light, sounds sensivity horrible.
Constant heart tremoring, beta blockers doesnt help
Forehead burning
No windows at all
Horrible MCAS
Sympatetic overdrive
Diareea, vomiting
My hr goes up to 130 sitting on the toilet, thats how bad is my exertion intolerance.
Muscle weakness
My central nervous system is completely blown out. I feel like I have ruined everything because of the stress forced upon me. I cannot figure out how to restabilize my baseline so I can even attempt a proper, slow taper.
If anyone with Severe ME/CFS, POTS, and MCAS has survived a botched benzo switch, extreme paradoxical reactions, and severe interdose withdrawal, please tell me: \*\*What do I do now? How do I stabilize when my body treats every dose like a paradox poison? My body can’t heal in this figh or flight its impossible i
saw anyone as bad like me. :(
what can i do?\*\*
Im s\\\*icidal everday i can’t live like this, its been years of suffering with LC and ME. I can’t even remember what feels to be “normal” and have a good day. I don’t even have the energy to end it.
r/cfs • u/MinedCaesar7 • 18h ago
Ldn group did not differ in fatigue nor pain after 16 weeks compared to placebo in long covid
r/cfs • u/Objective-Taro-8919 • 22h ago
Sorry for long rant
I unfortunately heavily rely on uber eats for food
I really don’t like the app and have deleted it many times but reluctantly re download it as I have no other choice
I was already in a crash this week but my sister last minute had to work so I had to watch my niece which isn’t that bad as she is 9 and just came to my apartment to hang out
I ordered her a boba as she loves it and doesn’t get them often
I already was expecting it to be a hassle as the male drivers always act like it’s their first day on earth (never had an issue with a female driver)
Took him over 30 mins to get into my building even when I spoke through each simple detail but again they all do so I don’t care at this point
He kept demanding I come outside
I refused and told him im disabled which I shouldn’t have to as it’s an option for him to bring it to my door
When he got to my door he demanded I open the door as he wanted the see me
I refused and told him to leave it at my door
He kept demanding and I didn’t want to disappoint my niece
When I opened he got visibly angry and laughed in a very intense intimidating way and said “YOU ARE NOT DISABLED”
“ where is your disability,show me now” while getting closer and closer and looking me up and down
He then said I didn’t deserve my order and said “you will not get it you’re not disabled you don’t deserve this” and walked away cursing and shouting
My niece was confused and didn’t understand
I now feel so much worse and im just baffled
All on my birthday too ahaha
r/cfs • u/thepensiveporcupine • 13h ago
They seem to think I just like laying in my bed all day. They keep urging me to see my doctor and seek out treatments, but I don’t want to risk my already low baseline by trying medications that will likely harm more than help. I’ve already deteriorated from the meds I’ve tried recently. I’m done seeking answers because I’ve accepted that we’re in the dark ages of medicine in terms of understanding and treating the illness, and there won’t be a treatment in time to stop my inevitable decline into extremely severe.
They think I’m giving up, while I see it as being realistic about my options and how my life will end. I know that they don’t want to accept that. My problem is that they keep saying “Well, if you say you want to recover, staying in bed all day alone is only gonna make you worse.” And you know what, I can’t even argue that rest will make me better because it hasn’t. There’s no guarantee it will. So I don’t even have anything to argue, so I just keep saying that I’m gonna get worse no matter what, because that seems to be what’s happening. And to that they say “Well then what do you have to lose?”
Idk anymore. I’m carrying the burden of the knowledge that I have a degenerative illness completely alone. Nobody can help me, and I don’t wanna waste more time and energy doing shit just for the sake of my parents so that they don’t feel guilty for being “complicit” in my suffering. I know it must be hard for them to interact with judgmental people who probably think they’re enabling me. I understand how isolating it is for all of us but I wish they didn’t take it out on me.
r/cfs • u/anomalywife1991 • 8h ago
Hello, been suffering for about 2.5 years. I have 4 children ages 7, 5 and 3yo twins. My husband works away from home 4 weeks at a time with 2 weeks off. I recently was diagnosed by a neurologist with ME and im truly struggling to understand pacing given my situation. I do not have family in town to help me. I have been very sick since last summer when things ramped up but have had to push through to maintain my children's quality of life. It makes me worried I will never heal. I currently see a neurologist every 6 months and have been referred to a complex chronic illness program but the waitlist is 2 years. I have seen a naturpath who has experience and who has made suggestions and prescribed me LDN, as well as lifestyle and diet adjustments and a few supplements on top of what I already take.
My symtoms include:
Severe fatigue
Crashes lasting months (I only get up to care for my children and tidy)
Muscle fasiculations - body wide very severe at the onset but have settled significantly
Intermittent cramp like pain in random spots
Dizziness when standing (holter monitor test clean and blood pressure is normal)
Burning patches, wet sensations, tingling, perceived limb heaviness (i can not stress how horrible this is)
Trembling hands
Irritability
Brain fog (severe - stop speaking mid sentence i literally cant connect to my brain)
Urinary urgency with no uti
These symtoms move around sometimes daily, weekly, monthly but they persist constantly just at different levels of severity.
Medications:
Buspar
LDN
Ativan
Supplements
B12
D and K2
Iron
C
Omega 3
Creatine
Electrolytes with atleast 2.5 liters of water per day
Tuarine
Glycine
Magnesium Byglycinate and Malate
B5 (with other B's)
Licorice Root
Glutathione
I have had an MRI - clean.
Holter.
Lyme
A battery of other blood work and tests all of which I had to beg for.
Please if you have ANY TIPS for pacing or other helpful advice I am open to anything and thank you in advance.
I also use a shatki mat and lots of slow restorative stretching when im able. I am trying to hard to do all the right things. I just want to feel better for my family who need me 😞
r/cfs • u/Scary_Host8580 • 11h ago
This is a crazy question, but has anyone found ways to make art through fatigue? What kind of media did you use?
I have recovered somewhat and I'm really bored. I've tried digital art but I'm tired of staring at a screen.
r/cfs • u/Free-Yam3028 • 14h ago
I recently started chatting with people from a local ME group, and after talking to 7–8 people, I realized that I seem to get PEM waay more easily, and the consequences are much worse ( I don’t recover).
The things they’re able to do are things I couldn’t even do when I was way milder. Of course, they struggle a lot and it sucks, but they seem to be able to remain mild or moderate. Meanwhile, I experienced catastrophic crashes from much less activity, even when I was still mild or mild-moderate.
I’m just trying to understand what’s going on. Has anyone else had a similar experience? Is it up to different subtypes?
r/cfs • u/whimsical-mind53 • 19h ago
Dear lovely friends!
If you have energy and would like to, please sign this petition for the Hungarian ME/CFS community. We’re asking for better healthcare. Right now there isn’t a doctor in the whole country who understands this illness and is willing to help us.
https://szabad.ahang.hu/petitions/az-me-cfs-ben-szenvedo-betegek-helyzete-magyarorszagon
You just need to click on “ALÁÍRÁS” then give your forename, lastname, e-mail address and postcode, click on the “Nem, köszönöm” and finally on the red sign “ALÁÍRÁS”.
This would mean a lot to us if you could help! 💙💙💙 Thank you so much!
r/cfs • u/MulletXPornstache • 21h ago
Hello. Was resting and I came up with a thought. If you could have a break from this illness, for 24 hours, what would you do?
Would you take it slow, enjoy the small, but long lost pleasures like a cup of coffee, walking, taking a shower etc. Or would you go all out on something big?
r/cfs • u/justaguy19299 • 5h ago
Hi everyone. For a bit of back ground I've recently met someone with Ehlers Danlos and POTs who I've started seeing casually. She's pretty home bound because of her illnesses and I whenever I hang out with her I can see how hard her daily struggle is. I've never had a serious disease or medical issue myself and it's been an eye opening experience seeing how hard life can be for someone dealing with so many medical issues.
I really really like this girl, shes pretty and so intelligent and it breaks my heart seeing her deal with her illnesses because I can see how much potential she has. Ive helped her out with some bills and chores when we hang out to just to try and make things easier for her but I don't want her to think I'm doing these things for her out of pity or guilt. I just genuinely like her. She makes me happy when I'm around her even on the days she's struggling.
Im looking for advice from others in a similar position on how best to navigate this kind of relationship. I want to support her as much as she needs or wants without being overbearing as we have only known each other a few months. I also want to know what are things I can get her or do for her that might make her life easier or make things more comfortable. What are boundaries that I should be cautious off? When she's in pain should I give her space or offer to help?
I'm in a good financial position but I don't want to make her feel like she's a charity case by paying all her bills or buying her lots of gifts. I also don't want to make her feel like I'm support worker by offering to do all her chores (even though I would gladly do all of them). I guess I'm just looking for advice on where to draw the line with helping her manage her illnesses and also making her feel like she's an actual person that I'm interested in and frankly fallen a little head over heels for.
Thanks for reading and any advice or comments on relationships people dealing with this have experienced would be very greatly appreciated.
r/cfs • u/FlanInternational100 • 1d ago
I was an athlete for years and literally all my life I lived really healthy.
That resulted in nothing but severe health problems even more than CFS alone.
So now when I have severe CFS I literally stopped caring for having good and nutritious meals, any kind of routine, etc. because of multiple reasons.
First is I dont have energy at all to plan, cook, schedule anything. At all.
Second is, I LITERALLY feel NO DIFFERENCE when I eat really healthy for months or eat nothing but a bag of chips whole day for weeks. I mean seriously no difference.
Maybe the only thing that could affect this is if I were more prone to becoming obese I wouod change it but since I am ultra skinny and basically anorexic-looking I seriously dont care. And I dont care for possible long term outcomes because my will to live in general is near zero.
r/cfs • u/skillmeyer • 17h ago
I just heard someone dear to me say that a family member "claimed that" they had fatique and dizziness after COVID in 2022. He is now very sick and they have called his problems autoimmune which in all fairness to him sounds much more scientifically plausible, as opposed to the "CFS" thing. I'd love to share a good 2026 readable article about ME/CFS that is legit. Ideas welcomed!
r/cfs • u/AllTheModalities • 21h ago
im already registered as a healthy participant in different study databases, i reached out to my representatives, i talk abt me/cfs however possible with coworkers, friends, and on social media, and im working with meaction as a volunteer. im debating putting up posters, or doing a fundraiser?
you all are incredible and awesome people and i want to hear from you guys!! to quote my partner, i “am the energizer bunny“, and i want to use my energy to help in any other ways i can!!
r/cfs • u/fizzyapple_45 • 13h ago
I haven’t been told this outright but every little comment is passive aggressive and adds up and this is what it really means.
Everything that’s ever said to be my family is that they really detest the situation, they always default back to denial and shame, disbelief and blame because even if they believed me for one moment, it quickly vanishes, morphing back into blame and back to square one. I’m not sure I’ve ever even moved out of square one.
I feel like everyone just says “I am never going to be okay with you until you are well, you have to get well (because I can’t handle it)”.
I don’t know that a human, me or any of us can take this amount of daily mental suffering on top of the physical.
I just needed to let it out. Thank you for letting me have a moment. Love to you all.
r/cfs • u/allthethrowaway420 • 18h ago
so Ive noticed that with cfs, there's 3 groups: people who can't seem to stop losing weight (even when packing on calories), people whose weight stays somewhat predictable, and people who keep gaining weight (even when eating very few calories).
has their been any research on what this means for the different subtypes? because there are obviously different things going on to cause each phenotype. I was hoping this could help guide which treatments to consider?