And when I questioned if that would include ME/CFS, given it is so intractable, she says those are the conversations they’re having. Basically all disease classes.
I could write a long reflection about this, but as you can imagine, I don’t have the energy for it lol.
While it’s a sad reminder, I don’t want it to be a sad day. I’m sad often enough. I’m thinking of ordering sushi to celebrate surviving one year with ME/CFS. Do you do anything to “celebrate” your anniversary?
I was worried that visiting her would be too much for my body & turns out I was right. I know she “means well” but…
Don’t you think if I had any level of control over this that I would choose to not be this way? I can’t imagine someone actively choosing to live like this. I’m exhausted every second of every day. And doing things that healthy people don’t have to think twice about (traveling on a plane, swimming, going out to dinner, showering) cause my body to shut down days later. You act as if I have a choice in the matter. That if I just “try harder” I’ll feel better. That makes me feel unbelievably shitty when all I’m doing is trying & it’s not working. Makes me feel like it must be my fault somehow. Even though I’d give anything to not be like this.
My whole body is literally shaking and buzzing from being vertical. My heart rate is 133 bpm. I’m sure that’s fine. But don’t worry. I’ll push myself now and hopefully won’t crash again til I get home so you don’t have to deal with the consequences.
I’m moderate to severe, been ill for four years but have had chronic pain for almost ten years now. What I’ve noticed is my mom never seems to like talking about my illness. She never brings it up, I always start the conversation. Didn’t get diagnosed until this year but I already had fibromyalgia. Every time I bring it up she ends up saying “well it can always change, you might get better”. It’s like she wants to stay super positive and is almost triggered by me talking honestly about how sick I am. Like she doesn’t want to accept that I am severely ill. Even ten years ago when I first developed chronic pain she never took me seriously and got me to see a doctor.
She has always had this toxic positivity when it comes to my feelings and I grew up with childhood emotional neglect where I was never allowed to have big feelings. But I somehow hoped maybe now she would see me. I know she loves me, but I wanna be able to talk about my illness and how it affects me. Ofc I still have hope but I can’t live off of hope. My best friends mom is more invested in my illness and cried when she and my bff talked about me needing a wheelchair…
Idk. It just hurts. Can anyone else relate?❤️🩹
TL;DR: A normal B12 blood test and the absence of anemia do not always rule out a clinically significant B12 deficiency, especially when neurological or psychiatric symptoms are present. The post argues that tests such as MMA, homocysteine, and intrinsic factor antibodies can sometimes identify problems that a standard serum B12 test misses.
Been reading through this sub for a while and wanted to put together what I've found, since I think a lot of this gets missed. A lot of posts here mention getting a normal B12 result and moving on, but the range doctors use in the US to call something normal is honestly kind of a mess compared to the rest of the world; in the US the cutoff for deficiency is usually somewhere around 200 pg/mL, but Japan and several European countries use 500 pg/mL as their deficiency threshold, based on neurological criteria rather than just hematological ones. That's not a small gap. The US limit is calibrated to catch anemia, a late-stage sign, while neurological symptoms show up well before that. One landmark study looked at 141 patients with neuropsychiatric symptoms from cobalamin deficiency and found that 28% of them had no anemia or macrocytosis at all, meaning the standard hematology-based screening completely missed them even though they were clearly, measurably deficient.
The bigger issue is that a normal or even high serum B12 number does not mean B12 is actually being used at the cellular level. Serum B12 measures how much is floating around in your blood, most of it bound to a protein called haptocorrin that isn't even bioavailable; only a small fraction is bound to transcobalamin, which is what actually gets delivered into cells. That same 1988 study found markedly elevated methylmalonic acid and homocysteine in these patients despite normal blood counts, and every single one who got treated improved, which is why those two markers are considered far more reliable than serum B12 alone.
Then there's the genetic piece, MTHFR. This gene codes for the enzyme that converts folate into its active form, methylfolate, which the methylation cycle needs to run properly. B12, specifically the methylcobalamin form, works as a cofactor in that same cycle, converting homocysteine back into methionine. If you have an MTHFR mutation, especially homozygous, that pathway can bottleneck regardless of how much B12 is sitting in your blood. So you end up with someone who looks fine on paper but is functionally deficient because the methylation cycle downstream isn't processing it.
Symptoms of B12 deficiency, broken down by system:
Neurological:
peripheral neuropathy (tingling, numbness, or burning in hands and feet), pins-and-needles sensations, Lhermitte's sign (electric-shock feeling down the spine with neck movement), balance problems and unsteady gait, muscle weakness, exploding head syndrome, saw-blade or electrical sensations in the head, restless legs, tremor, and in advanced cases subacute combined degeneration of the spinal cord.
Cognitive:
brain fog, memory problems, word-finding difficulty, slowed processing speed, difficulty concentrating, and in severe or prolonged cases progression toward dementia-like presentations.
Psychiatric:
depression, anxiety (including a pattern of morning anxiety some people report), irritability, mood swings, apathy, and in documented but less common cases psychosis, paranoia, hallucinations, and symptoms indistinguishable from schizophrenia until B12 is corrected.
Fatigue and energy:
fatigue that doesn't resolve with rest, post-exertional crashes, general weakness, and low exercise tolerance.
Cardiovascular:
heart palpitations, shortness of breath on exertion (often tied to associated anemia), and in some cases chest discomfort.
Gastrointestinal:
glossitis (a sore, smooth, or swollen tongue), mouth ulcers, appetite changes, and in cases caused by pernicious anemia or atrophic gastritis, digestive symptoms tied to low stomach acid and impaired intrinsic factor production.
Hematological:
macrocytic anemia (though as covered above, this is often absent even in confirmed deficiency), pale or slightly yellow-tinted skin, and easy bruising in more severe cases.
Other:
sleep disruption, poor temperature regulation, and in longstanding untreated cases increased dental issues and skin or nerve sensitivity.
A lot of people assume they're in the clear because they don't have anemia or their serum number looks fine. As covered above, that's exactly the gap this whole post is about; anemia and serum level are often the last things to show up, not the first, and a documented chunk of deficient patients never show them at all.
On injection frequency: there's an actual cross-sectional study of ME/CFS patients who'd been on B12 injections at least weekly for six months or longer. The best-responding group used significantly more frequent injections and higher doses, for longer, than the mild-response group, and folic acid dosing mattered too, in relation to individual MTHFR genotype. So more frequent than standard monthly maintenance dosing has real data behind it for this patient population.
My own personal protocol right now is daily B12 injections, sometimes multiple times a day, and I've noticed a real turnaround in my chronic fatigue since starting. I want to be clear this is just what I've landed on for myself through trial and error, not something backed by a specific study, so take it as one data point, not a recommendation. If you're curious what others have tried, r/B12_Deficiency has a lot of people comparing protocols and it's worth a look so you can draw your own conclusions.
I'll also say, from my own history, I had decades of symptoms that never got connected to this: severe migraines, a saw-blade sensation in my head, chronic neck pain, dental issues, memory problems, morning anxiety, that went undiagnosed for years. Once I started correcting a functional B12 issue, some of that started making sense for the first time. Anecdotal, not proof, but it's the pattern that got me digging into this.
If you want to rule this out properly, here's what to ask for, since a basic serum B12 draw isn't enough: methylmalonic acid (the most reliable functional marker, since it builds up when B12 isn't working at the cellular level even if serum B12 looks normal), homocysteine (elevated when either B12 or folate metabolism isn't functioning), intrinsic factor antibodies (to check for pernicious anemia as an autoimmune cause), folate RBC instead of just serum folate, and an MTHFR genetic test if you can get it, since it changes how you'd want to supplement (standard folic acid can actually be a problem for people with MTHFR mutations; methylfolate is usually the better form).
To be clear, I'm not saying this explains ME/CFS or that it's the same illness; ME/CFS is a distinct neurological disease and post-exertional malaise isn't something B12 deficiency causes on its own. But the symptom overlap, the flawed way B12 status gets measured, and the documented cases of misdiagnosis all seem worth taking seriously, especially if you've never had anything beyond a basic serum B12 checked. If anyone's already had MMA and homocysteine checked and it came back clean, curious to hear that too, since it helps rule it out for good instead of leaving it a question mark.
Sources:
- Goodman, "Are U.S. Lower Normal B12 Limits Too Low?" *J Am Geriatr Soc*, 1996: https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.1996.tb01389.x
- Mitsuyama & Kogoh, "Serum and Cerebrospinal Fluid Vitamin B12 Levels in Demented Patients with CH3-B12 Treatment," *Psychiatry and Clinical Neurosciences*, 1988;42(1):65-71: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1440-1819.1988.tb01957.x
- Lindenbaum et al., "Neuropsychiatric Disorders Caused by Cobalamin Deficiency in the Absence of Anemia or Macrocytosis," *N Engl J Med*, 1988;318:1720-1728: https://pubmed.ncbi.nlm.nih.gov/3374544/
- Zheng et al., "Vitamin B12 Deficiency Presenting as Psychotic Symptoms in a Psychiatry Department," *Cureus*, 2023: https://pmc.ncbi.nlm.nih.gov/articles/PMC10787274/
- "Vitamin B12 Deficiency Masquerading as Clozapine-Resistant Psychotic Symptoms in Schizophrenia," *J Neuropsychiatry Clin Neurosci*: https://psychiatryonline.org/doi/10.1176/appi.neuropsych.12040089
- Regland et al., "Response to Vitamin B12 and Folic Acid in Myalgic Encephalomyelitis and Fibromyalgia": https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4406448/
Hi all, I've been trying to reduce sensory stimulation to rest more effectively, but I can't seem to stop reaching for my phone. Do you have any tips for progressively reducing phone use? I don't even do anything of value on my phone, it's usually just mindless scrolling on social media, but I still can't seem to stop. I've already tried alarms to tell me when I've exceeded a time limit for certain apps, but I just ignore those because I can't hold myself accountable unless I'm under some kind of threat lol
Had a panic attack few weeks ago as I thought my family would put me in a psych ward. I ran into the forest for some hours. Days later I removed multiple ticks from me.
Andddd, now I have Lyme disease. Due to my immune system already being impaired by ME, my symptoms have progressed rapidly. It started with flu-like symptoms and full body neuropathy. Tingling/weakness/pain in all limbs (mostly hands and feet). At first I gaslit myself into believing it was a PEM crash, but I never had neuropathy due to PEM.
Due to MCAS I can barely tolerate any meds or supplements. Now switched antibiotics again, but I doubt it’ll work. The only real treatment for Lyme is antibiotics or herbs.
I feel so incredibly stupid and I just ruined my life even further. I know there’s controversy behind “chronic Lyme”, but I have new symptoms that I never had before and it doesn’t feel like they’ll go away. All I read is you need month or year long treatments with antibiotics or herbs to treat it, which I don’t have energy, money or being able to tolerate because of MCAS.
I never leave my house and the one time I do, this happens….. what a nightmare. I’m seriously so dumb.
"Susanna Clarke reflects on the power of storytelling to shape our experience of sickness."
TW: mention of "pain reprocessing, somatic tracking, polyvagal theory"
I’ve been stuck in bed all day since yesterday and I’m not functional before 3/4pm. I haven’t drank electrolytes yet and got up to pee and almost passed out, my vision went gray for longer than usual and my whole body tingled.
It’s so annoying because horizontal time helps ME but POTS symptoms become worse. I’ve had a different chest pain than usual since yesterday too.
I’m just so done with all of this
Hi everyone!
I have a small glimmer of hope that I may actually be getting better after very severe ME/CFS, and I’m trying not to get ahead of myself, but it’s hard not to feel emotional about it.
I know one of the hardest parts will be figuring out how to re-enter society and reconnect with people face to face after so long. I feel hopeful about that, but I also feel deeply hurt and bitter about how some so called friends ghosted me along the way. It left me feeling ostracized from society, and I don’t really know how to process that.
For those of you who have improved or recovered: how did you handle the emotional side of reintegration? How did you deal with grief, resentment, loneliness, or feeling left behind?
I’m housebound but my GP surgery keeps inviting me to the surgery for a smear test.
I’ve seen you can buy private HPV tests online where you can test yourself at home.
Does anyone know if that is a good alternative?
How do others navigate smear tests when housebound?
I feel like I wanna die asap
Does anyone else feel this way?
I’m very severe
First off, I want to preface by saying that I’m in no way trying to place myself on a higher pedestal or be insulting!
TL;DR: I was diagnosed with moderate ME/CFS on June 8, 2026, but my parents and I (18, ftm, and have not medically transitioned) are questioning the accuracy of this diagnosis, because my POTS symptoms have always seemed mild compared to others & we think I'm "too healthy" to meet the criteria for ME/CFS.
Medical Background:
In late March/early April 2025, I fell ill and was bedridden for a week. I visited my general practitioner, who suggested it was likely a depressive episode. (I was diagnosed with depression and panic attacks in 2021, but had been symptom-free since early 2024.) After that, my health declined: I tired quickly, had a high heart rate, felt dizzy, and frequently experienced presyncope, blood pooling, and more.
I researched POTS, tracked my heart rate and symptoms for months, and was officially diagnosed by my cardiologist in August 2025 after ruling out heart-related, neurological, and psychological issues. We were fairly certain it was POTS because, just in October 2024, I underwent a full health screening with specialists (my parents arrange these every 5–7 years for safety), and I passed everything—including the fitness stress test—with flying colors.
I was lucky to receive a quick diagnosis (six months after symptom onset) and have an amazing medical team supporting me. Since then, I’ve:
Compared to others with POTS, I seem to be doing well, likely because I caught it early, and have been managing/pacing almost from the start.
That’s why I was surprised when the specialist center for Long COVID ( I got an appointment for their POTS program) diagnosed me with moderate ME/CFS after a two-day intake. They also suggested testing for hEDS, but specialists are scarce in Germany, so that’ll take months.
I’ve taken the diagnosis seriously and further reduced my activities. However, this past week, I finally processed the diagnosis of something as scary as ME/CFS and started researching it. Through this, I’ve noticed I don’t experience the restrictions or post-exertional malaise (PEM) described for ME/CFS (imo).
Here’s my average daily life before becoming Ill:
Weekly activities:
I did all of this without extreme exhaustion. Just average tiredness, joint pain (which I’ve had lifelong and worsened during puberty), and joint instability (hence the possible hEDS).
My new routine since August: (this routine has improved my POTS symptoms)
Weekly activities:
My heart rate can spike high. For example, during PE at school, it would regularly hit 190–200 bpm. I’d feel tired that day but could still attend school on Friday without feeling drastically worse. By Saturday, I’d return to my baseline. I’ve been written off PE since the ME/CFS diagnosis and have noticed an improvement in my general energy.
Why I’m doubting the diagnosis:
Since developing POTS, I’ve:
After about an hour of walking around (e.g., clothes shopping), my hip and leg joints hurt. If I don’t sit down for a few hours, the pain will last for a few days.
I have days where I push too hard, and my symptoms flare up: more presyncope, weakness, a slightly runny nose, the urge to lie down, and a quicker/higher heart rate spike. Still, when I compare this to descriptions of PEM, I don’t think I have ME/CFS. I regularly exceed my limits (I’m young and sometimes ignore recommendations), and haven’t felt the typical PEM symptoms of excruciating pain, sore throat, fever, etc.
Now, I’m confused as to why they diagnosed me with moderate ME/CFS. Is there something I’m not understanding about the condition? My parents and I think it’s really “just” POTS + (possibly) hEDS.
Being diagnosed with ME/CFS has really messed with my mind. I’ve started worrying about my future and doubting whether I’ll ever come out as trans, because I don’t want to add another stressor and vulnerability to my life.
I’m torn. On the one hand, if I’ve been misdiagnosed with ME/CFS, I want nothing more than to focus on improving my POTS again and working toward the life I had before. But at the same time, I’m afraid. I think the (mis)diagnosis will always be in the back of my mind, like a reminder of what could happen if I don’t pace myself. I’m afraid I’ll always fear that I could end up with severe ME/CFS if I return to a more active lifestyle, even if doctors proved tomorrow that I don’t have it.
Thank you for reading, I’d appreciate any insight/advice!
I've accepted this shitty disease since my life changing crash in February '26. I'm housebound. Mostly prone bound (chasing an orthostatic intolerance diagnosis + dysautonomia).
But damn it. I'm the type of person who likes to dance along to music at home. In the shower. The living room. Sometimes, like this morning, I think f-k it! I've need a shower for over a week. Waiting for a "good day". This morning was it! Showered. Had a dance to a few songs. Then it hit. The dizziness. The pain. The palpitations. Burnt through all 14 of pace my points and now I'm crashed in bed.
This is shit.
(Not looking for advice. I use visible. I know i shouldn't over exert. But sometimes I need the dopamine hit. Something to make me feel good for once!!)
I’m posting this in light of the research suggesting that brain waste products build up in people with CFS. I have migraines, so figured I could use extra brain waste flushing anyway.
So when I read about how yawning helps clear waste a few weeks ago, I got myself some cute yawning reminders and put them around my house. My favorite is a small oil painting of a cat yawning that I hung next to my toilet. I hung it by my toilet so I see it often, but not all the time. It’s the cutest reminder to yawn, and since yawning is contagious, it helps me to yawn. Someone on Etsy sells them for super cheap.
I also bought a shirt with a yawning cat to wear on my bad days and some stickers.
Bonus: yawning stimulates the vagus nerve.
Does anyone feel better after reading this post and yawning? ❤️
Tremors, buzzing, noise and light sensitive, anxiety, insomnia. It feels like GABAergic withdrawal which I have been through many times, but no GABAergics as of late. It’s very difficult to relax. At the beginning of this crash I couldn’t sleep, now I am sleeping a lot. Is this a good sign? Sorry for all my post, I am truly new to this disease and don’t understand it.
Wondering if anybody else gets this. It's also really hard to breathe. I feel a lot of pressure on my chest
I'm trialing a few meds for MCAS at the moment. One of the changes I noticed was a drastic change to my fatigue levels, it was almost instant
It's so much milder. I can still feel it a little bit, but it's just so much more manageable. I was actually really confused at first because I couldn't identify the feeling in my body (I'm autistic, I struggle with that), but I realised that it was a much milder version of the fatigue that I'm used to.
I'm in a bit of a crash after an appointment, and yet my fatigue levels now are pretty much what unmedicated me would consider a pretty decent day in terms of fatigue.
I'm really happy about this. Of course I'm still being very careful and pacing, that won't change, I'm just very happy about this win
TL;DR: VRChat can be a low effort way to feel much more socially present with others compared to other online options, eg with people virtually cuddling. Also it makes me feel much less disabled while being able to attend virtual events and explore virtual worlds with other people. Especially if you are housebound but can still tolerate screens and stimulation relatively well. It is not suitable for everyone, can be overwhelming, and it can be hard to find the right people or groups. Desktop or mobile is the easiest entry point, Virtual Reality (VR) is more immersive but harder to tolerate and more expensive.
I want to mention VRChat as a possible option for some people with ME/CFS who struggle with isolation. It has really helped me over the last few years, especially after making friends with people who I can just be around without having to do or say much. I only use it while lying down with a VR headset connected to my gaming PC. Exploring the endless amount of worlds created by other users can also be very exciting, when otherwise housebound, especially in world hopping events with other people. It makes me feel a lot less disabled, compared to trying to do things outside of my house. There are also tons of different kind of virtual group events going on in VRChat.
Unlike social media, voice / video calls, or text chat, VRChat can feel much more like actually spending time with other people. You can talk, watch movies together, explore virtual spaces, listen to music, cuddle, or simply sit quietly in the same environment. The feeling of sharing a space with someone can be really strong, especially when using a VR headset. This way your actual hand and head movements translates to the virtual world and you see things in real life size and with your head movements realistically changing your view. For me it is a totally different experience than any other virtual interaction. Although many people get some motion sickness in VR at first and some have problems with it permanently.
For many people with ME/CFS it will be too stimulating, particularly in VR. It can also be overwhelming at first to understand the options and how to get a good experience. However, there are tools that help a lot, such as adjusting who you hear based on distance, changing individual volume levels, or hiding specific avatars.
Good VR hardware can also be expensive. The most accessible options are likely the Quest 3 or Quest 3S if you want standalone VR without a PC. The best experience is having a strong gaming PC with a VR headset connected to it. The desktop version without VR is much easier to access and may be the best way to try VRChat first. It can also be used on Android and iPhone or iPad, though you need fairly good hardware and the experience is still more limited than on a decent desktop PC.
Another challenge is finding the right people and communities. Large public spaces are often chaotic and unpleasant, while the best experiences for us usually happen in smaller, quieter groups. There are also communities focused on resting and low activity socializing, for example the group "Cuddle?" which always has instances of the world "Cuddle & Sleep" where people are simply resting or talking quietly. It might also be interesting to form a small ME/CFS focused group for low energy socializing. There is also a calendar where you can see groups events that are scheduled at certain times.
So I would not recommend VRChat to everyone with ME/CFS. But if you enjoy online socializing, games, virtual worlds, or want a stronger feeling of presence and connection than other online platforms provide, it might be worth looking into.
I can also recommend this YouTube video about VRChat to get a better idea what it is about and if you might enjoy it: https://www.youtube.com/watch?v=4PHT-zBxKQQ
What are your thoughts on or experiences with VRChat?
Fireworks started over my house. I used to love fireworks. Last year, I was sicker, and I cried in my bed until 3am, jumping at each one, praying and praying for them to stop. But this year, I’m just a little better. And I couldn’t help it. The couch I spend my days reclined on is right next to the front door. Barely thinking, I stepped outside. Sank to the ground on the sidewalk and watched, enthralled. Earplugs in, hands on my hands ears. Something like 15 people who’d been setting them off were pouring down the street all around me, yelling, trying to escape before the cops showed up. And that enthralled me too. Their life. Their exclamations of awe at the show, which I shared too, but could not voice. Each explosion hurt my head, sent an alarming jolt through my body, but I couldn’t pull myself away.
Then it ended. My heart rate was 130 sitting there. I was shaking, sweating like crazy. Now I’m inside and feel the buzz just sitting in me. My body doesn’t know how to flush out all those sparkles. That feeling used to be nice but now it feels like an omen of death. Like someone’s punched me in the skull. What will it mean for me tomorrow? This body is no longer made for fire, or thrill. But I keep setting it ablaze anyways. And I try not to. And I try to be good. But sometimes, and more often lately, the base of my nature gets the best of me. And I suffer. And oh how I have tried to change who I am. I feel like a doll made of cross reactive polymers. The one they made my head out of melts the one they used for my body. I am curious if thrill seekers with ME ever find a way to exist that isn’t a) constantly harming yourself even in the smallest pursuits of thrill, or b) chronic suicidality as you abstain.
(I do not condone illegal firework usage and I do not celebrate anything about this holiday, but if they are there, my monkey brain would like to see them)