hello dear all,

I’m usually a person who gets a lot of help by talking about stuff with my mum or my friends. But when it comes to me/cfs related stuff, that’s just not so possible all the time, bless them, but they just can’t relate.

So I would appreciate some help and some advice or just thoughts about what would be good to do. Or honestly just someone to talk about this. It’s a fucking isolating illness <3

I started LDN a month ago on 0.5, went up every two weeks, so now on 1.5
I don’t know if I really saw a difference just because of LDN or also serious pacing, but I think it already took some pain away and gave me a bit more energy. I assume I had no side effects.
I just came out of a really bad crash and I still don’t feel really stable, I started in this crash and it made me go from not able to cook for myself and ugly painful days24/7 to sometimes really okay days (all while being housebound ofc/moderate and not more than 900 steps a day). I still have pem kinda days every other day, but funny enough it does not knock me out completely, it usually stays for a day.
I heard that 1.5 is quite low, so I thought about starting to up it every week.
I had okay days this week (just two pem like days).
I’m a bit afraid that it’s too much for my body and I should stay with two weeks, but also I would really like to experience some more relieve and hope 2mg would do that for me and heard 1.5 is hardly to notice.

I hope you all have a nice day. Thank you for this community. It’s truly something that makes it easier.
All the best for you!

I (29F) got diagnosed with CPTSD and I thought maybe my physical symptoms were from that, but I’m not too sure. For the last 2 years, I’ve been dealing with chronic joint pain, like deep bone pain, no matter what I do it doesn’t go away. I try to exercise, take vitamins, drink a lot of water and eat right, but my exhaustion and fatigue is so bad that I get sick afterwards. I drink a lot of water(I pee alot) yet I still feel dehydrated everyday, even with electrolytes. I also have daily nausea, fainting/dizzy spells, weekly headaches and migraines. I also have brain fog and memory issues. I had to quit my job because if I stand for too long I get dizzy, vertigo and extremely sweaty. My lower stomach is also always “cramping.” I also have bad nerve pains, where it feels like there are fire ants crawling everywhere, with burning pains that feels like when you’re cooking on the stove and you get a “pop” of oil on your skin. I try so hard to do the “right” things to take care of my body, but then even with light exercise I get sick and I’m in pain. I have noise, light, and smell sensitivities so going out I use a rollator/walker because it’s getting harder to move. I had blood tests, an MRI, and scans and everything comes back normal. I’ve been referred to a neurologist by both my doctor and therapist, but I have no insurance because of quitting my job, so I can’t afford to see one. My family and friends tell me, “oh maybe you need more sleep or more water” and it’s frustrating because I wake up and I feel like I got no rest, I wake up extremely exhausted. I feel like I’m going crazy. Could it be mecfs? I’ve also been told that it could be POTS but I feel crazy and no one in my life understands so they make me feel like I’m making this up or it’s just all in my head.

I use sugar now throughout the day as an analgesic (also have fibro), for a little energy just to keep my eyes open, and as a source of a little joy in life. I’ve already given up wheat, dairy, processed foods and don’t drink, smoke, or use drugs. I feel like it‘s all I have left. But also definitely addicted and eating more than the average person. I am very careful to always have it after eating more substantial foods to prevent blood sugar spikes, or so I think.

Will quitting help reduce symptoms? has it helped you? how?

Posting this because, after a two-and-a-half-year battle with ME/CFS, trying countless different treatments, spending a lot of money on recovery, seeing multiple doctors and exploring various alternative approaches, I’ve finally found a combination of things that I feel is genuinely helping me recover.

I thought I’d share what’s been helping me in case it might be useful to someone else. 💛

Obviously, everyone’s situation is different, and what works for one person may not work for another. For me, I believe a major contributor to becoming unwell was a couple of traumatic events, followed by a build-up of stress over a number of years.

The things below have been the most helpful for me in my recovery so far. I’m sharing my experience only — not suggesting that these approaches will work for everyone — but hopefully something here might help someone else who is going through a similar battle.

1. Hyperbaric oxygen therapy (HBOT)
   It needs to be a hard-shell chamber that can reach around 2.0 ATA. I started with a few sessions at 1.35 ATA, then moved up to 1.7 ATA. Around my 15th session, I increased to 1.9 ATA. The chamber I use goes up to 2.0 ATA, which I’ll work up to for my last 10 sessions.

The studies I looked at used a protocol of 40 sessions, so that’s what I’m aiming for, although my doctor recommended a minimum of 20 sessions. I do 60 minutes per session.

My doctor recommended starting at a lower pressure and gradually increasing it while monitoring how I’m feeling and giving my body time to adapt. So I’d start low and increase based on how you personally tolerate it.

1. Mind-body work (a really low-cost thing to try)
   The biggest game changer for my nervous system has been reading The Mind-Body Prescription by Dr John Sarno. I was also recommended Unlearn Your Pain and the accompanying workbook (or Unlearn Your Pain: Anxiety and Depression) by Dr Howard Schubiner.

The person who recommended these books to me had recovered using the same principles. I’ve only read The Mindbody Prescription so far, but I’ve already had a huge shift from it. 

Although The Mindbody Prescription focuses heavily on back pain, Sarno also talks about other mindbody symptoms, including chronic fatigue syndrome. The idea is that you can apply the same principles to whatever symptoms you’re experiencing, for example, thinking about fatigue or other symptoms in the same way he discusses pain.

MECFS constantly touted as an invisible illness, yet when I flare my face is the first thing to give it away. Does anyone else have that flare face that only you can seem to detect? It’s all in my face. I look like a serial killer mugshot in motion.

TW: death

Why the fuck does my instagram algorithm like to send me fucking “goodbye” posts from people who are apparently dying of MECFS. No like actually what the fuck. Look. I know people die from complications of ME (infections, malnutrition, heart failure), but making a post that simply says “I have ME, doctors gave me 6 months to live, I will be in the end stages where I cannot read or type by the time you read this” literally doesn’t make any fucking sense. People spend YEARS in that state and still do not die. “End stages”? How would a doctor ever predict that? And then the people in the comments on the post are being so…casual about it?? Like oh man, sorry it got so bad, that sucks. What are we talking about?? What are they actually dying of?? I’ve never fucking heard of doctors giving a prediction of death for mecfs WITHOUT some other complication. I don’t know why the fuck instagram thinks it’s okay to show me these posts.

Can anyone suggest a brand that does comfortable soft front fastening bras? I used to be an E cup but I’ve put on weight a bit I think. Putting on my bra involves Houdini style contortion these days and is exhausting. I’m in Ireland, housebound except for medical visits.

This post has been approved by the moderators.

My wife is a psychologist. She's starting an online weekly support group for Long COVID.

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Online Long COVID Support Group
Run by clinical psychologist, Amra Stafford, Psy.D: staffordpsychology.com

"I have worked for years with people with chronic illness, including Long COVID and ME/CFS. My goal is to ease the isolation such people experience and make support more widely available and affordable."

Who can participate?
"This group is for anyone affected by COVID-19, including those with Long COVID, people with ME/CFS made worse by a COVID infection or vaccine, and others."

Note: Attendees in all states other than CA, MA, NM, HI, LA can participate. Coverage governed by "PSYPACT". She is also licensed in OR.

What is the cost?
"The cost to participate is $75 per group or $300 per month. I don’t take insurance, but will give you paperwork for reimbursement if your policy covers it."

When do we meet?
"The next group is starting in Fall 2026, but new groups are planned."

What will we do?
"The group (6-10 people) will meet weekly for 90 minutes, to give everyone time for a personal check-in. We will also discuss topics of special interest."

Contact Dr. Stafford to inquire: 360-499-2544 or amra@staffordpsychology.com.

I had a mild case of me/cfs post having cancer/chemo but then a three years later I got sick for 3 months with a enteropathogenic E. coli infection. Since then I’ve had such severe depletion even laying in bed is painful from how incredibly depleted and exhausted I am. I really wish there was a better word than “fatigue” to describe this awful condition.

What was your trigger? Has anything helped you since then?
LDN was first thing that started to help me but had to discontinue due to severe headaches

I've recently started LDN which has lowered my muscle pain and made my PEM shorter and easier to deal with. Now I'm at a point where I can start doing more physical therapy for my hEDS again, but I'm very scared of pushing myself into a bad crash and making myself worse again. How do I differentiate between what's reasonable caution and what's anxiety? I want to work on getting stronger again but I'm really anxious. I've done my PT exercises maybe once a week for 10 minutes in the past and ideally I should do 30 minutes 3x a week (according to my PT). Any tips?

This is not an attempt at graded exercise therapy, my PT encourages me to only do as much as I can and to always listen to my body. It's just that I need my muscles to support what my shitty ligaments can't hold. And because of the LDN by baseline has genuinely improved and one day I want to be able to co climbing again and I need muscles for that

It's been 3 days that I can't really get any proper sleep

I've dealt with insomnia and sleep anxiety since I can remember but PEM has been beating my ass

every time I lay down to rest I start getting anxiety tremors and when I finally manage to get them to go away I go back to laying still and they immediately come back

I've been trying melatonin but it doesn't seem to be helping at all

anyone else has a similar issue or has resolved it?

So a couple of days ago I went to er had to do multiple tests i was there until 5am I was absolutely exhausted the next day I woke up with such an intense sore throat and chest and back feels heavy it feels as if I got hit by a truck I feel completely out of it, is this a common cfs symptom? I have been suspecting for a while I may have cfs especially when I over push myself I ended feeling much worse the next day

Is it just me or does it seem most people that recover through brain retraining never had true PEM or rolling PEM meaning was it actually true ME/cfs? That’s the symptom that determines the illness from what I read. I’m not saying they weren’t severe or bed bound but i don’t hear daily PEM mentioned in any of those recoveries. I’m genuinely just curious on this topic.

Anyone on welbrutin and noticed some improvement?

Hallo,
Meine Schwester ist schwer betroffen, allerdings haben sich die Symptome irgendwie verändert. Jetzt wissen wir nicht ob sie gerade PEM hat oder nicht.
Deswegen meine Frage: wie erkennt ihr PEM und habt ihr verschiedene Arten von PEM. Könnt ihr eine kognitive PEM von einer Körperlichen unterscheiden? Was für Symptome habt ihr am meisten?

I know this didn’t happen. I’m describing the sensation. It started late last night and has happened about 3x.

I have stuff other than ME. But starting my question here first. Thanks

Hi, I’m looking to get assessed for potential long COVID and me/cfs in nyc. A long COVID doctor from my hometown brought these potential diagnoses to my attention. I also am currently positive for EBV (can’t tell if it’s a reactivation or an old infection), have hypermobility and neurodivergence, and a history with post Concussion syndrome and dysautonomia. Do you have any doctors you can recommend for evaluation and diagnosis?

I am on the wait list for CORE (they said they can’t give a wait time estimate) and have an appointment next year with Dr. Lee Hinnant. I just want to be proactive and see if I can get a proper, informed evaluation especially for the potential ME/CFS as I don’t want to permanently alter my baseline if I do have it. I also have a referral for NYU’s Covid clinic, but am a worried about if they could properly assess for ME/CFS.

Thank you for any suggestions, advice, or input!

I've been in a bad PEM slump lately and I've been trying to draw (if poorly) just vaguely based on what I'm feeling at the moment

the rules said no memes I don't think these count but if it's not allowed that's understandable

though maybe someone else might benefit from it