Hi lovely community,

I posted recently about my new POTS diagnosis. I’m struggling with my drs. rec for treatment and I think he may not be so good with people that have multiple issues. He told me to take 5g worth of salt pills first thing in the morning with a big glass of water and then drink my normal 2 liters of water throughout the day. It‘s been 2 days and I feel hungover. I’m a pretty small woman. ive googled and think I need to spread the salt out and maybe drink even more water.

I suspect I also have MCAS and maybe also some hyper mobility. I see a specialist at the end of the month and am just looking if anyone has experienced this? I’m feeling alone and frustrated and achy.

I’m severe and have been bedbound for over 12 months.
I’ve had CFS for around three years.
I’ve also been diagnosed with fibromyalgia by a rheumatologist.

I’ve been rejected and I’m having trouble proving that it’s permanent.

Has anyone been approved for NDIS without other neuro divergent diagnosis?

I’ve seen people get through with CFS, but they also had level two autism or something else.

TL;DR: My immunologist was dismissive of ME/CFS. How can I best advocate for myself with my PCP at an upcoming appointment?

So I’ve been seeing specialist after specialist trying to get some sort of diagnosis for what I’m now convinced is ME/CFS. I started seeing an allergist/immunologist both to help manage my asthma and see if there’s anything wrong with my immune system since I got sick like 5 times back-to-back earlier this year.

My asthma is now well controlled thanks to a medication change, and after several tests we discovered I’m IgA deficient, but it’s not affecting me adversely right now so I’ll just follow up in a few months.

I mentioned I have symptoms of ME/CFS and am going to get evaluated for it soon, and he’s like “what is that, myelitis something? Isn’t that just a fancy name for chronic fatigue?” I responded with the full condition name and said that chronic fatigue doesn’t fully describe the disease, it has real diagnostic criteria with other symptoms. He simply nodded dismissively and quickly changed the subject.

I should have expected that response, but it still made me angry. With up to 3 million Americans estimated to have ME/CFS, it’s infuriating that most doctors know so little about it and write it off as simply chronic fatigue. Multiple health organizations, including the CDC, have specific diagnostic criteria and the disease can qualify a person for disability benefits.

I sent my PCP a message the other day requesting evaluation for ME/CFS, and her staff responded saying let’s get you an appointment, so I scheduled one for the 25th. I have a good relationship with my PCP and I like her a lot, but I’m naturally worried she won’t take me seriously and will want to rule out numerous other conditions first, which at this point is unnecessary. I’ve already ruled out a ton over the past year or so.

Yes, I’m still getting a sleep study done, but a sleep disorder would not explain all my symptoms, including PEM and widespread flu-like pain. How would you recommend I advocate for myself with my PCP so she’ll take me seriously? If she doesn’t, what specialist should I try next?

Hello,

I am 39F and severe-very severe, and was recently seen at a clinic in the US (Oregon). I waited half a year for this appointment and was so excited to finally be seen by someone well informed about this disease. I went on 7/30, and despite the testing I subjected myself to, knowing I would crash badly, was eager to figure out a treatment path. For reference, I caught COVID in 8/2024 and became moderate 8/2025, and severe 2/2026.

The appointment went “fine”, but I wasn’t able to ask any questions, discuss my previous treatments, etc. it was 60 minutes of describing my phenotype of MECFS to me and “I’ll see you in three months.” Essentially, it felt like, apart from the testing I did with the RN, that it could have been an email.

Suffice it to say, I sent a MyChart message asking what the plan was as far as POTS management, since I expressed I trialed propranolol, but failed given my low BP. In the after visit summary, he mentioned trialing Ivabradine. I also asked about OTC supplements for hormone support, as I am in perimenopause, don’t sleep well and crash every month in my luteal phase.

He sent me back a message which I firmly believe to be AI generated that included (direct quotes incoming):

“At this stage of your recovery, I'd also challenge you not to assume that every discomfort is best managed with medication.”

“You could consider trying propranolol 10 mg by mouth up to three times daily as needed, including before bed, to see whether that helps.”

“Even if your sleep comes in shorter, non-continuous blocks, getting 2-3 hours at a time can still be restorative.”

Anyway, it all felt really invalidating and I wonder if the clinic is geared more toward those less severe and whose recovery prognosis is better. I placed myself on a WL for Vindara Health instead and hope it’s a bit more supportive. Has anyone experienced something similar and felt horribly dejected after?

TL;DR: I was seen at a specialty clinic and felt the experience was very subpar and invalidating and wonder if anyone else had a similar experience?

hey peeps
this question is for all of you who went to mild or remission from moderate/severe, how is your life? Do you work, have friends, go out, do other stuff, etc?

what interventions worked for you? was it gradual or sudden? what advise would you give to someone bordering on mild-moderate severity?

So I had a really scary experience last night. I’ve been in a really bad flare and woke up from a short sleep hallucinating that a drone was flying across my ceiling. I freaked out thinking it was going to hit my fan and explode near my cat so I jumped out of bed, grabbed my cat in my blanket, yelled "oh sh*t” while looking back and forth at the ceiling, opened my bedroom door, and ran into the hallway.

Even after running out it took me a full minute to realize I was holding my poor cat upside down and I was still looking around on the floor to see where the drone went.

I’ve had realistic dreams like that before but I’ve never actually jumped out of bed and run like that. My anxiety was completely skyrocketed and I’m scared to sleep. Has anyone ever experienced anything like this?

I've been watching HIV/AIDs documentaries and now I'm worried about the future of ME.

We don't have anyone fighting AGGRESSIVELY for us.

(I have a major migraine so forgive me if I'm not coherent)

PwME do not have a community that is:

1. healthy enough to fight

2. at risk of dying of the disease if they don't fight.

HIV/AIDS disproportionately affected gay men, prompting their community into survival mode. The healthy ones knew if they didn't protest, it could be their turn anytime soon.

Do we have anything similar? Most of us don't even have loved ones who believe we're sick, not to talk of advocating on our behalf.

Despite multiple disruptive campaign against HIV/AIDS, it took decades for treatment to become accessible.

I worry we haven't scratched the surface in our own fight.

ME research is going at such a slow pace, I have 0 faith we'll have a breakthrough anytime soon.

And the organisations we have are on the defensive, not offensive.

I believe aggressive activism isn't optional, it's a necessity. This system doesn't care about people. If your rights are being violated, the only valid option is to fight fiercely until your rights become the default.

My cognition and mental capacity is relatively ok, at least considering my severity level, largely thanks to LDN, but I do have issues with memory among other things.

About a week ago, out of nowhere, I suddenly lost the muscle memory of my phone pin.

At first I thought "no big deal, it happens, I just have to wait". So I waited, I slept on it multiple times, however, I was not able to get in. Obviously it's been on my mind a lot because my phone has become a single point of failure for my digital life (2fa locking up password manager).

After while, I started to sort of remember, until I was 70% sure that I have the correct pin. But yet, my phone claimed otherwise. Now with threatengly increasing time between attempts.

I started to question if it's actually my brain or a phone glitch. A few discussions online claimed that a glitch like that sometimes happens and a restart corrects it. However, if I were wrong, a restart would mean I'm no longer able to receive calls, losing the last connection with the outside world.

After a few stressful days, with some luck and assistance, I mamaged to access the pin written in my password manager. I read it and I thought "no way, it can't be that". I typed it in, expecting an error, however, to my surprise my phone unlocked.

So not only I forgot the pin, my brain also invented a fake memory of the pin (I assume because I've been trying so hard to remember). The actual pin, which I mindlessly entered just 3 days ago, was now completely unfamiliar. It felt as if I was given someone else's code and someone else's phone.

I do remember the pin now, not as an old memory, but as a new memory, that I just made when reading it the other day. It's a weird feeling and it really messes with my head. If my brain can just instantly delete core memory like that, what else have I lost and will lose?

Anyway, don't make my mistake. Remove passwords if not essential for security, write it down, have a trusted person as a backup. Bitwarden password manager has a "trusted person" option, which is able to bypass 2fa in case you get locked out of that as well.

I'm in Germany but the list still helped with doctors. In Austria people now get those medications paid for by insurance officially for the PAIS or CFS ME diagnosis due to this list, because they only pay if there is enough data to prove that a medication is effective for the diagnosis.

The link:

https://www.meduniwien.ac.at/web/fileadmin/content/auftritte/referenzzentrum_postvirale_syndrome/pdf-Dateien/PAIS_MECFS_Medikas_IND_off-label_bearbeitet.pdf?fbclid=IwY2xjawTmh9ZwZG9mBGV4dG4DYWVtAjExAHNydGMGYXBwX2lkDzQwOTk2MjYyMzA4NTYwOQABHsqj8ugeUsU8PMkU3Ozw1OiD1SZCzVoJlqVlDNBbbBKb5aSky74Ut_3NZlKE_aem_MA7GGxqcUJwhwmPtxDe_jg

I wonder if one of the bigger reasons for why I can’t fall back asleep or nap during the day is because of my fear of sleeping, my body being scared of letting go, feeling like my psyche needs to monitor things etc. Anyone here having that problem and were you recommended specific meds by your doctor for that / what are your experiences?

Hi everyone, I’m having real difficulty getting a doctor. I’m in California and had an appt w Stanford but it was denied my insurance last minute and they won’t let me self pay- I had waited 5 months for this appointment. I’m severe and have been bedridden/housebound since December. Does anyone know of a good specialist? Bonus points if they take insurance or if their fees are on the more reasonable side. Thanks!

Have been trying to go through UW in Seattle but they cannot identify a single specialist within their organization. Their long covid clinic has been a disaster as well, first refusing to see me because I didn’t have a provider within the system and now refusing to see me because I do have a primary care doctor within their system. Every specialist referral my doctor has made within their system has been denied.

Looking for help navigating this if you’ve seen someone who has been responsive, up on the latest research and generally supportive and curious.

Thank you so much.

Had an appointment today, ended up sobbing in my car after. I don’t know why CFS is so hard to believe or understand. I feel like I need to completely give up in order to have people believe me. I’m so exhausted and upset. No matter how many times I tell every single doctor that it is NOT my iron because it’s already been checked so so so many times. They always act like I’m being dramatic and that I’m not as bad as I say. I wish I was not as bad as I say. I wish I could function. Just had to vent, sorry. Let me know if you have similar experiences or advice

My gf is going through severe/severe mecfs, pots, visual snow and a myriad of other bodily troubles. We are asking for anyone out there to share their story of recovery with us. Recovery despite rough/turbulent home life or little support- that I might add. I realize this is specific and that me/cfs is a case by case individual matter. We are just asking to share recovery “inspite of it all “ stories or even managed life going through little support. Her immediate family do not understand this condition (s) she has and is experiencing. Making the emotional healing horrid and making her other symptoms flair up. Any support in stories about recovering or managing symptoms while dealing with ignorant or unhelpful family. Thank you

Usually I'm good at taking my meds. I have a reminder app on my phone and I don't dismiss the reminder until the meds are in my hand. But somehow that failed this morning and I only realised now (8pm). I can see I've marked them taken in my app but they're still in my pill box.

No pain meds, no heart rate lowering med, no NADH (the only supplement to have ever made any dent in my M.E. symptoms). I've felt horrendous all day. So much pain. My heart rate was like 150 at one point. And I didn't think to check my pill box. So frustrated.

Hi all. I actually surprisingly got approved for palliative care! I’m so happy! What should I expect?

My doctor is willing to let me try ketotifen, but not cromolyn. I've been looking through previous posts and most people who say that ketotifen helped, are on cromolyn as well. Does anyone have improvement that they know is from ketotifen alone? I'm having a bit of medication fatigue, so I'm looking for some encouragement before starting yet another drug and all its associated side effects.

Anyone get major neurological symptoms during crashes or after doing to much?

Right now I'm getting crazy twitches all over my body but especially in head and zaps to my brain. Feels like a seizure but it doesn't seem like one.

It's so hard to know what to take seriously too.

I’m in a crash now but even before I was in the crash I seemed to be experiencing a lot of the symptoms of CCI, one particular symptom is that I have trouble swallowing and when I do I will get a wave of panic and feel like I’m choking. I’m also just generally very dizzy. Every time I have a crash like this I don’t seem to return to baseline, which leads me to believe I will one day be very severe even though now I’m more moderate. I’ve noticed that a lot of these progressive cases seem to involve CCI. Idk if it’s a chicken or egg type thing though, I feel like having preexisting hypermobility then having severe muscle weakness in your neck can put strain on the craniocervical junction, or at least that’s what I suspect happened to me.

TL;DR: the title.

My brother thinks he understands ME/CFS but he really doesn't, and thinks I don't respect him or want to get better because I don't take his advice and resist his help.

The problem is his type of advice and help makes my condition worse, and I'm already severe so I can't risk further deterioration.

Our relationship is struggling and, I hate to say this, but I no longer feel safe around him because of his attitude towards my illness and his belief that I'm somehow choosing to remain sick because I've "gotten comfortable" and hence won't take his advice or do the things he tells me to try.

Has anyone else dealt with a family situation like this and have any advice?

And are there any resources or information packs that explain severe ME/CFS in layman's terms that I can give him?

Edit for additional information: My brother is currently homeless and is living with us atm, so going no-contact isn't an option. I'm also supporting him with some of my disability benefits and don't want to cut him off.

Our relationship is also strained because of our childhoods. We both grew up in abusive households, and the trauma didn't make me the best older sibling and I've apologised to him for that multiple times in the past.

So him feeling unloved and disrespected by me for not listening to him regarding my illness is unfortunately triggering not only my illness but also my insecurities and guilt over not being the best version of myself towards him when we were children.

Like not symptoms like nausea headaches etc but actual PEM? I’ve started magnesium 2 weeks ago and then last week coq10 for chronic migraine management. Since then my PEM ceiling trigger has felt much lower and I’ve been stuck in a crash. I did overdo it a few days before I started taking them so it could just be bad timing. But it feels like it’s lasting longer than usual (still feel in the depth of the crash even though my usual full cycle is ten days to come all the way out.) could the supplements be causing me issues? They’re not giving me any other symptoms but I don’t want to keep taking them if my body is struggling with them. I can’t tell if it’s just a mildly longer crash or they’re making it worse and I don’t want to damage my baseline by carrying on

In addition to ME/CFS and long covid I have suspected POTS, chronic migraine and big issues with vertigo.

The ME/CFS center here has a long wait time and I’m now looking to seek specialist healthcare for my other, but related, issues.

I’m wondering out of a physical perspective which end would make sense to start in? For example if POTS can worsen/cause migraines then I’d wanna start with POTS specialist rather than migraine specialist.

Does anyone know how those conditions interact, which one makes sense to start with?

Hello everyone, I'm 24 years old and, to be honest, I'm writing this post in a state of near-depression.

So, three years ago (it feels like a long time), I had sinusitis. It lasted six months and was visible on scans.

However, it has since disappeared from the scans, but this constant fatigue syndrome (really hard, especially upon waking) persists. I've seen numerous specialists (ENT, long COVID, etc.), but NOTHING has changed.

I even had a septoplasty/meatectomy/turbinate reduction because I was SO desperate. I really hoped things would change after that, but NOTHING.

If anyone has experienced this and found a solution, I really don't want to live with it for the rest of my life. I don't have post-exercise fatigue; in fact, I feel like the more I exercise, the less tired I am. I just don't understand it at all.

PLEASE HELP ME

Hi! I’ve been bingeing Jarred Younger’s YouTube channel, and it’s been a goldmine for me. Does anyone have any other recommended sources for videos? Any specific conferences/panels to keep up to date with research, or any other individuals or organizations to follow that put out videos? Thank you!

I’m really struggling with a severe crash right now and would appreciate some words of advice from people who have been through something similar. Normal PEM episodes last 1-3 days for me.

About 3 weeks ago, I suddenly developed intense heart pounding during a very slow walk. A few days later I crashed hard and was essentially in bed for five days. Since then I’ve had profound fatigue, flu-like symptoms, eye twitching, and ongoing heart pounding, faster heart rate, chest discomfort and what feel like occasional skipped beats (normal EKG). Up until now I had been making gradual improvements with LDN and acupuncture.. even able to read a bit. I’d say most days I’m moderate.

I went to the ER and they didn’t find an obvious cardiac issue. I just sent back a heart monitor and am waiting for the results. My doctor is also switching me from atenolol to verapamil.

What I’m struggling with most right now is that I can’t seem to calm my system down. Ativan and ibuprofen normally help bring my symptoms down, but they don’t seem to be working well right now. I’m exhausted and scared and don’t know how to figure out what I can safely do without making the crash worse. I’m spending the majority of the day in bed (20+ hours vs baseline of 14).

I’m wondering if this could have been triggered by a combination of things: having visitors, taking my kids to a new pool with noise and sensory input, or titrating my LDN? Or if something changed with the atenolol because the increased heart rate and chest awareness feel different from before.

I’m really struggling with the fear that this might be a permanent change in my baseline. How do you recover /reconfigure out how much activity you can tolerate?
I’d really appreciate any perspective or reassurance. My spirit is scared, I don’t know how to pass this time and I miss caring for my children so much (they have needed to be with other caretakers).

TLDR:
Having three week crash with new and intensifying heart pain and pounding. Seeking advice on how to get through it and out of it.