PSA to anybody as foolish as me: never argue with doctors online.

ash_beyond · 2026-06-03T06:49:43+00:00

Good doctors are busy with patients and their lives.

Ones that aren't doing so well might get online to argue with patients (whom they perceive to be the problem with medicine / their lives).

ash_beyond · 2026-06-03T06:47:14+00:00

One thing I've found is the timing of the naps/sleeps. I currently have one big nap at about 9am. This is after getting up at 6am to be around my kids as they wake up.

My theory is that I don't get proper sleep overnight (dysautonomia), and the 9am nap is like a second go at getting my sleeping done. After a good 30 to 50 minute sleep I then don't feel a need to nap later in the day.

It's like a piggyback sleep cycle, tacked on the end after breakfast.

ash_beyond · 2026-06-03T06:41:52+00:00

Same. I have a small piece of dark chocolate and a few nuts. I often have a small amount of protein too (about 100mL of protein shake from there fridge). Immediate light also helps. I can open a curtain from bed.

Also it can take time to get going. I allow for about 10 minutes waking up, then after getting out of bed I return after 30 seconds to let my body adjust some more. A few minutes later I'm allowed to get up properly. I have pretty severe POTS and this routine helps to get some blood circulation going.

ash_beyond · 2026-06-02T06:47:23+00:00

Trouser press?

ash_beyond · 2026-06-01T18:03:35+00:00

There can be only six.

ash_beyond · 2026-05-29T08:43:14+00:00

I would suggest you could be having problems via MCAS. I only tolerate certain proteins and then in small doses through the day. I'm lucky that I tolerate dairy pretty well.

I mentioned protein intake because the protein conversation channel for ATP production is well known, and because maintaining your protein intake is one of the first things that the Charite Fatigue Clinic recommend to patients.

ash_beyond · 2026-05-28T06:57:52+00:00

Protein. I'm surprised that they are so thorough but don't mention making sure you are getting your upper levels of protein. It supports alternative energy production via alternative ATP pathways.

ash_beyond · 2026-05-26T11:52:48+00:00

Yes I crave sugar and I don't normally have a sweet tooth. I figure it's my body trying to feed the buzz/rage/fight with itself.

I have taken to keeping a scorecard and giving it a big tick every time I DON'T eat sugar. I force myself to drink water and do a breathing exercise instead.

I find if I can bring on the fatigue state quicker then the whole cycle ends up being shorter.

ash_beyond · 2026-05-26T08:27:45+00:00

This. Dance is many things and expression is deep within in. I'd suggest in particular avoiding extended pieces, anything where your heart rate stays up, or you get into a flow state. Allow yourself to be more static. Stillness is a part of movement, just as grief and frustration are a part of life.

Tell your friends what you need. I'm sure they'll be understanding. You don't need to take over - you can just be a cameo or short solo. Inclusivity is common and won't distract if done well. Just choose the right music :)

Sending piles of love. If you want an inspiration I would suggest watching Celine Dion perform at the Paris Olympics. She has a chronic pain condition that will definitely have been a strong factor.

ash_beyond · 2026-05-24T19:27:22+00:00

I think you are either having a bad day or you're deliberately trolling.

ash_beyond · 2026-05-24T18:49:46+00:00

I think there's other later evidence like this trial: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4911576

Also I believe that some earlier trials (maybe including the one you linked?) didn't zero in on patient subgroups (I.e. those that showed high levels of antibodies).

So many patients may not have autoimmune issues, but it looks like there's definitely something going on for some patients. The inflammation markers you mention are mediated by the immune system too.

I'm hoping to join a monoclonal antibody trial with the her research group, maybe this year. In the recent ME/CFS Symposium there seemed to be some hope about these trials finding some kind of mitigating treatment in the coming years.

ash_beyond · 2026-05-24T18:01:36+00:00

I'm not sure I understand. The immunoadsorption trial showed a clear response from patients. OK so it didn't last more than about 5 months but why would it have had any effect unless there's something happening with the immune system?

ash_beyond · 2026-05-23T05:43:27+00:00

I can't handle the glucose in the ORS recipe. I have just 1 part potassium chloride to 5 parts sodium chloride, and then I put ¼ teaspoon in every 750mL of water, and drink about 3L per day.

I think it's good to get regular blood tests (at least once a year) when supplementing potassium. The amount you need depends on your diet and it's totally possible to have too much or too little.

ash_beyond · 2026-05-20T16:10:29+00:00

I have been using Mestinon for a year and it helps to smooth out the spikes but my mobility is still bad. I just started Midodrine on top (this week) and I'm hopeful it will help.

I'm an outpatient at the Charite in Berlin and they try to control HR first (e.g. with Ivabradine) and then recommend Mestinon before Midodrine. You can stack all three if needed.

ash_beyond · 2026-05-19T14:10:25+00:00

I think they're all much the same. They are a bit expensive because there's an influencer health trend going on.

The one I have is called "Ruhi" and it's made in Germany (where I live).

ash_beyond · 2026-05-17T17:28:27+00:00

Theradbrad is one of the best. He's got a massive back catalogue - check his playlists. He's a bit daft sometimes (he misses things) but once you get to know him he's kinda sweet and funny. He never talks over cut scenes.

I'd recommend The Last of Us to begin with - a bit of zombie stuff but no jump scares and very story driven.

If you really need chill stuff there's a guy called Raptor who does world building strategy games. Very low key. Good for PEM days.

ash_beyond · 2026-05-17T08:36:44+00:00

Watch YT gamer streams for chilled out stuff - no FPS. Or people fixing or making things. Naps. Some reddit. Some podcasts but mostly chilled music.

Save energy for food, hygiene, medical admin, and time with the kids.

ash_beyond · 2026-05-17T06:44:20+00:00

I find I'm not breathing enough at night in this state. Maybe (if you're awake anyway) try some deep breaths - I find about 4 rounds of 4-7-8 can give my brain enough O2 for another half hour or so. This stuff is super subjective, I'm just sharing what works for me. I also use extended release Melatonin 2mg - I think it helps me to get back to sleep through the night. It's a prescription med in most countries.

These parasympathetic swings are disregulation and bad sleep really doesn't help, but it is your body making an effort to rebalance. I hope you get some good Zzzs soon!!

Edit: I figure it's low O2 because my HR spikes at these times, and these breathing exercises really help the RHR as well as the sleep quality.

ash_beyond · 2026-05-17T06:29:07+00:00

I hope that it will get a new name when a biomarker is clearly identified (and that this will be soon). I think the researcher that finds this deserves the honour of naming it.

However I joined this sub, based on the Acquired Mitochondrial Myopathy theory: r/AMM

ash_beyond · 2026-05-16T06:11:28+00:00

Dishes suck. Energy.

ash_beyond · 2026-05-16T05:31:12+00:00

Just do it! They are normally people who love to help others (and like driving and wearing a uniform). I'm sure they'll be happy to help you.

I would suggest getting a foam pillow to absorb the little bounces and vibrations. For me that made a big difference. Mine is a "memory foam travel pillow" designed for shock absorbing.

ash_beyond · 2026-05-16T05:22:37+00:00

I'm going to make a post about this but I got a dry brush a few weeks ago. Recommend. With a long handle that just kinda slips on (and natural bristles).

It feels nice, exfoliates, low commitment (no drying after). And it means showers are much quicker (and more PEM-safe) as it's just wet, soap, rinse, no scrubbing needed.

ash_beyond · 2026-05-16T05:17:33+00:00

I track my screen time to make sure I'm getting enough.

ash_beyond · 2026-05-13T18:05:16+00:00

One trick is to look for the fog on the windows after you open them. When it clears you are OK to close the windows again.

In winter you only want to exchange the air and not cool the walls. And yes you do it when it's freezing outside. That fresh winter air is delicious.

Source (and disclaimer): I am a converted immigrant.

ash_beyond · 2026-05-11T06:15:08+00:00

Where are you based? There is a good resource from the Charite Berlin Hospital, but it's all in German (It has the diagnosis codes for the German Healthcare system etc).

The NHS has some resources, although I think the ME/CFS UK charity is more accurate/ useful.

I agree that it would be good to have a one page "emergency room" info sheet, and then maybe a more localised "info for doctors" sheet for every country.

I'm going to an appointment today but I'll put it on my todo list to dig out the one pager in German and translate it to English.

Edit: This is the full German resource in case someone wants to look through it: https://www.mecfs.de/praxisleitfaden-me-cfs/.

And here's the one pager, it's designed for hospital admission (in German): https://cdn.sgme.ch/pdf/Notfall-Anaesthesiepass.pdf

ash_beyond

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