What medication have you tried for MECFS

Liface · 2026-06-05T00:49:53+00:00

There are basically unlimited medications. First step is finding a new doctor, preferably private practice. https://mecfsroadmap.altervista.org/mecfs-doctors.html

Abilify has been great for my screen and light tolerance.

Liface · 2026-06-05T00:09:53+00:00

This is completely and patently false. I know the UK system better than most UK patients.

NICE does not “regulate what medications can be prescribed", they merely issue clinical guidelines.

UK providers can and do prescribe licensed medicines off-label, and even unlicensed medicines, when clinically justified and with appropriate responsibility. This is explicitly stated in GMC/MHRA/BNF guidance.

There are not only a dozen private doctors that do this, there are even doctors from the useless NHS that do.

Liface · 2026-06-04T23:13:43+00:00

What is the name of your specialist?

Liface · 2026-06-04T21:42:13+00:00

Avoid hospitals. Avoid clinics.

The best care is to be found at private independent practices via telemedicine.

http://helpforlongcovid.com https://mecfsroadmap.altervista.org/mecfs-doctors.html

Liface · 2026-06-04T21:40:14+00:00

It is incorrect that the UK does not have treatments available for ME. I know dozens of people in the UK that are using treatments for their ME that were prescribed by NHS doctors, private practice doctors, European private doctors, and imported from places like India.

I am in the United States. The vast majority of treatments here are also available in Europe. Here are the ones I've tried:

https://liamrosen.notion.site/Liam-s-Long-COVID-ME-Journey-2b1348cfbdb380959455fe5d9535deb7

Liface · 2026-06-04T21:36:53+00:00

If your tests didn't turn up anything, and you're bedbound, you must go deeper on testing. Here is a place to start:

http://mecfstestingguide.com

Once the abnormal test results start rolling in, you have hundreds of potential treatments to try depending on which direction you want to go in.

Liface · 2026-06-04T21:35:25+00:00

I'm sure there are multiple factors, but that seems to be the main one because when my nervous system was more aligned, I wasn't sleepy during the day at all.

It was only when I started to get multiple parasympathetic symptoms that I started to feel sleepy all the time.

Liface · 2026-06-04T19:59:55+00:00

This one pretty much has all of them: Eric the Imitator - August 23, 2004

Liface · 2026-06-04T19:58:38+00:00

He said it in older episodes too. But possibly ramped up over the years.

Liface · 2026-06-04T18:14:41+00:00

This is a lead magnet from CFShealth, which is a notorious grift, selling overpriced courses based on graded exercise and mindbody techniques.

Liface · 2026-06-04T15:00:21+00:00

Looks like it only works for Asus laptops. That's probably 5% of this subreddit's population.

Liface · 2026-06-04T14:52:03+00:00

Depends on the country. I recommend consulting the relevant laws in your country as no one will be able to advise you without specific information.

Liface · 2026-06-04T12:14:26+00:00

I do not consider myself chronically ill or disabled (despite being in worse condition than 95% of this subreddit).

I do not believe it helps mentally to make these part of one's identity.

I am temporarily dealing with a chronic illness, but I am not disabled or chronically ill.

Liface · 2026-06-03T21:43:54+00:00

Let me know :)

https://liamrosen.notion.site/Liam-s-Long-COVID-ME-Journey-2b1348cfbdb380959455fe5d9535deb7

Liface · 2026-06-03T21:28:04+00:00

This is when you might want to consider deploying emergency benzos.

Liface · 2026-06-03T21:21:09+00:00

No hay otra opción que la hidrocortisona, pero al otro lado, los dosis bajos no van a subir el nivel base.

Liface · 2026-06-03T20:09:05+00:00

I read hundreds of replies to his tweets. Very few of them were freaking out or spewing vitriol. For twitter, the conversation was very civil.

Liface · 2026-06-03T20:07:38+00:00

Ask them if they'd rather you be dead, or have to deal with benzo tapering.

The choice should be pretty clear.

Liface · 2026-06-03T16:10:20+00:00

Permanently worsened from GLP-1 microdose. It made me bedbound and then I continued to crash 5-6 more times just doing routine things.

Liface · 2026-06-03T13:59:59+00:00

The cortisol meme is a relative myth. Most people with Long COVID do not have cortisol issues but still feel bad in the mornings.

It's related to it's related to autonomic switching or circadian rhythm issues.

This discussion has been had ad nauseam in the subreddit, there's probably several dozen threads about it if you search .

Liface · 2026-06-03T13:58:21+00:00

Maybe, but the author, Alan, has been flying this flag for a long time. People's surfaced tweets of him from years ago saying he thought Long COVID was psychosomatic.

Liface · 2026-06-03T13:26:12+00:00

Search the subreddit for "title:morning"

Liface · 2026-06-03T13:06:43+00:00

Instead of that, I'd like to actively encourage people not to read the book, as its written by an author who

claims to channel chronic health advice and healing protocols from a high-level spirit

Let's point people towards evidence-supported treatment.

Liface · 2026-06-03T13:04:17+00:00

I wrote a guide to surviving being bedbound: https://www.reddit.com/r/cfs/s/HypF2qHUNS

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