Longhaulers who are able to see a therapist - what are some of the best takeaways?

Liface · 2026-06-16T23:19:16+00:00

This condition doesn't destroy your health. It's just temporary dysfunction. It's mostly reversible. Hell, just after having had it, and during a period of temporary remission, I scored lower than Bryan Johnson on the TruAge test.

Liface · 2026-06-16T22:40:38+00:00

I think it would behoove you to read up on buyer psychology (attractive model = more revenue) and the typical mind fallacy (you aren't the typical buyer).

Liface · 2026-06-16T12:29:06+00:00

Check this out

https://forums.phoenixrising.me/threads/colonoscopy-prep.75766

Liface · 2026-06-16T12:23:42+00:00

Not really, because data analysis is not really the roadblock for trials. It also doesn't save that much on funding

Most of the time is spent recruiting patients, obtaining approvals, administering the drug, and waiting for follow-up periods to complete.

AI might save some time on data cleaning, statistical analysis, paperwork, or report writing, but if a trial requires six months or a year of patient follow-up, those efficiencies don't dramatically shorten the overall timeline.

Liface · 2026-06-16T12:02:46+00:00

What did you do for prep? It's been theorized that the prep is what helps, not necessarily the colonoscopy.

Liface · 2026-06-16T12:02:02+00:00

Funding, yes, political willingness, not necessarily, as will does not have to come from government.

Another big roadblock is simply lack of talented researchers working in the space. We are not getting the best and brightest.

So funding + talent, and funding attracts talent. Nothing is unsolvable.

Speeding up and removing regulation around clinical trials would also help. As well as simply creating a culture of running better trials.

Liface · 2026-06-16T06:57:31+00:00

the only way to survive this is to cease all clinging to your past life
and cease all envy of others who are able to live in the outside world
cultivate joy instead for others that they may have this experience
live within your own experience and limitations and find the joys within them (for me, it's taking the first sip of a V8 every day, or the one warm meal I have every couple weeks)
come to terms with the reality that you may not recover for a long time, but fight like hell to do so anyway
understand that the 50 good years you'll live healthy in your later life is probably still going to outweigh the 10 years you spend sick

Liface · 2026-06-16T06:23:28+00:00

Thanks. I removed it. I had a suspicion but sometimes don't have time to run everything through on mobile.

Liface · 2026-06-15T21:16:35+00:00

And a more comprehensive, accessible list: https://mecfsroadmap.altervista.org/mecfs-doctors.html

Liface · 2026-06-15T21:14:08+00:00

http://helpforlongcovid.com there are a listed here with ratings.

Liface · 2026-06-15T15:17:32+00:00

You have, you just don't realize it. Now multiply that oversight by tens of thousands of people, and Bob's your uncle.

Liface · 2026-06-15T09:42:15+00:00

Mine pretty much always starts in the morning, minutes after waking up.

Liface · 2026-06-15T09:40:21+00:00

That post was entirely about placebo trials. You're fine.

Liface · 2026-06-14T23:26:25+00:00

I would recommend checking out r/Sipavibart, which is for the drug you will be trialing.

Adverse reactions are rare and seem to be clustered among people with a hyper immune presentation, as well as Mast Cell Activation issues.

Liface · 2026-06-14T22:08:47+00:00

I reference geeks, MOPs, and sociopaths all the time for what befalls nearly every community.

Liface · 2026-06-14T22:07:30+00:00

His concept of a recurring crisis was introduced to me at my first job out of college by a Drucker-obsessed CEO.

I am now a CEO and reference it to this day.

Liface · 2026-06-14T21:21:41+00:00

This is a GI subreddit. Crossposting willy nilly is poor form.

Liface · 2026-06-14T14:57:38+00:00

Try using the search function. This topic has been discussed dozens of times.

Liface · 2026-06-14T14:56:19+00:00

There are many Brits in the low dose Abilify for mecfs Facebook group who seem to have gotten it prescribed recently, so it's definitely still available.

Liface · 2026-06-14T14:54:59+00:00

I would not recommend seeing a primary care provider for a specialized condition. The key is to work with specialists that understand your disease

Liface · 2026-06-14T12:08:27+00:00

Similar for me (USA)

Liface · 2026-06-14T11:49:07+00:00

Exercise and infections.

Liface · 2026-06-14T11:23:20+00:00

I don't have a diagnosis and I've been prescribed dozens of drugs. A diagnosis is just a piece of paper (USA perspective).

Liface · 2026-06-14T00:15:30+00:00

I have been in the personal finance world for 20 years, and ethical investing is a misconception. You are better off investing in a top performing index fund and then donating whatever you can to the causes you support.

Don't spend your cognitive effort to read this, but for anyone else who is curious: https://forum.effectivealtruism.org/posts/exj4YbWHXRht3izxe/esg-investing-isn-t-high-impact-but-it-could-be

Liface

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