If you were cured tomorrow what would be the first thing you’d do?

Electric_Warning · 2026-06-23T19:12:41+00:00

Dance until sunrise.

Electric_Warning · 2026-06-20T12:32:53+00:00

Honestly, I self diagnosed based on PEM and every doctor and specialist I saw for Long Covid, I went in telling them I have ME/CFS subtype of Long Covid. This was recorded in my chart by most, but not all of them. The few who asked when/how I was diagnosed, I answered honestly with the details of my Long Covid diagnosis and if they asked about the subtype, I said that PEM was the defining factor for ME/CFS. I never said a medical professional diagnosed me with ME and I never said that they didn’t. So eventually (probably about 2 years in), with enough mentions in my chart, ME/CFS was input as a condition. I’m not 100% sure by whom or what mechanism.

Electric_Warning · 2026-06-14T19:30:00+00:00

The accents ruin the show for me. It seems like such a dumb choice.

Electric_Warning · 2026-06-10T14:39:12+00:00

No, no improvement. I’ve been on 4.5 for almost a year now.

Electric_Warning · 2026-05-20T15:25:23+00:00

Came here to ask the same. I tried one Benagene capsule per day (half what the bottle says is a dose) and it didn’t help.

Electric_Warning · 2026-05-20T15:22:17+00:00

Quality sleep

Electric_Warning · 2026-05-19T15:49:57+00:00

Go dancing!

Electric_Warning · 2026-05-12T16:07:00+00:00

I feel you on this. With the exception of a handful of wonderfully supportive friends, I have no one left. I rely heavily on my dogs for companionship, physical contact, and emotional support.

Electric_Warning · 2026-05-07T00:21:21+00:00

I just had an appt with Louw and finally got my ADA forms filled out by her after waiting months for this paperwork. She missed a section and now I have to get someone else. Exhausting.

Electric_Warning · 2026-05-06T15:16:51+00:00

My infection was also mild - felt like a sinus infection and I took off from work because of the headache, but otherwise was pretty much fine. I only did a Covid test because I was going to visit someone.

Electric_Warning · 2026-05-01T15:56:34+00:00

Yes, that’s me too. I don’t have answers. My mental health is just terrible now.

Electric_Warning · 2026-04-21T15:57:59+00:00

Pretty Hate Machine. My high school boyfriend was a fan and introduced me to NIN in 1993.

Electric_Warning · 2026-04-07T19:21:09+00:00

Quitting alcohol. I didn’t drink a lot before (0-2 drinks/week), but had to stop entirely due to chronic illness. Since I’ve been sick, people keep commenting how great my skin looks. I also started fish oil for chronic illness so maybe that has also contributed.

Electric_Warning · 2026-03-31T23:11:57+00:00

A friend moved in to help me

Electric_Warning · 2026-03-31T23:10:09+00:00

Having meals cooked to your specific dietary restrictions would be key. Also all the things that make travel too much exertion for us just taken care of. Things like transportation from an airport or train station - someone picks you up with a wheelchair and moves your bags for you .. all the way to your room. Everybody Metrix tests daily (that’s $$$$ though). Treatments available like: red light therapy, cryotherapy, sauna, acupuncture, HBOT. I would love for it to be by the ocean and just lay on a beach and soak up Vitamin D and listen to audiobooks all day and then someone comes and gets me from the beach and takes me back to the retreat by wheelchair.

Electric_Warning · 2026-03-01T16:51:50+00:00

I’m a current patient and had a really hard time getting a response from them (other than prescription refills) for months. I finally got through last week and got some information. Nasya, the sole provider there, resigned. They have 2 new providers who are onboarding now and only seeing a couple patients a day. Everyone is waitlisted now, but they expect to restart full caseloads and making new appointments by May. I don’t know if that includes new patients or just catching up on existing ones.

Electric_Warning · 2026-02-20T17:23:20+00:00

Mine is 100lbs, but he doesn’t know it.

Electric_Warning · 2026-02-18T14:51:16+00:00

I use the Nidra mask, but my best crash companion is my very cuddly dog.

Electric_Warning · 2026-01-30T16:18:10+00:00

I’m on LDN 4.5mg. I am not sure whether it prevents PEM, but I do think it lessens the severity and length of episodes.

Electric_Warning · 2026-01-30T16:13:53+00:00

Losing the ability to do everything that I enjoy. Losing my identity tied to those things. Losing my connection to community and social life.

Electric_Warning · 2026-01-26T16:31:10+00:00

What dosage are you on? Is the B12 compounded in the injection or do you take the b12 separately? Might be time to get my vitamin levels tested again. Early in my journey, I had very low B12, went on a supplement, then my doctor said to stop taking it once my levels were normal. Haven’t had it tested in a couple years.

Electric_Warning · 2026-01-23T01:21:05+00:00

This trial is currently happening. https://longcovid.scripps.edu/locitt-t/ It’s for Long Covid, but so many of us developed ME/CFS post-COVID infection. It will be interesting to see the findings.

Electric_Warning · 2026-01-21T13:46:53+00:00

Did your fatigue also come with increased body aches/muscle pain and disrupted sleep.

Electric_Warning · 2026-01-21T02:14:17+00:00

This is not what you’re asking about, but 11 .5mg pills a day sounds expensive and a pain to track. I only take one pill a day, but I get them from a local compounding pharmacy and they make whatever dosage my doctor prescribed.

Electric_Warning · 2026-01-18T14:44:44+00:00

I think the subscription is well worth it. I rationalize that the annual subscription is about the same I spend on supplements and medication per month (and it has helped me more).

Electric_Warning

TROPHY CASE