How are the super long-haulers doing 3 to 4 years out?

Thank you. Yes I am all too familiar with PEM, unfortunately. I am going on 4 years now, and the PEM crashes are worse today, so I really need to focus on pacing, which for me is the hardest thing I have to do. I think I am getting better and then I do too much and it hits me. The last 8 months has been a lot harder because my wife is going through treatment for ovarian cancer, so I find I have to really do daily meditation, deep breathing, progressive muscle relaxation and pacing.

I have not checked out his site - I will check into that as well - thanks.

One resource that I had used to gently provide to my PCP was the Bateman Horne Center. It is more targeted to the medical community, but still somewhat useful.

Thank you! I was given multiple types of inhalers like albuterol and steroids, the strongest one was trilogy, but nothing helped. 5 pulmonary function tests revealed small airway changes but all the doctors say wouldn’t cause difficulty breathing. Did you get the inhaler because of some kind of diagnosis?

I so relate to what you're going through. And...am sending a big hug for you and one for your wife too.
I have found that yoga nidra meditations really help me. However, when I'm going through a PEM, only rest seems to work.
I take, specifically, Astragalus and L-Carnosine which have helped with muscle strength and energy...and most recently (in the afternoons) ATP. All of which help a tiny bit during PEM...but, resting seems to be the best. (PEM is the worst...)
I'm going to try to see if resting before an event will actually allow me to participate. Fingers are crossed. My extended family invited me to Easter brunch and I'm going to see if I can do it by doing practically nothing for about 3 days before. (I get PEM from both cognitive and physical exertion).
I'm afraid to do 'progressive muscle relaxation' because it involves the use of energy when 'tensing'.
Gosh...and to think: I used to hike all over the nearby Sierra Nevada Mountains! Those days (sadly) are behind me.
My best to you and your wife.

P.S. - Yes...Bateman Horne Center is a great resource too. But, overall, I love Gez Medinger's site. He's so down to earth and is going through it also. Bless him for sharing it all with us.

When I have a 'big event' (family party, evening outing, etc) I do nothing the day before, really light stuff 2 days before and block out my calendar the following day. This got me to and recovered from a Rolling Stones concert & a professional hockey game!!! Both had tons of auditory & visual stimulation, along with what I now know is 'complicated' brain work-getting to an unfamiliar place, finding the right entrance, finding my seats and a bathroom. Basically , an 'event' costs 3 days-it helps me choose what is worth that.

After 5 years, I'm finally seeing the light at the end of this long tunnel! I'm so happy and am now down to 1 Lexapro in the morning and a low dose Ambien at night. After many, many years of trying so much! I'm going to make it! We are all going to make it.

It’ll be 3 years in May. PEM and POTS are my worst symptoms! And I am beginning to see the light at the end of this horrific tunnel. I still pace (and feel it a blessing to prioritize vs take on a multi-tasking, save the world approach — but I can now do more, catch myself quicker if I’m getting over stimulated, and recover quicker. Somatic breathing is very important. Yoga nidra is my daily go to — and it measurably increases the amount of deep sleep I get at night. I watch diet carefully: no caffeine or alcohol, lots of hydration (adding fresh lime or lemon and a pinch of Himalayan sea salt), try to eat at least small amounts of 10 or more different fruits and veggies a day (easier than you think using handfuls of frozen stuff in smoothies). I do small reps of stretching and yoga things (that can be done lying down) throughout the day. I have prioritized self-care over past practices of caring for everyone else first. I modify activities — write long hand vs on computer, sunglasses for bright tv or computer screens, preplanning to minimize unnecessary trips up and down stairs, a cane when I go out; and I do lots of self-talk — things in the present tense like I am healthy, I am strengthening more everyday, I am beating this, etc. I take supplements — co-Q 10, B, D, quercetin, alpha lipoic acid, 5HTTP, L-carnitine. I do self-leg massage, jacuzzis, a ground mat — things that can help rebuild nerve endings, etc. in my legs to return blood faster to the heart (I had neuropathy testing recently at the Mass General Clinic). Tune into yourself and believe!!! Read “Cured” by Dr. Jeffrey Rediger. We can heal our immune systems with time and persistence. God bless all long covid sufferers!

Thank you for sharing your method! This helps me a lot!
I think I've still be trying to do too much.