What helps longhaulers dealing with Chronic Fatigue?

I use a Biomax900 series from this manufacturer, the only FDA Certified RLT panel that has been independently evaluated and the results published in a peer reviewed journal.
https://platinumtherapylights.com/?_campaign_id=6462966710&tw_source=google&tw_adid=705409410427&tw_campaign=6462966710&gad_source=1&gbraid=0AAAAAC9iDbbKCHWqlvd4Bmcea7SH1sxUr&gclid=EAIaIQobChMIurKy77_GiwMVUnd_AB3tsS_cEAAYASAAEgKRBfD_BwE

Just want to weigh in with a point about nomenclature.

Chronic fatigue is often an accompanying symptom of Long Covid. It's a symptom that accompanies numerous medical conditions.
Chronic Fatigue Syndrome (CFS), on the other hand, is a specific diagnosis and condition that has no direct relationship with Covid, per se. It is also referred to as Myalgic Encephalomyelitis (ME), in places other than the U.S.
It, too, is suspected of being a type of post-viral phenomenon, although it has proven difficult to truly qualify and treat, and can have numerous accompanying symptoms.
But please do not label the chronic fatigue many of us experience post Covid as "Chronic Fatigue Syndrome", as it's a separate phenomenon, despite many overlapping symptoms.

@seidholz, @jsg12206 here is more information to the program @mitfit was referring to:
- Fibromyalgia and Chronic Fatigue Clinic at Mayo Clinic https://www.mayoclinic.org/departments-centers/fibromyalgia-and-chronic-fatigue-clinic-minnesota/overview/ovc-20485870

RLT seems to mostly be used for skin conditions.

From the Cleveland medical clinic
"There’s no scientific evidence to support red light therapy use in weight loss, cancer, cellulite removal or mental health conditions like depression and seasonal affective disorder (SAD)."

Can you provide a link to the peer reviewed journal article that discusses its use for conditions like post Covid?

That is great to hear. I thought low dose naltrexone and abilify were doing similar things. So can be taken jointly?

I'm on low dose naltrexone, it helped me to be able to get out of house for leisure. But only for couple of hours. So I'm looking for treatments that allows me to do more.

Thank you @carlosmayo

Hi. Yes you can take the two together. My Stanford LC/ME/CFS clinic started me on LDN and after a number of months the dose settled at 3mg/day. They then started me on Abilify - again at a very very low does (0.1mg/day) and had me slowly work up. I have been taking the two together ever since ... now two years. For the first year and half my health improved about 80%. Then for unknown reason it got worse but I am still 60% better than I was - still a life changing improvement.
Happy to help with any more questions. Good luck to you.

Thanks! That's great to hear. When I'm well I'm about 40% capacity now. I had a bit of relapse as I changed LDN from capsule to liquid. It seems liquid doesn't work for me.

Anyways, I'll stabilise on LDN capsule and ask my GP for new prescription. Would you know any research publication that talks about this protocol?

Are you taking any other medication or doing any treatment for fatigue or PEM?

Thank you!

Hi. I dont know about research on Abilify. Maybe the Stanford clinic website has something ...
You bring up something I have been wondering about - the efficacy of the liquid LDN compared to capsules. How do you know the liquid does not work as well for you? I used to use capsules, but now dissolve a 50mg tablet in 50ml water and take 3ml solution with an oral syringe ... saves over $800 a year in compounded pharmacy bills but I have wondered if it works as well.

Other treatments. When I got worse again I started taking colchicine (0.6mg/d) and plaquinil (300 mg/d). Both have helped some with fatigue and headaches, not as dramatic as LDN or Abilify, but still helpful. Both from the Stanford clinic.

Thanks!

Please don't compound the medication by yourself. One theory why i didn't respond well to liquid LDN is that the new pharmacy i was using didn't know how to do it properly.

So I'm going back to capsule and back to previous pharmacy who are specialised in compounding. Liquid was half of the price of capsule, but if doesn't work, ended up costing me a lot. Probably i could get liquid from this previous pharmacy, but i didn't want experiment anymore.

I'll google around for research reference. Thank you!

Hi Carlos, my GP is looking to prescribe me Abilify. She was asking for the treatment protocol. You mentioned that you started on 0.1mg, how fast did you increased the dosage? Time and dosage wise.

And what's the dose you are taking now? I imagine, that like LDN, the sweet spot very variable per person.

Thank you!