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I’ve been writing about my experience on starting a second cycle of low dose abilify on PR. Took a more than six month break from it after stopping the first cycle. Started almost two weeks ago. So far I am feeling very lucky and counting my blessings, because it’s appears to be working pretty...

Ugh, reading this makes me feel so sad. I’m sorry there’s a paywall so I pasted the text here, but you don’t see all the article photos. I’m just so tired of seeing stuff like this so much reinventing the wheel, so much thinking this is new when it’s not, no saying same as ME/CFS when the...

I will try Abilify again in May Ketogenic diet did cause a sudden and very substantial improvement in many of my symptoms but not nearly as broadly or as good as Abilify was. And keto required so much more work and energy to maintain. Abilify vastly improved or made nearly disappear almost all...

In the U.S. it’s been this kind of experience for much of society compared to what I’ve seen and experienced when I was living abroad. So for me this type of book seems long overdue here. There has been way more societal pressure to overwork, overachieve, overdo, never stop, etc, since the...

Anti-capitalism is flooding TikTok as young people question a life that prioritizes productivity over well-being

Do Nothing: How To Break Away From Overworking, Overdoing, and Underliving by Celeste Headlee https://celesteheadlee.com/do-nothing-book/

I think because LC, PVFS, and ME have such nearly identical symptoms in so many people that this LC research will truly help us, even without recognition. I don’t care if they interchange the name of what looks to be the same underlying disorder

He Was Given 6 Months to Live. Then He Changed D.C. https://www.politico.com/news/magazine/2022/01/14/brian-wallach-als-advocacy-527094

My sleep got close to normal with Abilify the first couple months. But like it’s other astounding effects it slowly started losing efficacy over months after that. I was in tears at the beginning because I was sleeping almost like pre-ME and had totally forgotten what that felt like.

I will definitely try Abilify again in April with the hope it will work again in the astounding way it did for a few months. That would be wonderful if I could cycle like this over and over again even to get 4-5 months of feeling so much better and being able to do more during this time every...

For me the decline in Abilify ME symptom improvements was a slowly building thing over months. I think my experience was different than what some others have reported where it went from working great to suddenly not working at all within a few days or a week. Hindsight being 20/20 and that I've...

I stopped Abilify in October, even though it was still working though not nearly as well as the first few months on it, with the hope of cycling back on it next year and getting the same effects. I didn’t experience withdrawal effects and it didn’t get worse but I have gone back to moderate...

So far since Sept 4 when I had the last report and blip I’ve really bounced back to how I was on Abilify before. Lowered Abilify dosage to 0.25 mg / day and still doing relatively great with only infrequent downturns that last a day or two and driven by worsening sleep disturbances but have...

Pure speculation but maybe this line of research or the methods used in the paper to understand immune cell metabolic reprogramming via single-cell multiomics could eventually help explain whatever possible cellular metabolic changes that are triggered and persist in Long COVID and ME/CFS…...

On the brilaroxazine front, good news from Reviva Pharmaceuticals, they raised $34.5 million from investors and will start phase III trial of brilaroxazine for schizophrenia in Q4 this year. So if things continue to be successful the drug will be FDA approved and available in the US in 2025...

I want to report that the last two nights and following two days my sleep again went back to pre-ME great and during the day I’ve suddenly felt as well as I’ve ever felt during Abilify. I’ve only been off the med for a couple days so it’s still pretty much near the plasma concentration my body...

Will do, but funnily I’m actually in the category of ME forum users that if I’m on the forums less means I generally have more energy and feel better and am busy trying to live some form of life, when I’m on the forums a lot usually because I’m bedridden 24/7 :grumpy: or something really...

Yes, this is what so many people who understand little about ME seem to miss when they give their two cents. That unlike other chronic conditions like, e.g. heart disease, diabetes, etc, doing significant physical or mental activity is actually damaging to ME, you feel like you have been...

I would say the main efficacy change, that at least in my illness strongly negatively affects the other ME symptoms, is related to sleep. After starting Abilify, my sleep immediately and suddenly went from bad ME disturbed and unrefreshing to pre-ME. I had totally forgotten how I used to sleep...

I’m almost 7 months on low dose Abilify and now I would say I’m starting to feel some significant tolerance or reduction in efficacy. It’s still working well though tolerance has been a very slowly increasing phenomenon, which is different than what many others have experienced. I’m going to...