Aripiprazole - Abilify

Here is why I tried it. Fluge and Mella are now trialing daratumumab, which inhibit something cd38, which apigenin also can do at best. I have tried an awfully lot of supplements though, also more common ones that has helped others but not me, this seems to be my lucky shot.


mariovitali said:
Hi all,

So here are some comments and personal views from the conference :

-Still no effort to investigate ME/CFS cases not originating from viral infections. Not good.

-Very optimistic about the case presented by Oysten Fluge and anti-CD38 therapy. I had the chance to talk to him and show some associations of his work in CD38 with other findings in ME, more specifically purinergic signaling , DHFR,nitric oxide, tetrahydrobiopterin. Interestingly , apigenin (identified by machine learning) is a CD38 inhibitor : https://www.s4me.info/threads/apige...amelioration-of-me-symptoms.7872/#post-140372 . In the end of our talk he said : "send me whatever you have" :)))

Of note : One slide on Fluge's presentation has shown that there was no organ damage found in post mortem ME/CFS patients. I specifically asked him whether they looked at liver tissues and he said that they didn't. I then showed some Fibroscans of ME/CFS patients and asked him if they could test patients with Fibroscans.


-I was very happy to see the work presented by Leonard Jason (DePaul University) : machine learning and network analysis methods being used to try to identify key differentiators of ME/CFS vs HCs (see attached photo).

-Also the work by Nuno Sepuvelda who used data from Carmen Scheibenbogen and then applied machine learning algorithms. Quite possibly there will be a joint effort with Nuno who is very committed and enthusiastic for medical research and the use of mathematics / algorithms to crack ME/CFS. (see attached).

-And last but not least , I was able to speak with Dr Prusty. He is very specific to what he wants (which is good) , told me that one of the proteins he found can be found mainly in hepatocytes -as he knows my persistence with everything liver related- and told me to send him anything that I could share with him (which was nice).

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I was really worried about starting LD Abilify after reading some patients reporting negative reactions to it. Was it worth the risk? Well my family guilt tripped me into it and just like LDN... just... absolutely nothing. Can`t feel any difference at all. Kinda funny given how worried I was, and how much I have been seeing it mentioned on the subreddit.

Looking and comparing with the Rituxi trials, I think it is safe to assume that a lot of the ´´improvements`` are just random fluctuations, placebo and the other usual suspects. Of course there might be a small subset who experience a genuine improvement, as reported in this thread. We just don`t know.
 
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Don’t know why I didn’t post this sooner, to show the LDA sceptics that for us temp responders the effects are real. From my phone health app

IMG_3909.pngIMG_3910.png

My housebound baseline is in the few hundreds and you can see for months that’s how I am between LDA cycles. During LDA it shoots up to 7-8k and more average per day! Then the effects slowly decrease until I stop taking it and pause again for months until the next time. Can’t make this shit up it’s doing something
 
@leokitten very convincing data, but I am already a believer.

I wonder if a response to Abilify et al. might be correlated with a response to the biological (mab) drugs.

If yes, you could pre-screen patients inexpensively for 2 weeks. Responders could then be treated with Daratumumab with the expectation of a higher response rate.
 
leokitten said:
Don’t know why I didn’t post this sooner, to show the LDA sceptics that for us temp responders the effects are real.
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I don't know whether I'm counted as a skeptic. I would never disbelieve any pwME's report of their experience, and I'm glad it's periodically still working for you. My concern is, and always has been, that nobody seems to be doing a clinical trial to find out whether this is an unusual or common effect for pwME.
 
If reasonably predictable even a short term effect may have a very real practical value.

I have just had one of my godchildren visiting for a week. He really understands my limitations and did all the cooking while he was here, but I am still needing time to recover and would have loved to do have been able do more while he was here.
 
leokitten said:
My housebound baseline is in the few hundreds and you can see for months that’s how I am between LDA cycles. During LDA it shoots up to 7-8k and more average per day! Then the effects slowly decrease until I stop taking it and pause again for months until the next time. Can’t make this shit up it’s doing something
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Without going through 533 posts in this thread: up to what dosage do you go?
– and how quick ?

In general I’m interested up to what level responders go.
The FB-page and the paper I have seen takes 2 mg as the golden standard.

But I have strong doubts that this is valid specially a) if you read through anecdotes + b) the general different response of (ME-)patients to medication.

I think I’ve read 2 accounts of patients that improved a lot on full dose Abilify - which seems to have a complete different outcome on dopamine.

I think we just know too little about this drug and dopamine + other receptors with ME-patients to know this for sure.
 
Yann04 said:
My worry, is that it just masks symptoms/PEM which allows you to do more, hence the very common “poop out” experience.
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The crash may come even if you don't do more. Drugs often entail withdrawal when you stop taking them and you could crash if the brain produces less of what was protecting you from symptoms/PEM. Nicotine seems to be particularly bad in that regard. If the effect lasts weeks and the withdrawal is minimal, however, it may be worth the risk. That's what @leokitten seems to have with LDA.
 
poetinsf said:
The crash may come even if you don't do more. Drugs often entail withdrawal when you stop taking them and you could crash if the brain produces less of what was protecting you from symptoms/PEM. Nicotine seems to be particularly bad in that regard. If the effect lasts weeks and the withdrawal is minimal, however, it may be worth the risk. That's what @leokitten seems to have with LDA.
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Would have to test. But the fact the survey ran by the Abilify facebook group, which surely has a bias towards people who find the drug useful, found that >50% of people ended up worse than before they started after the drug “pooped out”.

Makes me sceptical of claims it “works” for ME/CFS. And in my mind just reinforced the need for a double blind RCT before doctors push this on patients or claim that it works.
 
Yann04 said:
the fact the survey ran by the Abilify facebook group, which surely has a bias towards people who find the drug useful, found that >50% of people ended up worse than before they started after the drug “pooped out”.

Makes me sceptical of claims it “works” for ME/CFS. And in my mind just reinforced the need for a double blind RCT before doctors push this on patients or claim that it works.
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Do you remember when that survey was published?
- like year / month ?

I’m considering trying LDA so trying to compile all data.
 
Arfmeister said:
Do you remember when that survey was published?
- like year / month ?

I’m considering trying LDA so trying to compile all data.
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Yann04 said:
I honestly have no clue. But I think it was displayed prominently on the facebook page as of maybe 1.5 years ago?
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You can access the polls by joining the group and looking at the "featured" posts - there are at least 7 of them, and the results are not always particularly consistent. I am guessing that the poll to which Yann04 (please correct me if I am wrong) refers is one posted on 7 February, 2021, as it is the only one I see with a result that sounds similar to what is described. The question posed was "For those of you who have stopped taking Abilify [my emphasis], are you..." with 58% reporting "Worse than initial baseline," 28% reporting "same as initial baseline" and 14% reporting "better than initial baseline" as of 4 Nov 2025.
 
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For what it's worth, the top pinned poll under "Featured" posts, this one originally posted 16 January 2021, reports the following results:
I have not tried Abilify 66%
Abilify has helped me 13% (93 people as of 4 Nov 2025)
It's too early to tell if Abilify is helping me 8%
Abilify did help for a time but lost its effectiveness 4%
I have been taking Abilify for at six months and it is still helping me 2%
I have been taking Abilify for at least twelve months and it is still helping me 0%
I have been taking Abilify for at least two years and it is still helping me 2%
Low dose Abilify did not help my ME/CFS 2%
I could not tolerate low dose Abilify 2%
Abilify helped my family member 1%
Low dose Abilify made my ME/CFS worse 0%

Also, as a note: Even by the standards of most social media polling, Facebook polls are terrible - it is very easy to accidentally vote and the process to remove or alter a vote once cast is not intuitive, so many leave them uncorrected. It is also possible to vote for multiple options, even contradictory ones, by default.
 
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