leokitten
Senior Member (Voting Rights)
I’m not sure if you are crashing and bedridden a lot while on LDA if it’s going to work for you. I’m housebound moderate normally not severe
Aripiprazole - Abilify
- Thread starter Jim001
- Start date
-
- Tags
- abilify aripiprazole
neophyte32
Established Member (Voting Rights)
Thanks for your answer
So u are moderate and mild with LDA.
A lot of severe patient are taking LDA, with success.
I m at 0,50 mg, i think i m gonna stop next week if i have no improvment.
I am afraid off withdrawal s effects so i will decrease to 0,35 for on week then 0,20 and stop.
It was a very good experience, 3 months with 1500-2000 steps and better screen s tolerance. Maybe it will work again next year.
Arfmeister
Senior Member (Voting Rights)
This is a overview I once made based on 4 sources -( so excluding the Facebook ones):
| TOTAL | |||||||
| Phoenix Rising-poll | **X-poll** | Martha Eckey - TREATME Survey 2023 | Anecdotes | TOTAL | |||
 | 3 | 1 | 4 | ||||
| 7 | 4 | 11 | ||||
| 4 | 54 | 73 | 9 | 140 | ||
| 2 | 2 | 53% | | |||
 | 6 | 30 | 30 | 4 | 70 | 23% | |
 | 6 | 30 | 33 | 2 | 71 | 24% | |
| 298 |
Last edited by a moderator:
Moderator note
Please do not post information from a closed Facebook group.
We have removed some posts that copy and discuss information, including survey data, from the Abilify Facebook group.
Our forum Rule 2b says:
"No material from the members only area of this forum may be copied or discussed on other social media."
The reciprocal also applies - we don't allow copying or discussion on the forum of material from other private or members only social media.
Please do not post information from a closed Facebook group.
We have removed some posts that copy and discuss information, including survey data, from the Abilify Facebook group.
Our forum Rule 2b says:
"No material from the members only area of this forum may be copied or discussed on other social media."
The reciprocal also applies - we don't allow copying or discussion on the forum of material from other private or members only social media.
Last edited:
Thank you for sharing this. Would you be willing to clarify how this is organized?This is a overview I once made based on 4 sources -( so excluding the Facebook ones):
TOTAL Phoenix Rising-poll **X-poll** Martha Eckey - TREATME Survey 2023 Anecdotes TOTAL 3 1 4 7 4 11 4 54 73 9 140 2 2 53% 6 30 30 4 70 23% 6 30 33 2 71 24% 298
Arfmeister
Senior Member (Voting Rights)
Disclaimer:
As you mentioned these online polls are often simple questions and differ in their set-up.
- but poor data is always better than no data.
- especially if you want to make a decision on trying LDA
Sources:
- The TREATME Survey 2023 by Martha Eckey is actually quite detailed (50% ME CFS / 50% Long Covid)
- X-poll done in 2024
- Phoenix rising 2021
- Anecdotes (from online accounts and sometimes patients I know)
Legend Explanation:
= Major response ( > 50% improvement) = Good response (> 10%) Small-Medium (1-10%)* = same / nothing happened
= worse / adverse events(* note there’s one change I wanted to make as there 2
’s - but I cannot make any changes in the table anymore)
Rick Sanchez
Senior Member (Voting Rights)
After being off Abilify for some time now I do worry that for some patients it ´´masks`` cognitive PEM symptoms and thus leads to patients overexerting themselves.
Last edited:
Is this to say that you feel you can now recognize PEM that you were experiencing whilst on LDA and which you did not recognize as such at the time?
Rick Sanchez
Senior Member (Voting Rights)
Think the effect when I took LDA was so gradual I basically hadn`t really noticed until I stopped taking it. My PEM with LDA was much better. Only really noticed last week after I was social with my best friend where I could not stop talking. Had my usual brutal hangover flu PEM afterwards, which I still feel the effects of as of writing this.
The thing is though I am not sure that the less severe PEM is a good thing. I think I was constantly overexerting myself during LDA which might have caused my tinnitus to worsen. At first I thought the tinnitus was just worse due to catching a bug, but now with hindsight I think I was often slightly overexerting myself because there was barely any PEM to stop me when I slightly overdid it.
Sadly, there are so many variables with MECFS, especially my kind which fluctuates a lot, so who is to say. The only thing I can say for certain is that my fitbit data looks no different from before, during and after LDA.
Last edited:
leokitten
Senior Member (Voting Rights)
I would say everyone is different, and the fact that your ME normally fluctuates a lot means it's very difficult to reliably attribute symptom changes or new symptoms to LDA use. My baseline ME doesn't fluctuate that much. I've cycled LDA since the beginning of 2021, so quite a number of times, and I've never noticed any kind of baseline worsening when off LDA. In fact, I do believe the time I've spent on LDA has actually helped my body and helped slow down long-term gradual worsening of my baseline.
At least for me, my regular baseline ME state feels like it's constantly hurting my body and brain, that this chronic state has long term gradual damaging effects on me as I age, basically accelerating my aging. When on LDA I seriously feel like that constant damaging feeling is on pause and my body and brain feel much, much happier physically. It just sucks that it doesn't work for longer and I have to cycle it.
Last edited:
Arfmeister
Senior Member (Voting Rights)
I’ve have now completed an overview with more patient experiences and online data (n=538)
This overview table includes 101 patient experiences and 437 ME/LC responders from online surveys (n=538)
- 55% clear/partial benefit =
- 23% no benefit =
- 23% harm/lowered baseline OR early stop because of side effects =
(n=293)- estimation: 30 to 60% experiences a poop out (but can get back to old baseline) ⇒
- estimation: 30 to 60% experiences continuous positive improvement
- estimation: 1~2 % Super-responders
Here’s a previous thread I made which includes side effects, benefits, type of responses, cautions, etcetera
Last edited:
Interesting.
Is there some risk that some individuals are being counted more than once, as anecdotes, and taking part ìn multiple surveys?
Is there information on how long they have been on the medication, and the magnitude and duration of change in symptoms that they report?
It's high time the doctors prescribing this set up a proper clinical trial.
Is there some risk that some individuals are being counted more than once, as anecdotes, and taking part ìn multiple surveys?
Is there information on how long they have been on the medication, and the magnitude and duration of change in symptoms that they report?
It's high time the doctors prescribing this set up a proper clinical trial.
Arfmeister
Senior Member (Voting Rights)
Yes, I presume there will be some double counting. And bias. Maybe more responses from more outspoken responders. Etc.
Factor that in.
This is like Stone Age caveman data collection
Arfmeister
Senior Member (Voting Rights)
Some of the patient anecdotes are legit in my opinion - instead of incidental / random.
I’ve had some online contact with a few.
If possible, I try to filter the anecdote for legitimacy because the data needs to have as much value as possible for myself
Jonathan Edwards
Senior Member (Voting Rights)
What constitutes 'legitimate'? Even in carefully controlled trials we have no idea whether the drug caused an improvement or worsening in an individual unless we have some objective pharmacodynamic data.
Arfmeister
Senior Member (Voting Rights)
As in patient anecdotes/experience that are legitimate for me
Without getting into such detail, that I will have me crashing my brain today (which is not worth it)
- I verify patient anecdotes - if possible - with +10 questions via direct message
- to understand specifics of Patient and scale + sustainability improvement
(I dó mainly chase & verify improvements)
The reality is that we have a ‘poor man disease’, with lack of data and medical experience (beggars can’t be data-choosers)
- so to understand the reality and treatment potential better - I try to collect a lot of anecdotes to understand various treatments better
Anyway I share, because I think it might come in useful for some
- Critical thinking is expected (on S4ME)
Last edited:
Thanks for your careful work monitoring social media and compiling those statistics @Arfmeister.
I note Trish's point as a moderator above about not copying posts from closed social media groups or discussing specifics but I think your thoughts on the following based on what you have seen on social media would be interesting:
Where are most of the people who have tried Abilify for ME/CFS from?
Are they mostly getting the Abilify from US clinics/ particular clinics?
In the social media discussions, are people calling for/pushing for a formal trial of it?
Is there any criticism of clinics who are continuing to prescribe the drug without making efforts to do a proper study?
Do people understand that the 'Stanford trial' was not helpful and in any case really only found results consistent with a placebo effect?
(Thread on the retrospective Stanford trial here.)
Do we know, are there any trials of Abilify for ME/CFS or LC underway?
I note Trish's point as a moderator above about not copying posts from closed social media groups or discussing specifics but I think your thoughts on the following based on what you have seen on social media would be interesting:
Where are most of the people who have tried Abilify for ME/CFS from?
Are they mostly getting the Abilify from US clinics/ particular clinics?
In the social media discussions, are people calling for/pushing for a formal trial of it?
Is there any criticism of clinics who are continuing to prescribe the drug without making efforts to do a proper study?
Do people understand that the 'Stanford trial' was not helpful and in any case really only found results consistent with a placebo effect?
(Thread on the retrospective Stanford trial here.)
I note in your X thread posted above the 1% of people whose experience was described as 'very bad', balancing the 1% of super-responders. The number of people reporting a clear or partial benefit is almost balanced by the people reporting no benefit or harm. Given the likely bias towards reporting benefits on social media, it's hard to get excited.
Do we know, are there any trials of Abilify for ME/CFS or LC underway?
Last edited:
Yann04
Senior Member (Voting Rights)
Oh I’m not arguing those improvements weren’t legitimate. I believe they were. I’m just not convinced we can know of any causality. Even top researchers administering the treatment themselves like Fluge and Mella can’t tell.
Arfmeister
Senior Member (Voting Rights)
Europe, North America, Australia. Where most online Patients come from (I think).
Mostly from ‘individual’ doctors (often psychiatrists).
(Patient often use the ‘faulty’ Stanford study to convince their doctor.)
The only clinic that regularly prescribes LDA is Dr. Bonilla / Stanford (as far as I can assist from my observations)
Not that I recollect. Most Patients that discuss their LDA experiences are not focused on advocating for trials.
(And patients without LDA experience are more interested in pushing for breakthrough therapies/treatments - as I see it)
That’s very difficult to verify.
But what is clearly noticeable is that most of the current patients trialing LDA are aware for the need for a very slow approach of microdosing*
Bonilla also promotes this, but I don’t know if any other doctors are aware.
*what I can assess from patient experiences / commentary is there is more awareness of the risk of a) poop out and b) side effects
- This is much less with a very slow titration approach
- AND, if not effective (anymore) - it’s important to have a very slow taper off
- ALSO staying 3 months at starting baseline (don’t increase activity) is a recommended rule in patient communities (e.g. FB groups) and also recommended by Dr. Bonilla.
I m not aware
Last edited: