Abilify- Stanford Clinic Patients

[leokitten]

It's tragic for me that it doesn't work anymore but I very much hope that they look closer into the mechanism of action. They failed to do so with Ativan which is driving me nuts!

I’m really sad Martin that it doesn’t work for you anymore even after a 6 month break, whereas for at least for a couple others it worked for them cycling like this. But I am not totally surprised, ME is a crazy illness like this, the same thing happened to me with the keto diet it was like almost a remission in the beginning and then after months it slowly stopped working. It’s like the ME adjusted permanently which is something I’ve never seen or heard of in other diseases or disorders.

 

[leokitten]

Especially Dr. Bonilla who responded to my question about what one could do if Abilify stops working that he WOULD NOT BE AWARE OF ANY CASE though I know that he is. He just lied to me and hundreds of others and his colleagues and as a consequence stopping them to take a closer look.

What a moron, he is not serving our community well at all. I hope other clinicians at the conference who are prescribing Abilify and seeing what we are seeing just rolled their eyes at Bonilla’s response to your question. I don’t even get his motive for lying!!!

 

[Martin aka paused||M.E.]

It’s like the ME adjusted permanently which is something I’ve never seen or heard of in other diseases or disorders.

It's not only ME. It's also depression, bipolar disorder, ADHD among others that involve the brain. But yes, in ME it seems to be very hard to fight homeostasis. If the CDR is right, that might be a piece of the puzzle. But: Only God knows...

 

[Martin aka paused||M.E.]

don’t even get his motive for lying!!!

Reputation. From what I have heard I consider him to be quite narcissistic.

 

[Marylib]

Finally, thank you. That's what I was talking about one year ago when no one believed me.

It's tragic for me that it doesn't work anymore but I very much hope that they look closer into the mechanism of action. They failed to do so with Ativan which is driving me nuts!

It might be a bandaid that only works for a certain amount of time. But it has the potential to tell us more about the pathomechanism involved in PEM bc at 4 mg it did not have ANY PEM AT ALL, not from exercising nor working 12 hrs per day/ 7 days a week!

I'm so disappointed with what happens in research. Watching the IACFS/ME was such a disillusionment.

Especially Dr. Bonilla who responded to my question about what one could do if Abilify stops working that he WOULD NOT BE AWARE OF ANY CASE though I know that he is. He just lied to me and hundreds of others and his colleagues and as a consequence stopping them to take a closer look.

End of story.

Oh no...he straight up lied to them?..I was afraid of that. Why in the world would he do that?

 

[Marylib]

Reputation. From what I have heard I consider him to be quite narcissistic.

That's all we need! We have enough of that from the psych cabal in the UK..How dreadful.

 

[Martin aka paused||M.E.]

Oh no...he straight up lied to them?..I was afraid of that. Why in the world would he do that?

Hell, I even wrote him after the conference for clarification. Take a look:

 

[Marylib]

What a moron, he is not serving our community well as all. I hope other clinicians at the conference who are prescribing Abilify and seeing what we are seeing just rolled their eyes are Bonilla’s response to your question. I don’t even get his motive for lying!!!

@leokitten Is he trying to convince people that this was not a collection of doctor's notes? I mean, it's quite fair to present something like that. Everyone knows it was not some kind of double blind trial with healthy controls, but I am just appalled. How does that help you or those who didn't do well on it? That clinic must be a shambles. I hope someone can figure out how to keep it open and running , since we have so few. I imagine that the patients are able to get their testing and antivirals, but it was a shambles the only time I went there about 6 years ago. No communication, no response to emails. Very disheartening.

 

[Marylib]

Hell, I even wrote him after the conference for clarification. Take a look:
View attachment 44608

It won't do any good to send it to him. If he or someone else paid for (and it does cost money) to present or attend a conference, and to record that conference, you need to send it to each member of the Board of Directors:
https://www.iacfsme.org/about-iacfs-me/ They are not hard to find. They are all employed somewhere or know each other.

 

[Martin aka paused||M.E.]

They are not hard to find. They are all employed somewhere or know each other.

I talked to someone from Ron's team about it and Ron is aware of it. So that is the good news.

I don't think that Bonilla has anything to offer scientifically so I just cut him out of my mind.
Just to keep in mind: Abilify wasn't his discovery. It was a patient's discovery! Like everything, we have until today.

Yes, I still support OMF. But most characters in the field are so very questionable that ME science in general is a mess. And that became very clear at the conference.

 

[Marylib]

That's good. I never heard much about the virtual Invest in ME Research Charity conference a few months ago. Not sure if anything presented there was still under embargo or not.

 

[leokitten]

It's not only ME. It's also depression, bipolar disorder, ADHD among others that involve the brain.

But I don’t believe it’s also these psychological disorders, because Martin if for most people with these disorders every available med worked for 3-4 months and then completely stopped working then this would be a huge thing and be more widely known. Most patients with these disorders would be without meds and in the same hopeless situation, but that’s not the case in these communities.

With these disorders what you see instead is the more expected outcomes where for a minority of patients some meds don’t work at all but they respond to combos of meds, and for the majority of patients there’s a slow build up of tolerance over a much longer period of time like years. To me ME is unique and what we are seeing is quite different.

 

[Martin aka paused||M.E.]

But I don’t believe it’s also these psychological disorders, because Martin if for most people with these disorders every available med worked for 3-4 months and then completely stopped working then this would be a huge thing and be more widely known. Most patients with these disorders would be without meds and in the same hopeless situation, but that’s not the case in these communities.

With these disorders what you see instead is the more expected outcomes where for a minority of patients some meds don’t work at all but they respond to combos of meds, and for the majority of patients there’s a slow build up of tolerance over a much longer period of time like years. To me ME is unique and what we are seeing is quite different.

True but if I look at Facebook it also seems to be a minority

 

[hmnr asg]

True but if I look at Facebook it also seems to be a minority

I 100% agree here with @leokitten. I have been on psych medication most of my life. They do fail, but at much longer time periods than abilify seems to be failing for cfs patients. And when they do fail its a very gradual degradation of their effects. For me abilify stopped working almost overnight. Definitely feels like a different underlying mechanism.

Are you speaking about facebook groups for schizophrenia? if thats the case then I supposed the people complaining are the minority who dont respond to this particular med. As @leokitten mentioned, for psych meds you either dont respond, or if you do, it will work for quite a while.

 

[Martin aka paused||M.E.]

For me abilify stopped working almost overnight. Definitely feels like a different underlying mechanism.

You're both right.

 

[leokitten]

As @leokitten mentioned, for psych meds you either dont respond, or if you do, it will work for quite a while.

And those who don’t respond to a particular monotherapy usually respond to combination therapy.

 

[leokitten]

Here’s a good review of the evidence base regarding depression, 40-60% respond to monotherapy and it’s implied parts of the text that monotherapy for responders generally works long term (1-2 years at least)

https://www.ncbi.nlm.nih.gov/books/NBK361016/

 

[leokitten]

I know we’ve discussed it here but bears repeating that the most likely underlying ME pathology that is dysfunctional and targeted by Abilify isn’t just dopamine, but dopamine AND serotonin and dysfunctional dopamine-serotonin interactions in the brain.

It’s likely that the cellular energy metabolic dysfunction found in ME is causing severe dopamine-serotonin dysfunction and Abilify can rebalance or partially correct it, at least temporarily, and possibly why it stops working in many with ME because it’s not targeting the root drivers but only part of the problem…

 

[leokitten]

Bumping this 2015 paper as seems relevant again…

https://forums.phoenixrising.me/threads/the-dopamine-imbalance-hypothesis-of-fatigue-in-multiple-sclerosis-and-other-neurological-disorders.37833/

 

[Boba]

I know we’ve discussed it here but bears repeating that the most likely underlying ME pathology that is dysfunctional and targeted by Abilify isn’t just dopamine, but dopamine AND serotonin and dysfunctional dopamine-serotonin interactions in the brain.

It’s likely that the cellular energy metabolic dysfunction found in ME is causing severe dopamine-serotonin dysfunction and Abilify can rebalance or partially correct it, at least temporarily, and possibly why it stops working in many with ME because it’s not targeting the root drivers but only part of the problem…

Absolutely agree.