Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

There are tests for POTS to determine whether a patient responds to a medication. They can be properly monitored.

What tests were done for pwME taking Abilify? What is ME? It's a shot in the dark.

 

There are several medications that can improve POTS symptoms and are supported by small prospective studies or retrospective case series. The patient can be SAFELY monitored.

From the OP original link:
Results: Of the 101 patients taking aripiprazole, 75/101 (74%) experienced an improvement in one or more categories: fatigue, brain fog, unrefreshing sleep, and frequency of post-exertional malaise (PEM) episodes, or “crashes.” Twelve individuals (12%) had no observable difference in symptoms at the maximum dose of 2 mg, and 14 individuals (14%) reported worsening of symptoms or onset of side effects that led to discontinuation of the drug (Fig. 1).

There is not biomarker for PEM. They are referring to PEM and fatigue interchangeably to treat fatigue.

Where is the evidence that pwME have a 'neuroinflammatory condition'?

 

A year ago I showed a psychiatrist a list of the various studies being done on ME (with very short 3 line summaries). He flipped through the pages and said: Holy smokes, they are all over the place. They just don't know what is going on.

I think that it might be useful for Stanford, if they are going to do more Abilify studies, to bring on board some psychiatrists who have experience with this drug.

In our experience, various drugs helped very briefly: hydrocortisone, fludrocortisone, midodrine, HGH, oestrogen, and many others, but nothing lasted. Mestinon was awful and not tolerated. Everything just brought massive side effects and whatever little temporary gain there was petered out. ( The CFS/ME doctors in the usa have lots of experience trialing these drugs on patients who are so desperate and who are suffering abominably.) But in our case the disease just marched forward like Charlemagne's army.

 

Might just be placebo wearing off as well? Unless tolerance is common with abilify in general

 

Correct—I agree. Which is why I was put-off by the somewhat overly-critical sentiment coming from this thread about a med originally developed for psychiatric conditions that might be repurposed for MECFS. Fine to criticize the shortcomings of the published study. But not fine to criticize the concept that Abilify might be useful in treating the symptoms of MECFS. If you think the study is flawed then you can’t make any conclusions one way or another. That means you can’t conclude that it has a very low likelihood of helping patients.

MECFS is a horrible disease that leaves many people bedbound in dark rooms. If you’ve already made up your mind that the many people who have dramatically responded to Abilify are placebo effects and conclude that there is no reason to proceed with further studies, then you may not be helping the pwmecfs.

 

yes it is—like here for example.

https://www.depressionforums.org/fo...t-stopped-working-or-do-i-need-a-higher-dose/

 

I was thinking more of scientific studies, but im too crashed from writing today to look it up myself haha

 

Pardon me for interfering, but I did not get that impression from Trish at all. They are just discussing the cons of the retrospective study, which is great - thats the point of this site no?

 

Going back to Abilify and this paper, have we ever seen any other treatments have such a positive effect on so many very severe and severe pwME?

I know that very severe or severe pwME are not totally immune to placebo effect, just wondering when you are so very sick every second of the day if it would be harder to mount a placebo effect.

Did RituxME have significant numbers of very severe and severe ME cases? Were there placebo effect differences depending on ME severity level?

 

They didnt look at very severe. I think in cyclo they looked at severe, but they did not have much effect I think. I think the other intervention were one have seen very severe report huge improvement is Lightning Process, hence why skepticism is warranted always for retrospective studies, although the method there explicitly involves lying about your symptoms

Edit: to answer your question, no i dont think many interventions have. And thats what made me interested initially.

 

If a RCT trial demonstrates a 30 or 50% decrease in fatigue for Abilify that would be huge and would almost certainly earn Abilify a prescribable (sp) indication for MECFS. And would be fantastic for patients!

So my opinion is that this should be among the highest priority areas of research because it is a low hanging fruit. But duration of response also needs to be looked at in addition level of response.

 

To clarify—comment wasn’t directed at Trish—sorry for any confusion.

 

As long as they design the damn RCT properly! Not like the OSU6162 RCT where they gave the drug for only 2 weeks!

Let’s get the trial dosages right, the treatment time course right, and physical and cognitive endpoints right! I think we pwME collectively sigh and shake our heads as much or more than any other illness community when reviewing research on our disease.

 

I agree wholeheartedly with this, the BPS folks give the rest of psychiatry a bad name, because at least here in the US psychiatry believes and there’s an ever increasing mountain of evidence to show that psychiatric disorders have a neurobiological basis. There is also a very fuzzy line between neurological and psychiatric disorders/diseases. So much overlapping pathophysiology and symptomatology.

 

Maybe I missed something in the paper, but I don’t think it was cherry picking but that they were missing data for some cases.

I would agree with you here IF it could be said that the retrospective analysis endpoints were robust. They weren’t in my mind which really makes it hard to judge the findings, meaning it could’ve been worse or better had they used more robust measures.

 

Yes, cherry-picking is mostly not deliberate. Cherries often pick themselves. The manky ones have already dropped off the tree. The underripe ones refuse to be picked. It's cherry picking.