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

The clinicians at Stanford could have done a decent study for not much more than it cost them to do the useless study that they published. They had patients willing to try Abilify, patients presumably with insurance to pay for the drugs and the clinician time to screen and prescribe - surely they could have just enrolled those patients in a cross-over study with a placebo treatment.

So, let's do them elsewhere. We have a global community willing to help. I'm sure that a trial of Abilify could be organised in Australia for 10% of the figure Ron has suggested, probably considerably less. It doesn't need to be a big trial to be convincing and justify more research, it just needs to be well-done. Researchers might surprised at what could be achieved if they started working more closely with patients.

 

I actually think the paper was worse than useless, because it muddied the waters. It didn't move us closer to understanding if Abilify can help patients. Just like the PACE trial, it combines a lack of blinding with subjective outcomes. If I, a person with ME/CFS who really wants a useful treatment, can write off such a study as providing no evidence that Abilify works, it's certainly too easy for people in the NIH who don't believe ME/CFS is worth researching to do the same.

They don't need to jump to such a large and expensive trial. What I've been trying to say is that clinicians could incorporate useful studies into their normal care of patients. Having got patient approval, the patient could enter into a double blinded crossover study. So, 2 months on the treatment or a placebo, then 2 weeks wash out, and 2 months on the placebo or the treatment - or something like that.

I understand I'm a long way away and don't know a lot. But why wouldn't that work? What are the hurdles preventing it? People could still tweak the dosage during the treatment period if they wanted to.

I'm sure most patients would be fine with a trial structure like that as it gives them a better idea as to whether the treatment actually helps them personally.