Responding to questions about Abilify
May 21, 2021
This week there have been lots of questions and discussion on our Twitter feed about a medication called Aripiprazole, more commonly sold as Abilify.
Anecdotally, some people with M.E. have found that this medication relieves their symptoms (others report no change, or a worsening of symptoms). We have been following the comments and questions, which include:
- It’s a hugely powerful drug and obviously needs careful monitoring. Any guidance on this?
- The shame is that I’ve only heard about it from my contacts on here. None of the charities seem to be promoting it. I’m building up my knowledge so I can try to persuade my GP, but it’s hard to find reliable info.
- This drug is showing potential promise so we need an urgent clinical trial. How do we make this happen? Will you work together to fund it? How much do we need to raise to make it happen? We can't just sit on this.
We work with our Medical Advisors to ensure their clinical experience and scientific expertise are reflected in the information and resources we share with people with M.E. but as a charity we do not give medical advice, or recommend any individual treatments or management approaches. Instead we share key information to support informed decision-making.
In March, M.E. blogger Cort Johnson posted about Aripiprazole, summarising a small study that looked at the efficacy of in improving the symptoms of M.E. He said:
"Abilify is a 'dopamine stabilizer.' When use correctly it tends to stabilize dopamine levels at more optimum levels. In the higher doses used to treat schizophrenia and other disorders Abilify reduces dopamine production. At the lower doses used in ME/CFS, though, it enhances dopamine production [...] Several ME/CFS and fibromyalgia studies suggest that low dopamine levels may be causing fatigue, pain and other symptoms. This retrospective Stanford study analyzed the symptoms of 101 patients before and after using a low dose of Abilify. About 25 percent of patients did not respond but the 75% who did reported they experienced less fatigue, brain fog and PEM and better sleep. Side effects were minimal. Since the trial was not placebo-controlled we can’t tell how effective Abilify really is in ME/CFS but the results were promising and will hopefully provide the basis for a more rigorous trial."
Dr Charles Shepherd, Medical Advisor at the ME Association, has also posted on their Facebook page this week about how this drug works, and its potential side effects.
The US ME/CFS Clinician Coalition, formed in 2018, recently published its treatment recommendations regarding drugs and non-drug approaches which, as Cort explains in a further blog post, "can be used to explore the different treatment options, check dosages and as an educational resource to give to one’s doctor [...] Note that because this document was developed by a Coalition, it’s inherently quite conservative; ie. it provides treatments that the entire Coalition could agree on. That probably cuts some treatments out. It’s no surprise, really, that Abilify didn’t make the cut – it’s just too new to the field."
Some doctors in the US are prescribing Aripiprazole, but it is not licensed for use in the UK. It's very important to reiterate that Aripiprazole has not been sufficiently tested in robust, large, clinical trials to know if it's effective in relieving the symptoms of M.E. – you can read more about why clinical trials are essential on our medications page (scroll to the last section).
A trial to test Aripiprazole would need significant investment, and it’s not something Action for M.E. has the funds or expertise to take forward alone. We are always willing to work in partnership with others to achieve shared goals and would be willing to consider an approach from an organisation wanting to take forward a clinical trial for this or any other medication that potentially shows promise for people with M.E. At the moment, we are focused on delivering the two projects we receive funding for – DecodeME and the ME/CFS Priority Setting Partnership – and our Action for M.E. funded projects – two PhDs and a Fellowship – alongside working with the UK CFS/ME Research Collaborative and other partners.
