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  1. leokitten

    Aripiprazole - Abilify

    From my experience the effect doesn’t lessen, it’s just stabilized, or plateaued, now. During this first 1 1/2 months since going to 0.5 mg, each week I got more and more ME symptom improvements, and now the level of improvements have stabilized so it might feel like it’s lessening but it’s just...
  2. leokitten

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

    The linked relevant papers are in the threads I’ve pointed to. Science does not currently have the technology to determine, in humans in vivo, the exact function of most drugs, particular psychogenic drugs that work predominantly in the brain. We don’t have the technology to directly look at...
  3. leokitten

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

    Some of the discussion here about side effects etc I think doesn't belong here then and maybe in the general Abilify thread? Because not directly discussing results of the paper. I surely wasn't in any of the last posts I made.
  4. leokitten

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

    Please look in the Abilify threads here and on PR and you will find plenty of linked scientific papers discussing this. I'm not talking about homeopathy, Abilify is a functionally selective, dopamine and serotonin system partial agonist (aka dopamine-serotonin system stabilizer). It acts on...
  5. leokitten

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

    Abilify is a special case, it’s a drug that pharmacologically works very differently at low doses than at higher doses, so no this does not hold.
  6. leokitten

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

    There is not one paper or other evidence in the scientific literature, I looked all over Pubmed for any research on very low dosage Abilify, because there isn’t (other than the Stanford paper). Has anyone seen anywhere on the PR, S4ME, or FB Abilify groups were pwME have had such serious side...
  7. leokitten

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

    Im not debating whether side effects occur or not. Where I ever stated that side effects won’t occur in any post?? Side effects occur in a subset of patients with almost every drug at almost every dosage. In fact with almost anything you swallow or put on your skin, pharmaceutical or not. It’s...
  8. leokitten

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

    From my understanding of this patient and their posts on PR, they had RLS before Abilify and they weren’t treating it or other meds they were taking weren’t helping or making it worse. Then they started Abilify for ME and were happy that it effectively treated the RLS. Now that the Abilify...
  9. leokitten

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

    I believe they are not, and conflating them together and their success or failure together is a construct invented by people. Abilify was trialed by pwME before Stanford was doing it, and there are likely hundreds like myself who don’t go to Stanford Clinic and are trialing it for ME on our own...
  10. leokitten

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

    I believe this is an misinterpretation of the facts. Yes people with depression have taken Abilify as an antidepressant add-on at dosages of 5-10 mg/day. They have not taken Abilify at dosages of 0.25-2 mg/day. There is not one single scientific paper or piece of evidence that describes the...
  11. leokitten

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

    From discussions with my ME doctor and other doctors or hearing about other practices from her, US ME doctors and clinics found the Stanford news on Abilify very intriguing, but are only cautiously trialing Abilify with specific patients if the patient request the trial and requirements are met...
  12. leokitten

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

    Actually there are plenty of pwME who’ve claimed that antivirals were the cause of their remission. Whether it truly was antivirals or simply time or placebo effect is debatable, but if it were placebo effect they might’ve never taken antivirals if it hadn’t been for a doctor at Stanford...
  13. leokitten

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

    What is a "reasonable" size? The RituxME trial was the largest so far with 151 ME patients, and I believe this would not be a large enough cohort to meet the statistical power necessary to show drug response efficacy if there are multiple unknown and confounding subsets with different...
  14. leokitten

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

    From my understanding and reading of the PR thread (which I'm actively part of), the info you bullet pointed are all from posts from a single Stanford Clinic patient, whom I actually know pretty well. I do completely agree with you if Bonilla is exhibiting this behavior across many patients...
  15. leokitten

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    WSJ - They Got Covid One Year Ago. They’re Still Sick.
  16. leokitten

    Aripiprazole - Abilify

    I just remembered I had a full urine OAT test too, from Genova Diagnostics in 2014 (over a year into having ME). Almost everything normal range, including neurotransmitters. A few energy production and detoxification metabolites were too low or too high, but in the end I thought what actionable...
  17. leokitten

    Aripiprazole - Abilify

    From my understanding urine metabolite testing of neurotransmitter levels does not give a reliable or accurate indication of brain neurotransmitter levels, because it indirectly measures whole-body neurotransmitter levels, and we know there are many tissues other than the brain which utilize the...
  18. leokitten

    Aripiprazole - Abilify

    Without doing a spinal tap and microdialysis of neurotransmitter metabolite levels, how are they doing this? Likely more just talk and educated guesses than real knowledge about what’s happening in their brains? A specialist doctor cannot usually even order a test to measure this.
  19. leokitten

    Aripiprazole - Abilify

    Yes, I believe I read too that doctors are not recommending quetiapine as a sleep aid anymore because of the fairly poor risk/benefit profile.
  20. leokitten

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    In my personal experience with ME, I find that the acceptance that ME is a real, debilitating, and physiological disorder from my family, work colleagues, doctors, researchers, etc, and legitimization of suffering is an important but all too little step. It helped me a lot during the first few...
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