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Some more recent Havana syndrome testimonials and interviews

Maybe the single connecting pathology between Havana and ME/CFS is balance and vestibular damage to the inner ear and/or cerebellum white matter. I’ve not talked about it here, but one very prominent ME symptom I have is that when I’m upright my brain and body seem to be constantly doing...

Even though they found no “smoking gun” they still believe from the evidence that something is wrong Politico: Pentagon still probing what caused ‘Havana Syndrome,’ even after spy agencies found no smoking gun Of course we can be almost certain the cause is different from ME/CFS, though it’s...

Does anyone know the functional consequence of the PDE10A SNP found in ME males?

Also, just asking out of interest, seems quite unorthodox to prescribe an antipsychotic alone like olanzapine for MDD? Some antipsychotics are approved to augment/use in addition to a standard antidepressant, like Abilify, though at a much lower dosage (5 mg) than for antipsychotic use.

Did the research compare brain atrophy rates to unmedicated controls with schizophrenia? Otherwise it would be hard to know if it was schizophrenia itself or antipsychotics that cause an increased atrophy rate over time compared to baseline age-related atrophy. Also I think all that research...

@SunnyK i found that low dose Abilify pushed my sleep cycle forward - made me tired much earlier and wake up much earlier. I believe most others reported this as well. My case of ME causes my sleep cycle to easily become inverted, where without sleep meds it can quickly go to sleeping during the...

Sorry if I missed you describing your experience somewhere, over these 18 months have you experienced any reduction in efficacy? Was it working extremely well for the first couple months and able to shut down most ME symptoms followed by slowly creeping back in over a period of months? For me...

Quite a few pwME that have taken Abilify found that the dosage required to produce significant benefits was different and required them to explore different dosages in order to find what worked best. For some people it was as high as 2 mg and for others it was a low as 0.25 mg.

@Hutan no direct evidence behind these educated guesses connecting its pharmacology to main ME symptoms… these are Abilify’s known primary targets, for which there are many papers showing where it binds and how it’s believed to function. It strongly binds to and stabilizes dopamine and serotonin...

I think all of us patients can strongly agree that some of the most central and debilitating symptoms are purely neurological - fatigue, inability to withstand much stimulation, cognitive dysfunction, unrefreshing sleep, autonomic dysfunction, tinnitus, ataxia, visual blurring, etc. At least...

Sorry I've been in a crash for the last week. I think in general these are all great ideas, I'll say though here what I said on PR: While I don’t think Abilify is a treatment for many, its astounding effects on some people, even those for whom it stopped working, really should give researchers...

I’m sure it’s been said here many times, but bears repeating that LC will hit the same roadblocks and walls regarding treatments and trials. Without any understanding, without knowledge of subsets or indeed even different diseases with similar symptoms, LC and ME drug trials are basically...

No idea on a trial, and given that this looks to only work in a subset, then as many have stated here and elsewhere until we figure out how to differentiate subsets then it’s likely any drug that would work in a subset will fail unless there is very careful and likely expensive trial design.

And I know this isn’t absolute proof that this isn’t placebo effect, but when I stop taking low dose Abilify it continues to work in the same way as before I stopped for weeks after. The first time, it continued to work for 2-3 weeks and my ME symptoms came back to full baseline in a...

I recently finished my second cycle on low dose Abilify. It worked pretty much the same as the first time, except for differences right at the beginning I described above, and the honeymoon period with basically zero ME symptoms was a bit shorter than the first time. But the period after that...

https://www.nature.com/articles/s41586-022-05128-8

Wired Magazine: The Secrets of Covid ‘Brain Fog’ Are Starting to Lift