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I'm sorry to hear you haven't noticed positive effect. I am still doing well. Bouncing back from PEM quicky, about a 5% increase in my baseline energy envelop and starting to see flashes of my personality come back. Now I am on 0.5mg in the morning and 0.25mg at lunch. Neuro would like me...

@leokitten Thankyou for explaining symptomatic tx vs disease modifying. I really appreciate it. I was worried that symptomatic tx could mean masking PEM but know I understand you mean it targets downstream problems - so it could actually help PEM. This does seem to be what is happening with...

I wonder if it is because it has built up in their system and so is no longer a microdose? AKA could it start having an agonistic effect on dopamine like it is intended to do at therapeutic doses for psychiatric illness? (I am not 100% clear if it is antagonistic or agonistic at microdoses...

We compounded it ourselves from 5mg tablets. My friend is about to try it and is getting it professionally compounded at the chemist. Our neuro tho said that my caretaker seemed capable as he makes me capsules all the time. It obviously not going to be perfect but since the dose is so tiny it...

I starting microdosing Abilify a week ago and holy shit - it works! I absolutely can not believe how good I am feeling. For context I have severe ME, in bed 22hrs a day (otherwise on couch), need a powerchair to get from bed to toilet and carers for hygiene tasks. I have a history of medication...

Wondering if PEM itself contributes to POTS. I remember reading Prof Neil McGregor's studies showing PEM involves a hypermetabolic state where we urinate out metabolites. Does anyone know if this contributes to orthostatic intolerance / lowered blood volume?

Why did they make a new one, did something go awry in the original one?

You can get packets of roasted chickpeas which are good. They are also salty so good for POTS. I don't know what country you are in, but there are commercial protein bars that don't have nuts. And also just BCAA capsules.

Yes, I got high anion gap metabolic acidosis and was admitted for 3 days with it.

Can mice have IDO2 mutations? If so, why not elevate their tryptophan levels and see if they become ill.

From the study: The way they have defined it is confusing. Postural = pertaining to position Orthostatic = being upright If someone is symptomatic whilst lying down - that is not 'orthostatic'. Persistent OI doesn't make sense. Shouldn't it be called postural intolerance? This would...

Why would dizziness be caused by tachycardia? From what I understand the tachycardia is compensatory for inadequate blood flow to the head, which allows for the person to be normotensive. If you take away the tachycardia then they would become hypotensive. Also, is there even a way to reduce...

I think it is important to put pts in a position where their legs are above the heart, not just supine. I often have OI symptoms which are relieved by elevating the legs.

Why is calling it an invisible disease bad PR?

Evidenced based management advice I wish a doctor could advise me on: NB: I am a moderate pt and have no medical education, please let me know if some of these ideas are silly. - Orthostatic stress: How to position bed? Inclined for some orthostatic stress or elevate legs to minimize...