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Makes a lot of sense, and this intense carb hunger as a crash nears is worse in the evening and it’s accompanied by that ME super wired feeling, so it really could be adrenaline. I think there is endocrine dysfunction going on at least in some of of us and it does contribute to symptoms and...

Just wondering, but during these times have you accurately measured your blood glucose to confirm what you were experiencing was actually hypoglycemia? (not just feeling symptoms that correlate) I never had this phenomenon and symptom, but have had a similar one that other pwME also report...

I know this is speculative, but Abilify has definite known effects on endocrine function due to its binding on to dopamine and serotonin receptors in the hypothalamus, so maybe a possible mechanism as to why it seems to work very well in a subset of ME.

Would be interesting to try plaquenil, thanks for mentioning it.

I think I wrote before here, but I used to have way more typical ME chronic immune activation/flu-like symptoms and also temperature regulation issues, like wild changes in temp, suddenly freezing cold nose, lower legs and feet, constantly going to the thermostat because felt like apartment temp...

I haven’t tried it. Did you and did you respond to it?

Still same benefits since leveling off, take a bit more like 0.6-0.65 mg/day since a long while. 4 1/2 months on treatment

I think since then not only discovery of the role of tau protein plus I believe very importantly the role of blood brain barrier damage/breakdown and insulin resistance and diabetes in the pathogenesis and progression of Alzheimer’s. BBB damage and leakage from diet, high blood pressure...

Consequence 3: Doctors in the USA getting pressure from families to prescribe it off-label for loved ones with more advanced Alzheimer’s (for which it’s not indicated, only early MCI stage) because this is such a devastating disorder, burdening patient families and insurance companies with huge...

Also the fact that once you become overweight or obese for long enough your body considers it the new set point and fights you to stay there, and even worse if you lose weight your metabolism is slower than what it was when you were originally at that lower weight, i.e. the “Biggest Loser” show...

Big Pharma will always try for the easy fix because there’s so much money to be made A potential 'game changer' drug for weight loss and obesity was just approved by the FDA

The results of this paper didn’t show any real differences between CFS and controls, so either the kynurenine hypothesis is wrong or it’s only a problem in certain cell types that they didn’t look at in this paper.

Yep... exactly what I thought after reading it thank you!

Very true, but I just don’t think we are going to overhaul the clinical trial and regulatory approval system on top of trying to find a treatment for ME. This is a tremendous problem in medicine and partly because the incentives are all screwed up (at least in the US). We already have so many...

Or statins for preventing major cardiovascular events. It could be that ok the drugs aren’t bad it’s that people taking them think ok now I don’t have to change my lifestyle one bit and all is well. All is not well no drug is magic.

A meta-analysis review worth reading, giving pause to how truly (in)effective many common FDA approved are compared to placebo. How effective are common medications: a perspective based on meta-analyses of major drugs. Leucht et al. BMC Medicine (2015) Abstract The vastness of clinical data...

Isn’t it true for most (if not close to all) FDA approved drugs, that during their successful phase III trials that were key to their regulatory approval, there was almost always a significant subset of patients for whom the treatment didn’t have good efficacy if at all, and this is actually...

If you went up in dosage I would expect it to cause sleep difficulties again until it normalizes?

Going back to Abilify and potential pathphysiological mechantistic clues… Here’s a question, let suppose that the theory that the core pathology of ME causes dopamine and serotonin system dysfunction and this dysfunction then is the direct cause of many important ME symptoms such as PEM...

I've been trying to tell Janet Dafoe and Ron via PR about brilaroxazine. To me so far in phase 1 and 2 clinical trials and other published clinical studies it looks to be exactly that, Abilify without metabolic and endocrine side effects. The incidence of these side effects with Abilify is...