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This article is written so strangely, carelessly - it's insulting from it's core. It's one of those articles, where even if it was true it would be insulting to post a picture of a ill person with an apple-chasing device on his head. Are patients too ignorant to see what's going on? There is...

Didn't fluge and mella target t-cells with mixed results? I never followed that line of research closely.

I'm wondering if anyone else on s4me is having tendon issues in the arms/elbows. I use the computer, but to be honest it's a modest amount. I had a work-up for auto-immune conditions but they were all negative with no antibodies to the connective tissue orders, only a very slightly positive ana...

Anyone know how did abilify + celebrex pan out, iirc ppl were saying that might avoid tolerance?

I can see that, yes it's interesting how it is similarish to what some are finding as they trial the drug now. It's too bad neither continued to post as they might have been able to provide a long-term experience to reflect on abilify.

I understand, there's also the potential benefits of taking a 4 month break from the illness. It can give people a chance to get to the store, move if they have been putting it off, but also condition a little bit, get the blood flowing. Were you able to find if people who developed tolerance...

Are you concerned at all about what will happen when Abilify no longer provides benefits, be that 4 months from when you started or some other date? Or are you happy to just take what you can for now?

Hmm. I don't think that's quite true, as if the nanoneedle is positive for most similar disease it won't help narrow down the branches. A non-specific test, broadly positive, unrelated to a clear, biological mechanism will serve little use and may not even help patient justify their sickness for...

Ah, @Peter Trewhitt yes I had this exactly. When I lived in a city, there were times I would get confused in the small area outside my university. Places I had been for years. I had a terrible time consistently mapping out the city in my head. Yes to the sense of direction as well. It can be...

Another occurs to me though it's not a symptom. I have read many ppl with me/cfs say they have a marginal positive ana w/ speckled pattern. I have this sometimes and sometimes in normal. I don't know if that's significant or not.

(a) Yes - as I never get tired of explaining that I don't work full time and the follow up, what do you do all day!?!? I know this is also the case for me. (b) I also get hoarse, although mostly when I talk for more than 15 or so minutes. I don't know if this is me/cfs or not. I developed...

Are there any trials on PEM w/ heart variability, hr, blood pressure etc... just the bare fundamentals? Or possible more specific metrics? Edit: I've looked through a bunch of papers but almost all are tested during or immediately after the stress test and the test isn't really designed to...

That isn't to say things that can be stimulating shouldn't be studied. It just seems daunting. I have been taken reading some of the comments on Abilify. It's not something I've read with regularity and acknowledging the severe limitations of anecdotes coupled with publicity, a single clinic etc...

This is something I've been wondering about. Initially with old SSRI trials for various "functional" conditions, but also with Mestinon for me/cfs. The concern is it goes beyond subjective outcomes and into things like steps walked. I found Mestinon modestly stimulating. Not a stimulant...

IMO, the only thing you can say about this paper is Abilify may require a proper trial. It is not a paper that can be used to say Abilify treats me/cfs for reasons Trish and Hutan mentioned. I'm not impressed when authors use improvement in any side effect with self-reported outcomes. I'm a sap...

Also per a @wigglethemouse tweet, they funded a Stanford James Lab' Study in early January on brain and whole body inflammation around $100k. (I don't know if this in addition the neuroimaging study James Lab tweeted about last summer, which sounded completed but hasn't been published).

Huh, that's like a $2M increase in one year. Guess they were really busy last year? Which is strange because you think they wouldn't have seen a lot of patients.

Yeah, maybe, but it's such a scary idea because with that the argument that follows is anything or any problem you have with me/cfs you're doing to yourself with irrational beliefs.

I was under the impression in the U.S. (obviously some states will have specifics), that if you weren't a danger to yourself or others, you couldn't be held in the long term. Perhaps I'm totally wrong about that.

The difference is what the person does with his/her anecdotal experience, the reach of that anecdote and the framing of it.