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Sorry to offend you, @petrichor. As a new member, I thought you might be genuinely interested in knowing that other people's experience is a little different. I was in no way saying your symptoms were not awful or debilitating, not at all.

Nor me, @NelliePledge. I've been on a similar restriction (lost 6kgs since September), and the only benefit is that I no longer experience uncomfortable fullness and heaviness after my evening meal... I have pretty much no evening meal, actually... which I guess will fix that!

Well, with intelligence, you can at least measure performance on difficult cognitive tasks. I would call that objective (although other may disagree). But then there's all sort of other cans of worms mixed there... we would be here all day....

Nicely said, @Barry!

Good find, @arewenearlythereyet. Although if we want to use this scale in MECFS samples, it needs to be validated on that population. Controls just does not cut it.

Your symptoms are quite unusual, @petrichor. For most of us, our activity is not primarily limited by current feelings of fatigue, its limited by the flare-ups we get the next day if we overdo it. You have to predict exactly how much is enough - for that particular day - to avoid PEM.

Oh, this is really nasty stuff, @Kalliope. It starts off all innocent about "soothing and alternative therapies", but then gets quickly into what its really all about: Target groups include: - School nurse wondering how to help the children return to school stability and out of social isolation...

I don't think it was anything like that. Its not like my dinner consisted of lots of sugar (never dessert or sweets). I did have pasta when the family was having it, but the feeling wasn't specific to those evenings. And I never had any rush-then-crash or mood changes. Just a feeling of...

I also get this. The worst sensations would get me in the evening, after an evening meal. I would feel so full I couldn't get to sleep. Even when the actual food serving I'd had didn't seem exceptionally large. Since I've been on a weight reduction diet (since September), the problem has almost...

I'm no doctor, but I'd be playing down the CFS angle as much as possible. Noting that was your diagnosis prior to the discovery of RP. And that you're guessing your new diagnosis probably supersedes that. That's all completely true. And the less you say about CFS, the better you will be...

Perhaps its that I don't know enough yet, but I always get the feeling that the gut/microbiome is the NEXT BIG THING. And I feel sceptical about the scope of the claims being made. I had a look at some of the references in that article, and they seemed to be making strong claims on pretty...

Maybe we should start an S4ME picture library for the verbally challenged:

I tend to agree with @Andy. People like this should be called out on their bs. Politely and patiently, we should expose it for what it really is. Its not a good idea to allow a tweet like this to go unchallenged. People who don't know the field may think he's making a good point.

Yes. If we made it a "thing", then we could raise questions about the motives of a research groups who choose to select their own patient advisory group. Maybe its bigger than S4ME. Maybe it should include representatives from all patient groups (that could cause grief for those looking for an...

Thanks for posting, @Sly Saint. It has some good information, but also some that's incorrect/unjustified. It would be great if they could collaborate with someone from here that knows about psychological therapies. To really make all the arguments fully justified and watertight. Quite a few of...

What an absolutely fascinating idea! I love the idea of a group that are selected by the patients, rather than by the researchers to best suit their agenda. I wonder how we would go about doing such a thing?

I don't think I've explained what I mean by everyday memory very well. A lot of things that seem like memory failures are not actually failures of memory itself, they're failures in some other really sophisticated cognitive skill that operates on the memory. So for example, remembering you have...

Update: I've had a few weeks on which to observed myself on the ranitidine, and unfortunately, my conclusion is: no effect. My pattern is pretty variable from day to day, so it takes a while to get a good feel for whether there's been any overall change. bummer, eh? :(

Thanks, @Subtropical Island. What you say sort of complicates things, because if everything's uniformly bad, then we don't have any leads on what to test for. Maybe I should be asking what sorts of problems people don't generally experience. No, that's impossible to answer. Maybe I need to know...

I do think it can be good sometimes to have an objective other (not a friend or relation) to bounce ideas off when you're in distress. Sometimes its easier to think through problems in that situation and come up with positive solutions. Ideally, the person could also suggest some too. Plus...