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Perhaps I should have been clearer. What you and describe is what I call a crash. But, although I fit the criteria and I know that this thing is real, I don't know that what is happening doesn't have a simpler explanation, or parts of it. So I really really mean it when I said that I'd like to...

Nope, I worked it out and I'm now fairly stable at 30% of normal daily pre-illness function with careful pacing (down to 10% if I overdo it by 30% - ie if I do 40% of a pre-illness day). I was very active and capable by anyone's standards pre-illness so this means I am not severe by absolute...

"CFS is purely a symptomatic condition." ... I read this early this morning and mulled it over a lot. As someone who has no ideas about any of this the letter reads as someone trying to be balanced and reasonable. But then there's this sentence. What you're telling me, whoever wrote this, is...

Definite, delayed, PEM. It's what you can't ignore no matter how much you want to or have grit or whatever. Forget and act like a normal person on a lazy Sunday and, not right away but the next day, you're a gibbering wreck like you've been dunked in ice water charged with electric shocks and...

Personally: when first ill I didn't sleep more than 3-4hrs a night. Obviously also not refreshing. Now (having created a life that requires little of me in order to pace effectively) I have no more trouble with sleep, using good sleep hygiene etc, than I would when well. Except when having a...

(Mods please move if there is a better place for this question) Given that in the IOM diagnostic unrefreshing sleep must be present (correct me if I misinterpret) for a diagnosis of ME/CFS, if that one criterion is under control (no longer present/significantly true) does that mean the patient...

I've discovered (I had a very sheltered childhood in which everyone genuinely wanted to understand things) that there are a lot of people who just want something to back up their chosen belief or statement (common throughout all time) without any interest in learning more (oh) but that now there...

Sounds like useful feedback for the research group - is it worth sending them a short email to tell them? :) I remember finding statistical methods to be a frustrating add on at the end of an experiment as a student because I wasn't comfortable with the stats involved (statistics is not taught...

Thanks for this. It does describe my experience very well (although my diet has never needed much of a fix apart from more absolute preservative avoidance) but I would have said the same about my temperature until I started measuring it. I get so cold I can't warm at all and crash into...

(That's why I'm here: I used to be able to read and interpret such data and synthesise ideas (ie from multiple sources and studies) to see the big picture and the new directions for investigation (including exactly what we need to prove and how). Now I often struggle with words and get tangled...

It's worth making a distinction between the researchers and the articles. Research in a grad student setting is all about getting funding and, this is the important bit for us here, setting promising students on a path to a given field. I'm sad that the headlines are impacting on Australian...

Let me know if you get any info on this when you have it checked?

I think a useful exercise for all those embarking on an experiment is to list all your assumptions before you start. Then give that list to someone who is very good at experimental method and get them to check what you missed. [Invariably you find something you need to fix in your experimental...

I am usually cold since ME/CFS. Extra cold when sicker. (ETA: for example I wear 5-6 wool layers, a hat and a wind proof on a bright summer day when out and about with people wearing t-shirts and shorts). I had a course (ironically first aid) this year and we were testing thermometers and, after...

Large volumes of hot/warm drinks speed the gut. So I guess you could use that to advantage if that's the problem. I find not eating helps slow things down but obviously not sustainable. And it doesn't fix the fever etc. Rest is the only real 'solution' for me.

Yes but diarrhoea more often than constipation. ETA Not just mild but full blown, gastroenteritis symptoms

Seems far too precise to be 'the answer'. I guess it's just an attention grabber. But I am curious as I've not yet read enough to have heard about calcium channels in this context. I had hypercalcemia (blood) in my 30s which lead to discovery of a grossly enlarged parathyroid gland and a...

This might be too simple a question (in too many words), please, complier, feel free to skip or critically edit: What would be your advice to someone who fits the criteria for mild/moderate ME/CFS, is still in the first couple years, but has not identified any significant abnormalities in...

Peer review is like the quote from Churchill on democracy: It has been said that democracy is the worst form of government except all the others that have been tried. Peer review is a check and balance, one of many, not a panacea. I agree, we need to value peer reviewers, we need to find ways...

As a student I took Bliss (developed by a local university at the time though I think it's been sold to a company now - not sure how budgeting might have affected its efficacy) to reduce sore throats. Worked really well. But funnily enough I still sometimes got a cold (achy, sniffly), just...