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Funny you mention it as, just in the last 2 days, I’ve been trialing the brain cooling approach I read about for MS. Ices to cool the upper palate. Whenever I get foggy over the past 2 days I’ve used a block of ice in my mouth (when it’s big I have to move it a lot so it doesn’t actually freeze...

I would think so. But i’m a relatively recent onset and over the New Year someone asked me if I think i’m trending better or worse. I said that my attitude toward it changes what it looks like from the outside, which is true, but I implied no change. I simply forget what i’m like when it’s bad...

All great comments, want a stronger like button. Clarification on ‘trigger’: yes exertion is by far and away the main trigger. However, sometimes things are made worse by environmental factors rather than outright exertion. Eg having young rambucious (sp?) children come to stay gave me a small...

Yes. Yes but I can see it both ways. The trouble is less about use of judgement (which unfortunately is always going to be present in some form - patients included) but if more than one different person is using judgement on different subjects/patients. With any method, consistency is the most...

Wow Wow, I thought I was doing well reading to the blue part but there’s more! Sorry i won’t be able to read more before replying. 1) yes. It seems to just be talking about fatigue in general and too easily interpreted as normal healthy if unfit responses. Does not relate to my experience well...

It's a good story and I am impressed with the writer and his wife. I used to love stories like this in which people push the boundaries of what we expect vs what is possible. I love that he tells it as a young man who wants what they do want, not as some sort of positive thinking android. And...

I agree, there is a huge amount of overblown hype and it can be hard to sift through it all. I'm having an off-day. Not a crash but not great self-editing today so the following may need to be edited heavily in a few days when I feel better but here goes: Um, I think the problem is that there...

I don't know of any specific healthcare for ME/CFS. I'd love to be wrong on this, that's why I'm here, looking. [So although I am not in any way being treated for ME/CFS I did get simple things like melatonin to trial for sleep (I take only on specific nights when I know I'm crashing) and more...

I think the latter more than the former. But I live in a country where healthcare is generally affordable (free if declared low income). Having control over more of your life (where you live, noise, timing, stresses both social and physical etc). I note the threshold they mention is not wealth...

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...