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If numbers were on the outer bounds of normal range, then I would tend to think that a trend (whether the number is moving in or out of the normal range over time) and any difference from the patient’s own norms where known would be more interesting than absolute numbers. ETA: But it’s all...

I do hope it’s been a damp week and the fire is a garden burn off with proper brick incinerator or a nice blaze inside a wood stove to dry out the house. If it’s full summer, I’m afraid we’d have to put it out in any other case. Especially in Australia! What were you thinking! ;)

Thank you for this. I recognise the experience much better in these questions. A couple of possible tweaks: I know that questionnaire methods all tend to use this sort of repeat the sentence with just one word changed format. I find it very hard to read on bad days. Perhaps if you can’t...

Could someone please direct me to an up to date summary of ampligen? (=Rintatolimod) I did google and find it on MEpedia but it looks like it was last updated in 2016?

Oh, and also from the same thread: Studies to test the effects of GET and exercise in general on pwME. I am aware that there are ethical considerations here but some more studies into the effects of exertion, and patient usable definitions of levels of exertion, over time (multiple days, or a...

I’d like to second one of @Alice’s suggestions here: Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018 About replicating trials of exercise physiology applied to people with ME/CFS, using heart monitors and other rest/‘exercise’ strategies we can implement at...

Yes I think so. I don’t think I have OI (as others on the forum describe it) but I do now (only figuring all this out over the past few months) find that lying down means I can carry on reading and even commenting on the forum far longer than I can when sitting or standing. That was an early...

On a personal note: ooo! Me me me me me! ... :/ always it’s research for other patient groups (oh, you’re not sick enough, young enough, living in Palmerston North already, unaware of the existence of ME/CFS...), now it’s me! But the other side of the world. Ah well. Will wait and see..

I agree with your idea I think but would approach I differently: I’d like all the literature reviewed and analysed for flaws in methodology, and more importantly, bungled analysis. I think there is a lot of literature out there which seeks to prove that something works (and fails but they try to...

I’d like a review of all research involving ME/CFS (or variants of the name) which breaks down results by diagnostic factors used and observed throughout the trial. Ideally complete with total numbers observed and stats for significance (retaining large effect size even in cases of small...

:woot::laugh::rofl::geek:

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...