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Thanks @Lucibee I was looking for more information. :thumbup:

Before this relapse I'd have agreed with you. I thought I had it all sussed. But now I'm struggling to get a handle on it. The last 6mths have been awful with being more or less stuck in bed at my worst. Last 6wks been better and more predictable and I thought I'd cracked and then the last 3...

I did query the researcher on that a bit but he's a computer scientist and I think is just taking the stated outputs of the headset at face value. My exact words to him were "I'm amazed they can get all that from two contact points", being an earlobe clip and a forehead electrode. I would...

A lot of the questioning revolved around how much trust I had in the sensor readings and it's accuracy. To which the responses were 'low' and 'don't know'. Couldn't really comment on accuracy as unless working at the extremes (meditating versus concentrating hard on a conversation) then it was...

Going to stick my head above the parapet here... I've participated in this trial. I've been using my Fitbit to help me with trying to keep my activity below the threshold that triggers PEM for a couple of years and was interested in whether the addition of another sensor could help with...

I've skimmed through, but he does at least have a comment from Perrin at the end which lays out his position on it (it's not a cure all and won't work for all with ME). He could do with putting it up front really! https://me-living.info/blog/f/feedback-from-dr-raymond-perrin

I started to look for links between ME and BCAA and quickly got mired down in lots of papers and articles. A topic to revisit when my wife is watching Strictly... So for now I'll just drop this here as I think it is relevant, if old...

I'd just like to echo the comments above, particularly Trish's. Thank you for your persistence and I'm very pleased that you are healthy and intend to continue your efforts. The whole experience is understandably personal for you and yet you seem to have maintained your objectivity. Not easy by...

Thanks for that @Hutan I've just joined.

@FMMM1 thanks. Between your post and Andy's I've got some homework for the coming week. :)

That's great, thanks @Andy! I'll have a look at some of that tomorrow. It's flabbergasting that there is currently so little coordination between so many organisations which have a common interest. However, it's good to hear that the CMRC have a new focus onto the biomedical. Hopefully that...

I meant the research funding organisations, but having thought about it I think what I really mean is the following, which may well highlight my complete lack of knowledge so be gentle with me! I assume that some of the charities raise funding for research, e.g. Investinme, MEAction, the ME...

@FMMM1 thanks. I was missing the step that the research proposals need to respond to calls from the EU. Influencing for the correct calls is therefore the first step. Actually that draws a sensible parallel to my previous (hopefully to be ongoing) professional life where we would be involved...

I wrote to my local MEPs earlier this year, using Evelein's template and some input from Francis and Espe. Only got a response from one unfortunately, James Glancy of the Brexit party ( which was unexpected). I emailed them all today to bring Evelien's presentation to the committee to their...

I circulated thr petition on the local Facebook me groups earlier this year. I think the complexity involved in signing it has put some people off, as has the Brexit situation. I agree that us in the UK should sign it asap, and have suggested that.

Sounds like a horrible and scary experience. Nice to hear that the consultant was supportive though.

:hug: Hope the two weeks don't pass too slowly.

For all the crap that happens to pwme in this country it's shocking to see how much worse it can be elsewhere. Heal well Mike. Your efforts are greatly appreciated.

This is going to sound mean, but I meant 'proper' celebrities! I did think of Martine. Actually I found a wiki list of celebs who apparently have CFS but it's quite US centric. The highest profile UK person in the list was Michael Crawford, although I've not found anything very current on him...

I also think that research into specific diseases benefits from high profile celebrity involvement, i.e. celebrity sufferers, or celebrities that fund raise due to a familial link. That makes it higher profile and perhaps encourages people to contribute. Are there any 'celebs' who've come out...