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Apparently NICE guidelines get adopted in NI as a whole. (Pre NG206 we tried to have an exception for ME, but we were told it was not an option.) So yes NICE applies here.

I’m not involved. Maybe ask Joan McParland & Hope 4 ME & Fibro NI if they are involved

Still early days, but I have been taking this Xtend BCCA drink. It says to mix a scoop with “at least 250mls” of water - well that is disgustingly strong. :cautious: I’ve been mixing a scoop in 2 litres, and at that concentration I find it a refreshing drink. I’m not drinking 2 litres a day...

Ah good. I was just looking at the abstract.

So 1 in about 200 of the original sample risk getting Parkinsons 14 years later. (Rounding figure above to 800 of 160,000 is 1 in 200ish) They say there’s a 57% increase in risk for those who had hearing loss ( sounds very scary ) but actually that would mean those with hearing loss would be...

Now remember if you don’t win, it’s because you have the wrong mindset. Simple as that. You will only win if you do everything properly, and exactly as we told you. Your failure to win simply demonstrates that you don’t actually WANT to win, and that you are enjoying all the secondary...

The approach is as bizarre as recommending somebody do the lottery to improve their fortunes, “because some people win a lot of money”! Proponents can interview as many winners as they like, but it still doesn’t mean it’s a worthwhile investment, nor a good plan to increase any individual’s...

Ah. Okay not the variant I ordered. Let’s see how I go with the berry one.

@Mij Thanks for this update. I’ve been rather achey lately too, so I’ve ordered some of those Xtend electrolytes to try.

ME/CFS Research Insights or ME/CFS Research Skeptic I like these. I think the word “research” is better than “science” which seems lately to be getting over-used. (Headings that run “Scientists can’t believe. . .” etc have made scientists & science itself seem out of touch IMO).

I absolutely can’t help myself, and so fairly often I do more than I should. For a few days in a row I might think “Wheeeeheeeee look at meeee!” Then Bam! My body slams me back into my box! :bag: Thankfully now, I can take a week’s rest (and maybe also a month or two of feeling I can only run...

Definitely. I changed from being a ‘worsener’ to being more steady state. Why was I initially a ‘worsener’ (great word BTW) but now that I’m back to the functioning level I had in my first months of ME, am I no longer a ‘worsener’? Why did being in a ‘worsener’ state seem to make me...

I’m thinking there are 3 ME states linked to activity/exertion. 1. In the moment symptoms and associated fatiguability. These symptoms can be mild to severe, and once a pwME knows how to interpret their own set of symptoms, they can try to use them to pace activities. (Other tools like...

This exactly! And when I was at my illest only very minor symptoms triggered a big and longterm lowering of that threshold. @Jonathan Edwards Think of it as having to budget on a low income using a credit card, that if you overdrew at all, even just a tiny amount, you were are hit with high...

Yes! The threshold for WORSENING of the whole shebang is the problem. When at my worst, my disability ratchetted downwards with every attempt to try and do something. Symptoms in the moment, or even in the PEM stage afterwards, was not what stopped me doing stuff. It was the shocking lowering...

Good point @Yann04 I have more function now than I did, but also more general aches and grumbles. When I was more ill, I had to be SO cautious. I couldn’t risk any symptoms of this level, because the aftermath was days of increased symptoms, greatly reduced function, and often a further...

PS. I couldn’t answer the poll. I am still concerned about covid. I am careful, but I really can’t tick any of the boxes. You might say I should tick “Not at all” but that is not true either.

I no longer mask. I’m not convinced that simple masks are that protective (though they might somewhat reduce spread FROM an infected individual). The effective masks are just not user-friendly enough to use in real life situations. I’m not often out in crowded indoor spaces, and when I am...

For me the feeling of poison is something that’s all over. I’m not thinking of a gastric poisoning, but rather more like there’s something ick in the blood. It’s a fizzing or slight tingling sensation that could be like a mild electrical effect. I feel this almost all over my body, but most...

So back in the early and more severe stages of my ME life (2012 - 2016) I was very alcohol intolerant. I have always enjoyed red wine, but it started to make me feel “off” almost at once. A single glass set off an adrenaline-like response, but not in a pleasant way. I got restless...