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It’s all interesting. My initial onset had a period of viruses and failing but functioning health. Then a general anaesthetic triggered a dramatic drop. After that I had a year of ratcheting steeply downwards before I properly got the pacing concept, followed by a slower decline over another...

Funnily enough I said that in a “slightly” more long-winded way here: http://sallyjustme.blogspot.com/2017/02/get-out.html

@RDP This is very interesting to me, because of how my level of functioning switched from an average of 500-600 steps per day (3 year duration) to my current 4000 - 4500 average steps in a short space of time in early 2016. With a few minor waves up & down, I have maintained, but not been...

This! I really don’t react well to sugary foods. I also did some blood sugar testing a couple of years back and reckoned I was pre-diabetic. I have done a few spot blood sugar tests since starting keto/low carb, and the readings are now much better.

I’m still eating keto/low carb. Have been eating this way about 15 months now, have lost about 15lbs without feeling hungry (this was weight I had recently gained), and my weight has now been stable for the last 8 months, again without having to feel I am actively curtailing the amount I eat...

Do you mean “Quality of Life” etc on the labels? “Impact on Quality of Life” suggests ME has lowest impact of all the conditions. Fascinating graph though. Thanks

This looks like a really interesting lead. I hope more research follows!

Very useful thread Andy, thank you :)

@dave30th might also find this interesting. I think the wording on the page is ambiguous however.

How do they justify the assertion in the 1st sentence?

This!

Fair point. Unfortunately improvements in the placebo group are often all attributed to “the placebo effect” without any other acknowledgement of what can cause a placebo group to improve (or appear to improve)!

The “placebo effect” can also be nothing to do with expectations, but can show up because of the chance that some individuals out of both groups will make a spontaneous improvement. Ie Regression to the mean.

Ah! Nothing new then. LOL

I feel we need a new word here: psycho-semantics. There is so much word play going on. :(

Thank you - much appreciated :)

Can somebody point me to the editor’s note on the original LP paper in the Archives of Disease in Childhood, please. Thanks.

I’m here too & reading & taking note. ;) @saranbonser is also on S4ME

Saran, good to see you here. As fellow lay member on the GDG, I am delighted to be working with you over the next months to ensure that patient perspectives are heard. I am confident that you will bring a strong voice for young people to the group. Xx

Lol! No worries. Thanks