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Small efforts are definitely worth doing. A signature on a letter or petition, a like on someone's post who is able to do some advocacy that encourages them to continue. They can add up to a big effort.

I'm going to wait until they put it all on line to watch in our own time without having to sign up to anything.

@dave30th

Advertising like this should not be published in peer reviewed journals.

Sigh. They might as well say there's an assocation between all or nothing behaviour and fatigue in professional sports people too. Have you ever watched a long tennis match, a marathon, a 200km cycling road race. Surprise surprise, the athletes are fatigued after competing, some so badly they...

Recruitment The study was open to recruitment between March 2014 and August 2015, I guess that explains the old NICE guideline used as reference for diagnostic criteria, but this is a misuse even of the 2007 NICE guideline which include other symptoms for diagnosis. I seem to remember Crawley...

Paediatric myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is defined as generalised fatigue, lasting at least three months, ‘causing disruption of daily life, persisting after routine tests and investigations have failed to identify an obvious underlying “cause”’.1 2 References...

Hence my suggested action. There's a summary timeline there and a draft letter.

Michiel Tack has already done that and it's published on the Cochrane website. In case anyone hasn't noticed, I've started a members only thread here about taking action.

My n=1 experience is of a 6 month post viral illness with full recovery where I was able to rest as much as I needed, and spent most of the 6 months in bed, and a separate onset 12 years later where I pushed to keep going and my illness became chronic and worsening. I'd say my daughter is...

My kids had theirs 'burned' off with dry ice by the practice nurse at the GP. That was decades ago. No idea whether they still do that.

What is RKI?

I think we need to be very careful not to present this topic as a criticism of our fellow sufferers. I would rather simply present people with opportunities to donate and fundraise as we do in the fundraising section on the forum, and as many do on social media and with their private circles of...

Nope, negative image for me. I'm physically allergic to horses and psychologically allergic to twee pictures!

Psychiatrists are doctors who can order biomedical tests and prescribe medications etc, so they should be able to diagnose and treat biochemical deficiencies like any other doctor. Psychologists are not medical doctors, so can't do the above, all they can do is talk to people, ie do talking...

I agree, @RedFox. That's why I think this test is only useful for us if we do the test sitting or lying in the same position and using the same computer set up each time. In other words, it's useful for one individual to observe their reaction times and compare with themself at other times, not...

I have just tested myself 8 times in quick succession, with just enough time to copy and paste the results here each time and refresh the test page. I was going to try 10 times but stopped after 8 as I could feel myself getting more and more cognitively exhausted.The final time I lay here...

I agree testing when used for ME/CFS needs to test for fade effect. I would call that cognitive fatigability rather than PEM, if the 2 minute test is done multiple times in quick succession on the same day. That could be an interesting study comparing with healthy controls.

Thanks for the reminder of this thread. I was intending to test myself regularly to see if there's a pattern, but I forgot. Just tested now; Average response time= 365 msec over 26 attempts. Your results show that your alertness may be suboptimal. Consider medical evaluation. After each time...

Indeed, you are very good at ferreting out the awful stuff still going on. Thank you.