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Wasn't there a study a few years back that actually tested if ME patients puts as much effort into trial/tasks as healthy controls. They seemed to show that ME patients really were applying themselves and not faking. I think it was an Australian study. Anyone remember? Eta - had a quick look...

I agree with much of what you say @arewenearlythereyet but: NICE was set up to provide guidelines/ a protective framework and it's not worked out so well for us. As I see it, sometimes doctors want to help, but the system actually prevents them. One example is sleep meds - even when people...

And yet when it suits doesn't Crawley claim that ME/CFS is different in kids? Or am I confused?

Could they be saying that boys of that age are typically more active than girls - play more vigorous sports etc.

That wasn't my experience while assessments were done in-house. They wanted me to go to an assessment centre that was a total nightmare to get to. There was a closer centre, but I wasnt allowed go there because it wasn't my area. I spoke to the doc and the feeling was I should ask for a home...

Interesting thought. Personally, I would be reluctant to be treated by staff who previously pushed on with treatments when they were clearly making patients sicker. Especially, when those patients have the same condition as me. Setting aside the whole ME / BPS situation, there is another...

That's it @Jan . We need new vocabulary.

Yes - but only when my thyroid meds need to be adjusted/increased or when I'm anaemic. Completely different feeling, I think. ETA - as far as I know I would be excluded from the Oxford criteria due to neuro symptoms

I know people with mild(er) ME and they happily describe themselves as fatigued. In fact one person became quite verbally aggressive towards me when I explained that I didn't consider fatigue to be a primary symptom in my own case. In her opinion it was no wonder the disease wasn't taken...

A question: Do any of the women on here notice any difference in HR between the first and secind half of their cycle? In particular, raised resting rate and raised average readings. I think I'm noticing a pattern but it could be a fluke. Also, I'm using hormone medication that might be...

And I would go further and say that such clinics are very unlikely while the NICE guidelines stand. "Good" is a matter of opinion. The CFS clinics which aren't too bad seem to reflect the opinions of the lead clinician. They are responsible and answerable should anyone query their approach...

Sure. I absolutely appreciate that. However, the road to hell is paved with good intentions and I would hate to see her campaign for clinics to be opened in Scotland that run on the current NICE guidelines, simply because she didn't understand or realize this in time.

. The contents of these files are now known thanks to the efforts of Valerie Elliott Smith, I believe: https://valerieeliotsmith.com/category/the-secret-files/

I think her desire to help is absolutely genuine. I think that it's just that there may be a misconception about the CFS clinics in England. It may be that they are seen as a place where ou mignt get symptomatic relief and may access to supportive OTs. However, even the most benign and...

I'm sorry if this seems a bit negative. I'm very grateful to her and all those who've given time and precious energy to help her, but to be honest, if she doesn't understand this, there's a real danger she could do more harm than good. Damning PACE and then asking for clinics like the ones run...

@Inara The Medical Research Council is a publicly funded government agency responsible for co-ordinating and funding medical research in the United Kingdom. Wiki definition.

We could crowd fund you!

You'd nearly think the devious so-and-so's planned it! :cautious: Eta - just thought I'd better add I am actually joking.

This is what I'm trying to figure out. They must know this makes them look utterly incompetent. They must know it will be discussed online. There may be other nuggets of dodgy dealing with the PACE trial, but I can't see that it would be so bad, compared to everything else to warrant this...

:rofl::rofl::rofl::rofl: Brilliant! Henceforth let him be known as Shrodinger's professor!