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Maybe I'm misreading/misunderstanding. I can suffer from both immediate and delayed onset PEM depending on whether I am in a good phase of bad phase of the illness. Also delayed onset is variable for me. I'm not really sure of all the factors that cause it to vary but if for example I both...

Enviromental factors: heat, sensory stimulation (noise, lots of fast moving visual info such as travelling in a car) are also common triggers. In my own case environmental factors are far more likely to trigger PEM than emotional one, but that may not be true for others.

I reckon there are two reasons: 1. Unless it affects them, or someone close to them, they have no interest. For Douglas Adams fans this would be the equivalent to enclosing it in an SEP field. 2. They see the problem quite clearly. However, it is in their own best interests to ignore the...

. Ah yes, but not when treatments are for the mentally ill. That's different .... Nobody seems to give a damn. Eta which is why they are trying to push more patients into this category while wringing their hands and pretending that they aren't responsible for stigmatizing the mentally ill...

Yep. Me too. I used to exercise regularly, it was a great way of destressing from my job. If I stopped for a few weeks and had to restart it was very hard to get back in to it, stiff, achy muscles but it was NOTHING like PEM. PEM is like nothing I experienced before I became ill. In fact...

I have read it differently. The guidelines /recommendations are issued by And the Research Committee acknowledge a lack of trained physicians. The JMEA are saying that the guidelines aren't good enough and that

What a disgusting human being.

I hope you're right @Adrian .... I'm not sure lack of evidence will stop 'em if they think they can get away with it. We will need to watch for slyly crafted language that is open to interpretation ....

This is what worries me about the NICE guideline review. It could so easily go the wrong way.....

Maybe I'm being pedantic here but maybe supposed to take effect is not the same as you will feel the effect yet? Unless it's causing problems it might be worth carrying on with it for another 2 or 3 days.

The term duty of care springs to mind....or doesn't that apply to physios? Or does it just not apply to researchers the PACE trial? Or both?I At the very least you'd expect a referral to be seen by a doctor before continuing!

I've not read the whole thing yet but this jumped out: from the downloaded document othersideofvenus said: If you don't ask questions designed to pick up PEM, you won't find PEM.

This is my experience too. At least some of the memories are clearly there for me as they do come back. But at the time I need 'em I'm either desperately searching a blank space in my mind, or I'm not aware they are missing at all.

I know of one case where someone had the local authority come into their home and remove all the aids that she had previously been assessed as needing. Why? They were suddenly advised that the use of aids was not advised for people with ME. By providing aids they were contributing to her...

I had a relative in hospital and she was passed from the original OT (really helpful and understanding ) to a different OT (who wasn't really interested at all) on discharge from hospital.

Yep, but will be unspecified in the stats.

A very good one. I read an article in a magazine about a guy who had breast cancer. How the assumptions made about all people with breast cancer being women affected him and his treatment. I read it in a magazine in a waiting room some where and it really stuck with me in a " Wow! Never...

I didn't specify (cause I'm an awkward cuss) but I can confirm I am female so: Male: 179 Female: 332 Unspecified: 139 I daresay that doesn't really help tho' !

That would be the it's not what you know, it's who you know system.

Yes it would but I suspect that is why the BPSers have been so very deliberately slippery with terminology. To make their brand of treatment more acceptable. I also suspect that is partly down to the very good intentions of some therapists at some CFS clinics. They deliver the appropriate...