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I was a tween (11), my mum was an adult, our pem was exactly the same. The only thing to be careful with children is that they very quickly don't know what normal is, because they don't have a long history of life experiences to draw upon.

I don't just get brain fog, I get actual brain pain. When thinking hurts even buying a toaster is traumatic.

Certainly in Scotland there are no hospital based physician's for M.E. as far as I know. Wasn't it the nice guidelines that said a gp should handle it, leaving us vulnerable to the bps lot? I personally don't like the gp thing. I've never had a gp that wanted to do anything with my m.e. my...

Do you notice most of the things listed are patient blaming. I don't think NHS Oxford should help these patients, they've obviously brought it on themselves

I'm hoping that that the long list of all the drugs you're not allowed to have has been removed from the new guidelines along with recommendation that patients shouldn't have brain scans.

Commenting on my own comment: I hope there's some decent guidelines on structures for diagnosis, there's too much refusal to diagnose and mis diagnosis going on.

Is there any mention of having consultant based care? I have a gastroenterologist for my gastroparesis. A neurologist for my spinal fluid leak, I would like a consultant for the m.e. (just like m.s. or arthritis folks have). I don't want a multi-disciplinary team made up of wishy washy...

The only other issue to watch out for is the BPS lots efforts to rename ME and Chronic Fatigue Syndrome as MUS or FND. Once that happens the guidelines will no longer apply to the patient.

I was told I would get better by my teacher who also got m.e. (one year before me) when I bumped into her 5 years later. She meant well but I was so sick at the time and it never happened for me. It's a lottery when it comes to recovery I'm afraid.

Social interactions is still the very worst thing I can do, if I want to ruin my mental capabilites I only need to have 45min cuppa with a friend. My brain is at it's best if i let all my mental prowess and social skills go to waste. Who are these people that come up with this stuff? If covid is...

Pacing is not about a fitness goal! Pacing by it's nature is about maintaining a equilibrim, at whatever level that might be. Seen this incorrect definition a few times now, it's distorting the meaning of pacing and is actually describing graded exercise.

I think an m.e. patient should have every bleeding aid they can think of! They are ignoring how difficult it is for a formerly fit person to use aids in any way. If a wheel chair keeps a person weller than they would otherwise be, they should be encouraged to use it!

Per usual a government apologist that doesn't link suffering to realities of: long hours, poor pay, lowering of professional authority/esteem; and dealing with a chronically underfunded system that stresses the hell out of everyone. She has played her part in supporting policies that contributed...

Don't think it's so simple, covid kills adults but long covid seems to be targeting healthy young folk. Certainly m.e. went for a lot of kids and those of student age. Maybe their immune systems are too healthy.

Are the questions: Did Crawley's research influence policy? Did clinician's use her research in a clinical setting? Did it spawn research from other clinicians? Did it corroborate other research? Did it subvert decisions made on what further research to fund? Or are there better markers for...

I don't think this is entirely true she may have been ignored by some clinicians but she's had a big impact in the world of pediatrics. Before her the main BPS line was that children didn't get M.E therefor when the *NICE guidelines were first written it was Jane Colby who contributed, as the...

My mum effectively hid me and my brothers. She didn't go looking for help. As she was ill (as well as us three) she knew there was a high risk of us being taken away. My dad wasn't terribly understanding and it caused a lot of stress. If the doctors and school had supported us it would have made...

Very M.E. in that you make a couple of mistakes at the beginning and you don't get away with it. It's too late and you regret it for a long time. It's brutal!

When it's a few medics they get disowned by their peers as traitors. Never cross the doctor patient divide.:whistle:

https://www.nursingtimes.net/news/research-and-innovation/government-backed-study-will-unpick-mental-health-impact-of-covid-19-on-nurses-10-10-2020/ Great news everybody, Mr W is going to help nurses. Any nurses in the vincity better go and hide (This might be why he was asked for his opinion...