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i think the cpet more significant than that and if it had been a reliable option then me doing that whilst moderate would have saved me being out through suggestions of going to the gym whilst doing a more than full time role. and the walls colleagues dragged me on because of their own issues...

And surely the comparison before you make those kinds of recommendations is to check that the disability level isn’t being made worse by the treatment long term vs what it would have been with a rest or step back approach when you think about the care bill some might have ended up with in...

So just in case they are one of the misdiagnosed or the coercion to keep saying you feel well (you are in that need of hope) for how long? vs the risk …. Did they ever even look at the risk?

My goodness when you think about what this did regarding coercion into harm. do we think they were aware about the significance of that one line? fir a treatment that wasn’t checked for harm nevermind the impact on the actual medical condition just by having longer follow up than a few...

Ps when we think about what clinics could actually be doing instead of all the pseudo anti psych stuff they’ve padded their documents out with … there is much much when you scratch the surface on living with this illness that needs people who are interested to learn to understand. It is so...

To feel that you don’t disappear when you get more ill , like the more ill something makes you the better for the person who did it because ‘noone will believe you anything can be that bad’ and I’d appreciate it allowing patients to add what they see as their significant events medical history...

It’s a number of catch 22s there for me. I’m rarely able to leave bed nevermind house but have medical appointments I have to attend a lot reducing walking with these seems sensible but not if I have to lift something out of the car or wait standing feeling fuzzy whilst someone else does...

:bawling: So this is research done on people who are well and definitely not ill with any of the things this is supposed to inform how insulting but how stupid - is this about their ‘preventative medicine’ crud saying … well in well people they found if they were traumatised less they had...

I agree. But do make the point that in Uk ulcer treatment or people who are young and get barn door ulcer symptoms are seemingly pushed down a pathway assuming ‘it’s stress’ first - I say first because quite quickly they end up in hospital visiting blood and it seems investigation there goes...

Spot on

Agree on this. I think demonstrating the full cycle of PEM and nailing if possible the link to deterioration is important

I’m not 100% sure. I think those who do that to us just reach gif that one as stage one in sophism it doesn’t mean if you fix it they will shut up. it won’t make them think the illness is as devastating as it is, or stop them choosing to be persuaded that whatever caused the symptoms it’s...

:hug: not looked yet but thanks for heads up I now feel like when you don’t know whether to peer between the finger of your hands you put over your eyes fir a horror film (although as I can’t watch those at all then a scene that came up unexpectedly in something that promised me it wasn’t horror)

Yes I always assumed that was the mindset of medicine and that they’d be curious to hear about my careful observations when I was ill etc coming from a background where I was sciencey at school so assumed the same people who went on to med school were similarly interested and thought in that way.

Thanks Hutan I thought it made sense but to wade in as I might have missed these being discussed elsewhere. I’d be intrigued given the what do we do now vs BACME clinic stuff to find out if there are some good or better places doing things a bit differently I think it’s Salford or Manchester...

I was that latter group I would have thought when I’ve been less unwell. I had to live a life of PEM and rolling PEM and was firmly moderate but with constant pain in legs and just cumulating exhaustion (despite sleep as soon as not in work and some home days I just could not function until x...

If you break your leg then how it was broken normally isn’t the main lead to how to fix the leg ie treatment same for any other illness. Treating ptsd doesn’t negate the infection needing antibiotics and that’s IF the correlation is the way they inferred - it’s pretty likely ending up with...

So frustrating or maybe interesting if we had more detail on the patients and what they’d done in the lead up eg to see severity and get a sense of whether any of them were in PEM or were ‘exerted’ just by getting there or any other things. I guess we can try and pick through methods for...

The thing is if they have some funding or sponsorship from somewhere whether it’s full time or just coaches of equipment.. well we all know how precarious that can be made to feel

Is this the full / official list? I don’t see the Yorkshire fatigue clinic or the George Eliot Nuneaton clinic I was interested to look up both (and any others that might be not be too bad) to ask if they are still good / how good they actually are I know there might have been changes if sue...