ME Association: NHS England Launches New E-learning Module on ME/CFS!

In terms of Vitamin supplementation not being helpful, for a Severe or Very Severe patient who is bedbound and laying in darkness, I would have thought that Vitamin D supplementation was essential. It certainly has been in my case, as I got down to dangerously low levels.

 

On the other hand I do wonder whether so much of the 'general hygiene/customer service' level advice has been BPS'ed that there would be some use in reminding people where 'true north' is on how to be empathetic, kind and normal and respectful is.

Maybe something that isn't completely ME/CFS specific but reminds people that 'because we've been so traumatised (someone please come up with another word that won't be misinterpreted and switch that in here ) by going somewhere ill and spoken to like we are mad' approaches, would people remember that it is inappropriate to use the following terms with us. Or these generic attitudes or motivational approaches that might now be used for lots of others will be triggering.

So here's what normal is/used to be and can now be your normal:

And probably not using any terms like mental health would be up there - particularly if someone just did something crappy to you, just phrase it as "the so and so, they shouldn't have done that crappy thing which is very damaging" and not "maybe its your coping strategy". Because when these things happen a heck of a lot more to you (bundled into that minimising term 'stigma') than others, and people pretend not, then just being reassured others don't sponsor it as OK, and see it as a deficiency/issue in the 'doer', is probably mostly what you need to know the world isn't mad.

But also as per BACME not terming 'neglect' or 'not being able to do' into 'self-neglect' - whatever some system is trying to protocol as that's OK. We all know that the distinction matters, otherwise those who trained everyone into it wouldn't have gone to all that effort for whatever real reason they had!

I admit the tone might need a bit more honing to target audience...

 

Haven’t the 3 basic models proposed for ME, & especially in the UK, been psychogenic (hysteria etc - dismiss it entirely) , biopsychosocial & deconditioning (CBT model, Wessely et al, research & care mainly via psychs & therapists) & biological/ biomedical (It’s physical/biological, needing scientific research and medical management approach) & our job is to affirm the latter, which was always clear to sufferers and people who cared for them, but is now irrefutable? This is different to saying we can explain ME much or fully Via these means .... The CDC website do this and the IOM report Did this also. By leaving it a blank& just Talking about pragmatic management a) it leaves the door too open b) it doesn’t move to the medical care & the research model that I want as someone severely affected

 

This exactly