Search results

I had heard that it's the impact of applying a therapy for a neurotypical mindset to a neurodivergent one that is the crux. Though not designed for autism DBT seems to fare better.

I suspect measles is not the only infection to do this.... Eta . Article says measles is the only infection in humans that does this.

Thread

The Health and Care Bill 2021 England . There has not been much coverage by MSM but there are key adverts of this bill that will affect those with chronic illness . This twitter thread provides an overview Contacting MPs to raise concerns needs to be prioritised ( bill goes before HoC next...

:banghead:

They are aware of severe ME, but either cognitive dissonance or face saving Leads to this being considered PRS. ...

@Wilhelmina Jenkins - do you have any suggestions on ow to reach ethnic communities to enable engagement? I have managed to get a friend to translate into Urdhu and Arabic so that general posters can be displayed within commnities and places of worship, and they will use their family networks...

Update on reponsses for week 3 total respondents to date = 1182 of these 83% are pwME 12% are carers/ family/ supporters of pwME 3% health professionals 1% other of those with ME who responded 12% classed themselves as mildly affected 48% classed themselves as moderately affected...

The importance of ventilation

Such a sad thread . Nothing learned at all.

I agree @Hutan . My daughter had to give up school completely and it was a huge weight lifted at the time - the pressure to live up to unrealistic expectations was intense. For a consensus document it's a positive. We were starting from a place where PEM itself was poorly defined and mild...

good point - what was work status over time - full time / part time/ voluntary ????? and average hours worked.

I worked with AfME on awareness raising in education which produced a range of info for teachers ( nurses were on " to do" list but fundng did not cover this - though I believe that there were some school nurses in some of the seminars which were delivered). Playing a spoon theory " game" as...

https://www.cam.ac.uk/research/news/large-scale-genetic-study-reveals-new-clues-for-the-shared-origins-of-irritable-bowel-syndrome-and

The awful video where TC interpreted PEM as health anxiety in l9ng covid has been taken down

That's the one ! Thanks @Ravn

The wheel has suffered from over invention for so long ....

From memory there is a book written by a parent with ME for kids ( I will try and find a link over next couple of days )

Yes. A big general data capture and then analysis might find some interesting things. Wearable make this eminently doable. We' ve found oxygen saturation in PEM can dip significantly.