UK: Astriid - a matchmaking service between the chronically ill and employers

Not a recommendation, I haven't used them and I don't know anybody who has, just thought that it might be of interest.

https://www.astriid.org.uk/s/about

FAQ available at https://www.astriid.org.uk/s/faq

 

I have a feeling that Miranda Hart mentioned them in one of her blogs as a charity she supported.

 

Action for ME have been publicising some of their events recently.

 

I've not watched this, so can't comment on the content.

Balancing Work with ME / CFS

Code:

https://youtu.be/MkjEb57x1OA

https://www.youtube.com/watch?v=MkjEb57x1OA

 

Thanks Andy, I did have time as back too naff to concentrate much.

It is based on views and comments of 3 people with ME who volunteer with Astriid, and some of their tips and advice.

Quite watchable, but probably not that relevant informative for majority of people here.

 

“What are energy limiting conditions? A guide for employees and their managers is a new resource, produced for Astriid charity. I hope it will be a gamechanger for unlocking conversations about health, disability and work, and lead to more people with chronic illness getting the support they need at work.”

continues at:
http://www.catherinehale.net/2024/02/what-are-energy-limiting-conditions.html?m=1

 

Do people think that this is a useful categorisation 'Energy-Limiting Conditions'?

It is not something I am aware of medical professionals talking about.

The net seems to be cast very wide - including about 7% of the population.

Is it helpful in terms of educating authorities about the nature of disability in ME to lump it in with rheumatoid, respiratory disease and so on?

 

I found it useful at work, but people knew the background already.

There might be useful comparisons with some other chronic diseases, perhaps including some cases of MS, rheumatoid, FMS, post-treatment cancer fatigue, etc. Probably not respiratory diseases, that does seem a bit confusing.

It's useful for the bits that are especially difficult to understand, which include:

• the unpredictability—people can't be sure what tomorrow or next week will bring, and even with good management they can have flare-ups or go downhill;
• the fact that no real baseline exists, no matter how hard a manager wants to will one into existence to write it in an appraisal;
• the occasional negotiability, where someone stable may be able to increase their capacity for special events with enough preparation and recovery (but that doesn't mean they can guarantee to do it again for next year's festival week);
• people looking quite well even when they're not okay at all;
• above all, the fact that without accommodations, they may burn through a large proportion of their useful capacity in non-productive activities—maintaining exacting standards of appearance, travelling to workplaces, the imposition of inflexible schedules, having to walk repeatedly around large buildings, coping with noise and distraction, being expected to socialise on their breaks, not being allowed to manage their own time.