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I think Forward ME need to be reminded about Bob

Maybe he is just putting it out there hoping the question will ripple out through the community and reach wider than he would be able to through professional networking.

Absolutely this for quite a lot. Their quality of life can be less bad than before due to various factors Finding a pain medication that suits you. Working out how to spend less energy on daily living. Getting in communication with others with ME. Having family or enough money to get access to...

The blackout curtains I got from Dunelm for the spare room are pretty good, not heavyweight so relatively easy to manage and not pricey

I’ve got Venetian blinds in the alcove and blackout curtains outside the alcove. Mainly for keeping the heat in or out depending on the season as my bedroom is south west facing and gets a lot of sun - external shutters are not a thing in the uk or I would have preferred them. The curtains do...

I use this to make a cup of hot cocoa but as I only need 1/3 of a teaspoon of this stevia mix to replace 1 teaspoon of sugar I’m not too concerned. Less than 3 teaspoons a week.

Not a very clear way of addressing this in my opinion. Bodging some boxes in without removing old wording is a recipe for confusion.

Agreed @Andy if ME Association members want to suggest ideas I would think contacting MEA direct through their email would be the best way.

IRL?

Oh I wasn’t suggesting this was likely to be worth investigating definitely not worth anyone’s energy

it’s just poor English I don’t think we know from one phrase without seeing the whole email whether the poor English comes from a first or second language speaker it could be translationese

I note it says he will be making the Adolf Meyer memorial lecture in San Francisco in May.

When doing something outside the house setting off I walk normally & on good days don’t need the walking stick. After doing the thing coming home I’m definitely using the stick (folding) as less steady on my feet, walking slowly bent forwards. I’ve mentioned before I call it my little old lady...

No but ME Association have a track record of taking complaints to ASA notably LP.

Yep. I couldn’t bring myself to pursue any details. So no idea of where diagnosed and by whom.

I met someone on Facebook a young woman who had MECFS and POTS I think was the other diagnosis but also had been tagged with FND and told it was an “overarching” category that included ME. So basically used in the same way as MUS. so much gobbledygook out there. I wasn’t able to give my...

Oh right so he thinks cognitive disfunction has never been seen before. Wow.

Even if they would do it just for one sounds useful. Facebook is pretty hopeless for getting to people in my experience.

Ok thanks not a term used in the UK

MVP? (The only acronym I’m familiar with is minimum viable product which seems inappropriate)