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Hi @trenteliason i hope someone has already let you know about the Voices from the Shadows project here in the UK and all interviews they did a few years ago but I thought I’d post a link for you just in case...

Did the end users have any involvement in deciding what would meet their needs- product concept or here’s what we’re doing let’s get a few users in to test the design

Reliable :rofl::rofl:

How many of us can say we live in an ideal environment. Environment covers such a broad range of factors from noisy neighbours to having family responsibilities to lack of support witg personal hygiene, cleaning, cooking, dealing with bureaucracy etc , also lack of understanding by paid...

:wtf: No way that guy’s attitude is going to change whatever the NHS “delivery” plan includes

I do get sore throat right to laryngitis but not runny nose. I’ve tended to differentiate having a bad cold or PEM on whether I get a runny nose or not.

No. It is just bandwagon jumping.

Shortly is a ridiculous response. If they mean before recess in a couple of weeks time they should say so. I can only think they are now holding it until DecodeME results so they can attempt to pass off the delivery plan as “evidence of doing something”

What does PHOSP stand for?

I wonder what my coal miner ancestors would make of 6hours strenuous exercise being described as extreme.

:wtf:

if people are telling you your wording can be interpreted in a different way than you say you intended then you need to tighten the wording so it is unambiguous.

Slight dilemma- do I need to see what he’s written or do I know already so don’t give him my traffic On balance I don’t think he’s worth wasting my cognitive capacity on

Let’s hope so

I tried having dental work with the adrenaline free jab but had to wave my hands to get a second jab as it wore off really quickly so I just go with the normal one now. I do definitely worse PEM after dental treatment than going out for other reasons but I’m lucky that I don’t get any fainting...

They mentioned time upright as a measure but unlike the other measures didn’t say anything about the results. Surely time upright is going to be an important factor on cognitive performance for those affected by OI so should be considered in any judgment of improvement.

Also known as clickbait

“reeducation”

Sorry too @Kitty i have had difficulties but not even on the same scale as that A q tip type thing makes sense to me shocking really it has taken so long to come up with this

“someone reasonable”rather than someone else reasonable I reckon