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The text below is copy and pasted from ‘Benefits and Work’ website. Didn’t want to add a link in case people couldn’t sign in to read it. While i think its a great way of stopping assessors from lying, the thought of being filmed talking about really private things gives me the creeps. Do...

I ride my motorbike for 15 mins through immense pain, discomfort, jelly body and brain fog (in the middle of the night so i’ll only kill myself if my body or brain seizes on me). I then don’t ride it during the 2-3 months of paralysis aferwards. I wish i could learn some ‘problematic avoidance...

Fantastic @Graham

After the initial shock when i was diagnosed. I had a good cry then just got on with it; not because i’m strong or a fighter but because i had to minimise the devastating impact that constant hospital visits and operations had on the ME. My only pressure to stay positive, came from myself...

Very nice article. Wish more were like that

Phenomenal speech @JaimeS I’m so sorry for your loss.

Me and partner rode around last night to see our local Penshaw Monument near Sunderland lit up in blue for ME... This monument can normally be seen for miles around even when not lit up but last night we literally couldn’t find the thing because of rain and thick fog! We found it eventually...

Yippee just seen my shoes on the Durham photo :)

I just searched youtube for millions missing videos from yesterday, and this symbol popped up again, and gave me that same uneasy feeling. I’m fascinated why its creating a negative reaction in many of us. Not just us as sufferers but carers alike. As others have mentioned, i think it might be...

I think symbolism is a great idea, if people have the freedom to express themselves as they wish. There’s no point expecting hundreds of people to blindly copy you, if the act of doing so either makes them uncomfortable or has a completely different meaning to them and not something they...

I just did the same thing with my Mam and after watching it, she thought we were now campaigning for the right to euthanasia and was very confused by the whole thing.

Me too. It could be interpreted in so many strange ways. Edit: For me personally: my first interpretation of that symbol for someone in whitney’s state (i was in that state for years too) is not a symbol of ‘help me to get better’ I won’t mention what it means to me.

Yep!

@Inara i’m just off to look for an old box... Edit: 50mg so yeah maybe a 25mg dose might be okay

I have totally mixed feelings about this drug. I was on it 5 years ago for migraine and nerve pain. It was a fantastic drug for the migraine and also helped with some of the ME pain. It also gave me energy, but in a hyper wired way. The downsides: * An insatiable appetite, hunger 24/7. And...

Ah right, thanks for explaining, i know about the conversion disorder label, just thought they were using MUS these days. Too many labels

When did this happen? Is it definitely being applied to us? I didn’t know anything about FND until just now or if i did, i’ve forgot :ill: Some of the symptoms are similar but the list doesn’t seem to cover PEM. I’ve noticed on an FND website that CBT has only a 13% success rate and mainly...

‘Carol, who said ME is a physical rather than mental condition’ I wish we could stop referring to this at all. By mentioning it, its putting that idea back into people’s heads every time. Instead of just talking about it like the physical illness it is. We don’t hear people with other physical...

I think i’ve listened to it 6 times now :oops:

Beautiful work @Robert 1973 well done! I don’t use social media but will forward the video to everyone I know.