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Dont lets base that on what I've said - perhaps I am alone in that. From the travel (ambulance or otherwise) point of view, it actually takes a lot of physical energy/strength, to hold oneself in position in either a reclined in a car seat, or laid on a trolley. At every bend and shake your...

I've woken this morning feeling dreadful about what i said. Who the hell am I to comment about any of it really - I'm not in that situationand the last thing i would want would be for anything i said to discourage anyone from pulling out all the stops to save a life. I was just trying to...

We want Karen to live, and, should anyone from her friends/family/loved ones are reading this, we passionately want Karen to live.... to get the best possible care apologies if anything I said makes it seem like i think people would be better off dead! I do not. We are with you and want the...

exactly this

I know we have no proof. But it comes back to people not really recognising that travel is exertion, the same way that sensory stimulation, or just thinking, isnt recognised as exertion. Travel is a sensory and musculoskeletal onslaught, its a massive exertion. And surely (?) it's recognised and...

Yes I do see what you're saying... I think? Would I be right in thinking that while you may well believe PwME that it will make them worse, we dont have any actual evidence (ie beyond anecdote), any proof with which to persuade or make policy from, that it will make the person worse, and that's...

The problem is that being transported will definitely produce PEM, the evidence for that, the only evidence we have, is umpteen people with severe ME saying that travelling produces PEM. I am nowhere near as ill as KAren, and I can testify, from long experience of doing it to visit family, that...

completely agree, I think an inquiry before we either get rid of the old guard, or we have absolutely rock solid evidence of biological abnormality and well understood causal pathways and even treatment, would be disastrous. It will just get framed as a scientific/clinical debate, eminence will...

i just, i dont even know what to say :heart::heart::heart:

Sounds like you've been having a really tough time @Aldebaran's Star , I'm so sorry. I'm afraid I dont know that much about the current state of affairs re FDIA or what the current situation is with paediatric ME etc. Not having any kids myself I've only taken things in in a general way rather...

54% reached today, 10 days left

thanks @Louie41

Im interested in this, wired but tired is a massive issue for me, would like to look into that... have you written about it elsewhere on the forum/do you know of a reliable source of info for exploring it

This just makes me so bl**dy angry on your behalf. I know some doctors are great, but really, so many of them just behave like complete arseholes :banghead: Its a disgraceful state of affairs :emoji_angry: Dont know if you've heard of him but Dr Nigel Speight is a fantastic Dr for children...

Sorry @Louie41 TATT is short for Tired All The Time - a ubiquitous cause for GP consults. ie being tired all the time but little else in the way of symptomatology.

Forgive me if this has already been said, i'm not able to read/absorb much atm. But it seems to me the most appalling multifaceted catch22 as you've said. Because the problem if drs deem lack of capacity and therefore try everything because the responsibility lies with them, is that they also...

I have to do all cognitive work lying flat, which is why i find it so bizarre when I get bodily symptoms after it. Just as an aside, in case it helps - I use an adjustable Lavolta laptop stand, and various small cushions and hand made little supports to get hands/arms in correct position to...

i get that. Sorry i spelled it wrong its Tymes Trust not Thymes

I totally get that.

Big hugs HYTY, thinking of you. I feel the same, its becoming distressing. Its such a tragedy. From being a fan of hers for some yrs, I'm certain that distress is the very last thing she'd want to be causing. But that doesnt change the effect and impact of it all. :(