Search results

Something thing I’d like to particularly ask @Jonathan Edwards is how to distance oneself from the biobabble and signal to drs that I am sensible and not a member of the biobabble group, if I go into hospital. Because unfortunately I am in a wheelchair I need eye and ear protection when I go to...

Crikey thats disturbing. What do those of us who're unable to access sunshine do then?

thanks @forestglip

You don’t happen to have a link to that do you? I remember that piece wasn’t it about an Olympian? but I lost the link

Ah yes I see what you mean. I guess I don’t personally find it difficult to differentiate because I can do pretty much nothing that I want. Not even personal care half the time. And I never want to not do what I must not do if I am to avoid PEM. so every aspect of life feels against my wishes...

Yes. that’s my life lol. Even when I was more moderate I had to restrict everything against my wishes. Is that not your experience? Yes that’s what I do if I’m invited to something, but sometimes I need to ask someone to do something for me that I am clearly capable of doing but cannot because...

Oh am with you on fatigue and fatiguability too @rvallee I like how it’s all described on our PEM Factsheet

I too exhausted now to read all the thread as my fatigueability lol has kicked in. But I am fully on board with Rationing. I saw someone on here talking of it & had serendipitously recently said it by accident with a good response - the person got it immediately. So I already replaced all talk...

So anyone who is normally sedentary. Is there any wonder that the deconditioning theory still rages on Exactly. Nearly everyone I know tells me they have brain fog now. Soon everyone will be telling me about their “PEM” when they feel knackered after a day’s work or a brisk walk.

Be good to have a check on UK Brands

There is some music for sleep on the Insight Timer app. My sensory issues make music not something I’d want to sleep to but I think I’ve seen all sorts of brain wave sleep inducer type tracks you might find something useful. Much of it is free. It’s a meditation app so just ignore & skip...

You need to include an option for 'dont know' or something similar. The neuro thinks i likely have SFN but cannot say definitively - large nerve fibres are in good nick & even skin biopsy only rarely shows SFN up so not been tested - it will remain as "SFN??" on my medical notes forever I think...

Sorry @poetinsf I wasn’t clear I know what the Eustachian tube is, I meant what is ‘Eustachian tube dysfunction’. I wondered if it was some kind of recognised condition where it doesn’t work properly. Not sure what it’s meant to ‘do’ anyway? Not implying anything negative I was just curious. Do...

I not read the paper but the abstract reads well I really hope this gets picked up by the MS clinical and research community. If it does it will be useful to us I think. What a great attitude - these patients report problems we can’t detect = We need to change our methods Instead of, these...

Do you mind if I copy your post for personal use Mij? It’s such a good and well put description I’d like to use adapt it for my own assessments. I often forget half of the key details

Yes funnily enough I used the word rationing recently & got an appropriate response & thought I might start using it instead of having to pace myself

Absolutely yes same. It also hurts intermittently with the pain one feels when an aeroplane is coming in to land. It was actually one of the first things I noticed when mild - that I kept getting ear pain- thinking it an ear infection but ear looked healthy on exam. When I was a child I used...

thanks for the laughs @Kitty & @MrMagoo ... the apprentice...:laugh: Did you happen to notice if that tribunal training is available in an open ended way Kitty? I hope never to need it & certainly couldnt manage to watch it atm. But it'd be good to know it's there if needed in the future

I'm not well enough to read past the OP today, but its a subject thats bothered me a lot recently, so glad we have a new thread for it. A small thing but I wanted to just point out that IIRC in the PACE trial they called it Adaptive Pacing Therapy, not just Adaptive Pacing - thus APT, CBT, GET

To me taking responsibility is doing what I can to manage my condition as well as possible. So for example not eating lots of cake if I have diabetes. We are also responsible for getting our own needs met, such as asking for support when we need it, doing what we can. For example if a person...