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And just think of all that lovely extra data about people they can hoover up and sell on £££!

It's the ultimate Catch 22 - If you say how ill you are and how much you struggle to even attempt the basics, then the perception is that you must be exaggerating. You must have a mental health issue because nobody can be that sick without actually being sick (according to current tests and...

I heard of one case where the person had been provided with a wheelchair and aids about her home, based on an assessment of her function & needs. It meant that she could be left alone and her husband could still work. Then the powers that be noted the diagnosis of ME/CFS and with virtually...

Right. So completely ignores the issues with brainfog for a start.

Yes, I think it's a self limiting behaviour in our case. Either there's little they can or will do for you in many cases. You soon realize you're wearing yourself out for no real benefit. Then it turns in to an avoidance strategy when it dawns on you they can do you so much damage.

I'd love if we could document if or how harms were measured at all. They have a very blasé attitude to patient safety and have gotten away with it so far. I would go so far to say that this looking the other way is a fundamental part to the IAPT implementation. By the time enough patients are...

I was cringing as I read this, what'll we be accused of this time.... but no, surprisingly fair. It is a totally different experience. Several members of my family suffer from a well under long term health condition for which there are treatments, but no cure. Their attitude to illness...

Thanks. :thumbup: I'll ask about adding it to our library.

Is there a copy in the library @adambeyoncelowe? I had a look under PEM and Questionnaires and Scales threads and didn't spot it. Would be a useful addition, I think. Completely agree, you can't just take PEM but need to see the whole symptom list.

For some people PEM can hit immediately, for some if can take up for3 days, or can vary. So the same person at early onset might experience it differently as time goes on or as their severity level changes. When I was newly ill and diagnosed as moderate - within the first couple of years - PEM...

IM was supposed to be going on a short trip which would involve 2 international airports each way, but he can't get flight times that work. So, that's on hold for now. I can't say I'm not relieved. If I'm worried about anything it's the food and meds supply chain and that's beyond my control...

I'm in the south east of England. I'm pretty much housebound all the time. Might make it out once a week and, ME permitting, I'll still go out. Having said that I live in a relatively rural location. My husband sometimes has to go in to a city for for work. Has to fill the car with fuel...

Quick aside -sorry - Could you cut them out with a scissors @Wonko? Sometimes there's just enough room at the edge of the foil blister.... Which won't help at all if you can't get them anyway I realize.

Very thought provoking and moving. Humans, no matter their circumstances, need time and space to grieve, be angry, be sad. It's only in experiencing these emotions that we learn to cope with them. They're just as much part of life as love, compassion and gratitude. Experiencing them doesn't...

:rofl::rofl::rofl: Sarcastic laughter from the UK.- Levothyroxine - street value of zero, non addictive, essential for hypothyroidism and generally a medication you'll need for life. The NHS (wrongly) dictates that despite the body's demand for T4 fluctuating naturally (albeit slowly) once a...

Yeah, that's what I thought too, which is why I got IM to check them too. Nope, warm either side of the cold patch.

I'm not sure of when it was, maybe when a parent died, but my siblings and I all had to sign paperwork. This was shortly before I was diagnosed and they really took the proverbial - " What the hell is that? " "My name!" " In klingon? " Cheek!

No, I don't think I've experienced this in a specific joint, but occasionally in a hand or foot (not symmetrical), or soft tissue. It doesn't hurt, just a sensation. One of the issues I have with the buzz/vibration of my HR monitor alert is that it can feel very similar and I've ignored it...

I do occasionally get cold patches. I'm not sure if it was restricted to my knees though, but it may be that I just didn't notice until it spread. Or that I haven't remembered. I get cold thighs - from the knee to halfway up the thigh, sometimes the whole thigh. The leg above and below feel...

Swots ;). I got into no end of trouble over handwriting. My parents moved house and I had to switch to a new school. Although I was fine academically, they decided my handwriting needed urgent attention. So, as an 8 year old, on top of all my usual homework I got several hours worth of...