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Part of the problem seems to be the use of shadowy categories that are both explicit and not. Some people are put into them, explicitly or not, when guidelines don't provide answers. The danger is that this allows healthcare to do nothing. If a system's based on guidelines and there's no...

The wired-but-tired PEM phenomenon might be amenable to investigation. Specially as it's visible on heart rate alone for some of us. It starts on the day I've done the activity that's tipped me over the edge, or the day after that. It begins with feeling very sleepy, so I go to bed and lie...

I'm going with @SNT Gatchaman's term. Disablingly severe and persistent over months shitfuckery...

It is. It's often talked about frankly and openly, sometimes with humour if that's what the person needs. One of the issues explored is whether there are things the person's afraid of experiencing as they get closer to death. Often specialists in end of life care can reassure them, but without...

Is it useful to talk about what might happen after PEG placement? There are obvious risks with the surgery, but there are probably also concerns about things like physical and sensory atrophy. That's where gastroenterologists might actually deploy some of their expertise, if they could only be...

I wouldn't describe it that way, as there are additional symptoms. They're still on the list of symptoms commonly associated with ME/CFS, of course, but some of them are only present in PEM. In my case it's things like sore throat, swollen glands and runny nose, insomnia and sleep pattern...

It's the tiny card you put in a mobile phone, which has the subscriber's phone number and various other data on it. Without that info, the mobile won't work. You can transfer the same SIM card from one phone to another, which transfers the phone number over as well. I had to do that when I...

I had the over-65 'flu jab for the first time last year. I asked the pharmacist about the difference, and he explained that as people age, vaccination doesn't always trigger such an effective immune response. To counter this, they add an adjuvant that helps stimulate more of a response. That...

Maybe one of Maeve's gifts to us is better collective awareness of the need to describe ME/CFS without theories or mechanisms. I'm used to reading about healthcare failings, but some of the doctors' inquest testimony hit me in the face like nothing else has. Not one of them was willing to say...

Welcome, @Aldebaran's Star. :) Me too. I sleep better when pacing well, and best of all if I get a virus or have a vaccination. But being unable to get more than a couple of hours' sleep because of being wired-but-tired doesn't always mean I feel the worse the day after. I feel rough when I...

It seems to be similar to, but not necessarily the same as, restless legs syndrome. People with RLS seem to say it happens most often at night, in bed, and even small movements relieve it. The ME/CFS itch doesn't quite have that pattern. It's not always at night or when lying down, and while...

We're all a bit different, but the various kinds of pain I have aren't like "normal" pain. It's not like a bone, tendon or muscle injury, it's not like inflammatory processes in bruised soft tissue or arthritic joints, it's not the soreness and heaviness of having been on your feet too many...

Maybe read the guidelines over a couple of days and then leave them to percolate for a while in your back brain. Or even do the PIP training Benefits & Work offers. There's a cost, but it's not huge. There may also be useful threads in the Benefits and Work discussion pages. It took me months...

I don't know, but possibilities are that either the doctors didn't believe it could be justified, didn't believe a decision to order it would be supported, or believed it was too late and surgery would only hasten Maeve's deterioration. I had a relative in rather the opposite position, pressure...

Would it make a difference if someone did all the prep? I sometimes get help with that for batch cooking. Chopping raw veg is a whole order of magnitude easier to explain, but it still makes life a lot easier.

Sort of! Though it could just be someone who for whatever reason needs ultra-flexible work and not too much of it. I used to have help with cleaning from a woman who'd been made redundant a few years before pension age, who topped up her income doing cash-in-hand work four mornings a week. Her...

Maybe just a lesser evils argument, in extremis? No pilot wants to land a plane on a road, but if the engines are gone and the only other option is crashing into houses...

That's interesting. Have you found it all right with doctors? I mostly tend to talk about PEM as a consequence, rather than a cause or a separate thing. Not because I'd understood the problem with trying to explain the processes—I only learned that here, and even then it took a while to grasp...

If they're anything like the local schools built under it, their useful lifespan isn't much longer than the rental contract. We'll soon be back to square one, with the only durable asset gained being a ready-levelled building plot and an asphalt drive. In the case of the NHS, the building...

The autism passport might be a useful starting point for some pwME/CFS. It lists some of the things we might want to draw attention to—specially as a brief summary for nurses, who'll be handing over to others at shift changes. Most important things to know about me How I would like you to...