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I've heard people say it, for sure. When I was working full time I picked up most of the office colds, but I got noticeably fewer as I gradually had to pull back on work and other activities. Which makes sense, specially when you also take into account that people tend to become less prone to...

I drive both my car and my wheelchair like that. Lean forward to create a space behind my back and the seat whenever there's a bump coming up, because it's...really unpleasant in a way I can't describe. I'd no idea I was even doing it until somebody pointed it out, it was just automatic. It's...

There might not be any need to, but it doesn't stop it happening. It's the same reason travelling as a passenger in a car can be as tiring as driving it, because not only is there the awful dizziness and nausea, you can't anticipate the vehicle's movements in the same way when you're not...

@Trish has basically written my submission for me! The only differences are that my response to physical exertion isn't as severe (I need to rest but not be in bed), and I've never had a migraine.

I haven't voted yet, as I can't take one of them. (Some asthmatics find aspirin and ibuprofen cause wheezing or chest spasms that are more uncomfortable than whatever it is that hurts.) I do keep paracetamol in the house for bugs and viruses. Little or no effect on ME/CFS pain, but it seems to...

People have chosen to end their lives because of it, though, that's the worry. Very severely ill people are likely in PEM most of not all of the time. I'd always start by arguing the same, but...theoretically, someone might say they'd rather not be fed if they had to endure X or Y to access...

No, absolutely not. But whether the problem is to do with the guidelines themselves or how they're applied, it has to be approached transparently. Denying nutrition when there are ways to supply it isn't an unfortunate omission, or an unexpected failure, or outside of what doctors can...

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...