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A lot depends on whether the system recognises that the negative effects of doing something can be so severe as to mean that you effectively can't do it. In theory at least, the UK system does: e.g., I can't walk 20 metres repeatedly, reliably, and as often as I need to without triggering PEM...

My question is, why do they use a photo at all on a general article? If you see something in the paper about a new treatment for another condition, do they use a picture of a cancer sufferer or someone with rheumatoid disease? No, they use some kind of scientific-looking diagram, a glass vial...

I've only taken topical steroids, but the experience isn't good. Beclometasone, an asthma med, reduces my function by maybe 20%; a steroid nasal spray, fluticasone, caused all of my periods of severe ME. My GP told me that it probably stops my adrenal glands from working properly, apparently a...

It sounds astronomical in the UK, but average graduate salaries are up to three times higher in the US. There are numerous reasons for this, but significant differences include no free-at-point-of-use healthcare, housing costs in major population centres being higher than in many parts of the...

This has been talked about for years, hasn't it. I remember reading (I think in the 90s?) about theories that the burning in our muscles after activity, which doesn't feel like a muscle strain or the soreness that follows unaccustomed exercise, might possibly be due to a mild reperfusion injury...

In addition to ME, members of our community have the full range of problems that can affect human beings, so it's lucky that we don't need any of them to be advertisements! I imagine fellow patients would offer nothing except compassion to someone who has lived with two exceptionally difficult...

@AR68 may be able to help with this. Quite a lot of images and text are available on this thread, which will also take you through to the Twitter thread mentioned...

Moved post In England at least, wheelchair services tend to be hospital departments. GPs are usually reluctant to refer, and even if you are lucky, the basic self propel wheelchairs provided in the first instance are frankly easier to get from a car boot sale, often for under £30. The...

Thank you all – that reads very well and the arguments are really clearly stated. Let's hope we get some answers.

But it presumably wasn't the result of them being bullied into submission by "action" carried out by "militant patients", and it was the result of a review of evidence. The evidence might be hopelessly weak and the conclusions might be unreliable as a result, but it's still a review process...

Surely he'd only really need to read the draft, though. The story is about the response to it by a group of doctors and researchers, who're conspicuously few in number and employing familiar and not very sophisticated tactics. That alone ought to raise at least one eyebrow.

It is, of course, but NICE had already done the work for him. In great detail and with not inconsiderable expertise. All he needs to assess is how likely it is that the NICE committee is made up of gullible idiots, and whether the objectors are actually presenting any scientific arguments. I'd...

I explain that I'm disabled, so moving X pieces of furniture would need to be priced into the decorator's time (which signals that you don't expect it done as a favour). They always want to come and look at the job before quoting, so they can see what needs doing easily enough and include it in...

Yes, there are studies ongoing in the UK. The trouble is that it's not easy to draw clear inferences from waning antibodies alone (they're not our only defence against infection), but on the other hand, there are people who're extremely vulnerable because they have low immunity, and when it...

I think you can opt out of sharing with commercial partners before you sign. I ticked No for that box, even though I don't think I feel particularly strongly about it. Most of the autistic folk I know personally seem to have joined up. This is actually how I heard about it, as I'm not a member...

Didn't hear that one! Honestly, bloody journalists...it's mostly about genetics (so in fairness I suppose mothers are 50% to blame), but the only questions I can remember about family in the main survey are whether they had autism or related diagnoses, how old your parents were when you were...

As people may have heard in the news, a new study launched yesterday called Spectrum10k. I thought I'd post it here in case any of our autistic members had missed it. Headline description Spectrum 10K aims to investigate the genetic and environmental factors that contribute to autism and...

There was talk in the 90s about ME patients being in a sense comparable to highly trained athletes, in that both groups are functioning at the limits of their endurance. I don't know whether that comparison is meaningful or not, though.

Does that mean you don't owe him the courtesy of refraining from tweeting his hilarious tantrum for the entertainment of Sweden's ME patients, then?

Are you on Twitter, @Yvonne? That would make a really neat thread to shortcut the arguments.