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If you are getting the SDP when moved over to UC, then you will in effect still get it: there is to be no loss of income due to the transition, so you will get exactly what you do now (or, post successful hearing, when it all gets re-instated and backdated etc). The issue is longer term: people...

The irony. I know a way to cut ¼ million people from the service demand at a stroke. Oh wait, if we also take out all the GWI people, and the MUS people and... Why on earth try to hang on to people who have been mis-categorised, when there is real, unmet need for people who do have mental...

I guess I would prefer it with as few pre-suppositions, or pre-determinations, as possible (even though it's obvious to us that there is a threshold). Either way, though, provided what follows, ie the description, is accurate, anyone with ME would immediately recognise post-exertional malaise...

I think that might be a bit circular - it sort of pre-supposes PEM, or at least a reason to have an exertion limit (beyond being flesh and blood). How about the neutral, "Does exertion ever cause you to experience any of the following?" Do we need to distinguish types of exertion (physical...

@Viola, that's nifty! Alternatively, to meet @Wonko's other requirements of levitation and portability, how about one of these (costume probably not essential ;))

Yeah, I am so severe I am in permanent PEM, it only varies in degree...random or otherwise remissions for any reason would be welcome :)

I actually like the descriptors the sub group is already opting to use, which are slightly expanded versions of your points @Trish, The question is, how to get all the points raised in this thread into a form suitable to suggest as a better questionnaire to go with the description.

My mistake, @Graham, I misunderstood what you meant with your analogy then :confused: (got a flu-ey bug, so brain is even worse than usual :banghead:). I got the impression that at this point they are in fact just looking for a way to determine whether PEM is present or not, in order to rule...

Interesting idea for an analogy, @Graham. The degree of sunburn actually is slightly dependent on history of burns, or sun exposure. A degree of tolerance can develop with exposure over time eg, I also burn easily, but not so much on my face and hands now, thanks to years of sun on those...

It's not always optional though: at a severe enough level, just continuing to be alive is enough to trigger it, because there is literally too little energy in the system to ever stabilise/for any significant length of time. In this kind of case, triggers include sensory input, over which a...

My brain is not up to much today, so I apologise for the brief response to your thoughtful and detailed posts. Yes, yes, and yes. Agreed, this is much better. Ideally yes, very much so. There are a lot of patients here, so a combined, agreed, submission ought to count for something.

And it's transparent...

:jawdrop::dead: (Not that it doesn't feel quite deathly most of the time, when rather severe ;))

I guess it's fair enough to ask them - very inclusive and patient-centred, and all that - the trouble is, it implicitly suggests that recovery might be something other than totally well, or just as you were before you became ill. Seems like a bit of a trick question.

Would that mean we've got the biggest button?

@Trish, I can't access the paper, but the NS article mentions two other groups of mice being included as part of the experiment, If mice already had leaky BBB prior to the stress, then there should be mice with leaky BBBs in all three groups. Presumably, then, only the mice in the group that...

Actually @Vertical, that reminds me, I do get quite a lot of chest pain even with cardiac medication. So used to it that I forgot about it :rofl: It also ebbs and flows.

@Sly Saint, can you add an option for intermittent pain (of any kind)? I'm lucky enough to not get pain generally, but do get eg, muscle aches and pain due to sensory input etc depending on level of PEM.

It appears that people do recover using the LP, (irrespective of this trial's findings), hence the enduring interest in it, and the puzzle. The problem is, it's just not clear what they're recovering from. If all that was needed to recover from ME was a change of thought we'd be laughing - we...

Mind. Boggled. OK, well at least he admits there are several papers with errors...