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I don't expect to see much change in time to make a great deal of difference to me, to be honest. But I'm sure we'll find drugs eventually that offer worthwhile improvement, as in other chronic diseases, and we may learn how to lower the risk of developing it too. Let's hope the genetic study...

I know this wasn't addressed to me, but when I think about it, all I get is a question in return. If there is a really effective disease modifying drug already out there, shouldn't we have stumbled on it by now? ME is common enough that patients must surely have been treated for other conditions...

It would have been very useful for me. Doing part time fixed-term contracts could have meant I was able to stay in work longer, using a system of working for a few months and then claiming ESA during the obligatory recovery period before starting the next one. The trouble was that if I was off...

I wonder whether it's occurred to them to do this study on people with chronic pain caused by cancer, or inflammatory arthritis, or basically anything that isn't a maligned disease like FM? Thought not. Cancer wouldn't stop you publicly lampooning halfwits who suggest that walking isn't curing...

Happy new year, Mike, and have a good one in Norway! I don't have any contacts there, but other folk might.

Ah, but that would need a psychologist who hasn't been drinking the Kool-Aid. Who of course would be ignored by the rest, because... Seriously, though, it's an excellent point. Though I do half-imagine someone seeing us surviving, largely psychologically intact, and asking what on earth is...

As someone who knows nothing about drug trials ... would it be feasible to save research money by running two concurrent trials, e.g. LDN and low-dose Abilify? Of course there would be additional costs to design two protocols and recruit two sets of cohorts, but you wouldn't think the cost of...

My reason for not trying it was that I typically take a dose of tramadol for nighttime pain at least twice a week, which works well and doesn't have any side effects. It makes a big difference to my QoL, so I decided that swopping it for something which might or might not be effective against...

Could it be repackaged in a pharmaceutical shell, so that it's not obvious? I suppose that could cut across informed consent, though.

I hit the same issue. I can only describe pain using sound metaphors, e.g. one element of my chronic pain is like flowing traffic on a motorway—ongoing noise that rarely alters in pitch, but varies in intensity. Other types include a continuous middle D played very loudly on an electric...

She also writes for the Graun, and has a piece today in fact. I've never read anything written by her about postviral illness; her usual contributions are opinion pieces about the NHS and government health policies (she rarely takes prisoners)...

We probably need a noise-cancelling-headphones-and-sleep-mask combo, don't we!

True, but there are also the options of making care a more attractive option by offering workers formal training and career progression, and establishing an NHS-like pay framework that recognises their skills; and by making it feasible for family members to choose to provide care themselves if...

Children under 16 are, as are people born before a particular date in the 1940s (my former neighbour is still on it, as he'd reached retirement age when PIP was introduced). There may still be some (ETA: working-age] adults who haven't yet been "invited" to claim PIP, but presumably not many?

PS: before buying a bar stool, it's worth making sure it's the right height. I'm quite tall for a woman at 5' 9", but I still can't get onto a full height pub stool because it requires you to be able to put one foot on the rung behind you, and push yourself up onto the seat with one leg. I...

My friend has some very like these in her kitchen, which are sturdy and comfortable enough to work on in the kitchen. They old almost flat: https://www.ebay.co.uk/itm/334468941882 We had some similar to this at work, a more expensive type but stable and comfy: I found perching stools for...

Or maybe just give the grant straight to the patients, because they'd be a whole lot less stressed if they could afford to live somewhere that wasn't a damp, crumbling wreck and their kids had enough to eat.

Interesting. I suppose if they don't have a policy of setting priorities for specific named conditions, then that's probably the best outcome that could be expected. It's really positive that she's drawing attention to ME and that she's had a sympathetic hearing from the parliament, even if...

I've used the example of a sprained ankle, as it's an injury most people have probably had at some point. Even when the ankle's recovered enough to walk on, any little jolt will set it off throbbing again; and if you aggravate a sprain injury by twisting the joint again even slightly, it can...

But there's also ... https://www.theguardian.com/society/2022/dec/25/long-covid-patients-unproven-expensive-treatments-experts-warn