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But surely an exasperated ME patient doesn't have any power at all, and that's why they're exasperated? If they had even a fraction of this kind of influence, they'd hardly waste their time insulting Paul Garner. If you could get into the House of Lords by bravely ignoring a few Twitter trolls...

There's also the fact that clinical response doesn't necessarily equal recovery. We don't know the extent and nature of the response, but as with most drugs, it would be very surprising if it were remission of all symptoms. The fact that PWME often have demonstrable cardiovascular...

Yep! Not always, but very often.

This is the bit before that; before I have any inkling that I've picked up a cold. When I worked in an office and there was a bug going around, an unexpected improvement was usually the point at which knew I was in for it too! The sniffles and crash would follow on afterwards.

It no longer surprises me – but it's still hilarious to see quite how far below sea level the hills are on which they've chosen to die.

The interesting bit is why the early immune response to a vaccination or a head cold can do this so effectively, with no resting required (and, when I was still working, in spite of being perpetually in PEM).

Yup. I think he's best ignored completely by patients. Let him shout into the void.

I've just seen a blog about DecodeME, which is linked from the MEA Facebook page. It's written by a not-for-profit car donation scheme that has named the MEA their charity of the month. It suggests that the study involves taking blood samples...

To be honest, I'm a bit puzzled by the continuing focus on viruses in some ME research. Given that there have long been reasonable grounds to suspect several different triggers, is it useful to put resources into defining exactly what they are until we're further along with research? It doesn't...

Absolutely. I've had the post-vaccination energy boost today, with the usual consequences for my leg muscles. Normally the contractions seem weak and shaky, and the muscles feel unreliable; today, there's a smooth, strong contraction and a spring in my step. I can snap straight up to a...

'Evidence-based' in the same way as those combustion tests on ACM cladding panels, perhaps?

In past work on inclusive access, we found that that enabling as many different ways to participate as possible usually widens the group you manage to reach. So for instance, where we decided on an online questionnaire, we also offered a paper version sent by post. In this case, it might also...

Sounds as if it might be time for an email to the local BBC/ITV television news desks? Or at least a post on their social media feeds? Also, a friend with an unhelpful MP said his attitude changed magically when she posted a series of public tweets about the issue that criticised his lack of...

Thanks very much, @Michiel Tack, for explaining it in an understandable way for those of us who struggle to make sense of numbers and statistics. Your piece has made it a lot clearer. Two tiny edits:– Who Are the Authors?, paragraph #2: name misspelled as 'Flottrop' Risk of Bias, paragraph...

Ah, okay, I hadn't seen those. Isolates are an absolute bloody miracle as far as I'm concerned; I never thought anything would be developed that (a) blocked all sound, and (b) would actually be wearable by an unreasonably allergic and over-sensitive autistic person. They've saved my sanity on...

I guess they have to recoup pretty substantial development costs, which is why the 8p of rubber costs so much! I get more annoyed when it doesn't come down after the first couple of years. No experience of this type of ear plugs myself – they do seem to get good reviews, but I'm not sure...

:laugh: Mine too. The left and right ear plugs sit at bizarrely different angles. Worse still, they obviously ran out of materials that particular Friday afternoon and made them pathetically small – though it's clear which one which they made last, as it's even narrower than the other. In...

Had my jab today. The only unforeseen snag was being asked to remove the FFP3 mask I'd bought for the visit and had put on a few seconds earlier, and replace it with a clean surgical mask. I told the volunteer doing the welcoming that I was too scared to go into a busy building without a...

Yes, I've just put mine in, and once they're seated, I can't really feel them. I know they're there because I can't hear anything except that slight humming you get from blood flow, but there's little or no sensation in my ear. * The reason these work for me as a side sleeper is that they go...

If small moulded ones hurt, it will probably hurt to put in the Isolates – it hurts me to get them in, but once they're in place, it subsides. I can eventually forget about them enough to sleep. At least the silicone on the end is so incredibly soft and squishy that you don't have to mould it...