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It was flagged quite prominently by The Guardian when I logged on this morning, and ME was mentioned specifically, so people are taking notice (which means that activity is going on to make them take notice!). Have signed it, although disagree that there's a need to make the JCVI apologise...

I'm glad someone's continuing the work on microcirculation. It's one of those avenues that probably deserves to be looked at in more detail than it has been, even though using imaginative techniques to show clear patterns in a good number of patients is still unlikely to explain the underlying...

I'm not sure about this, because whatever the biological cause, it's what the patient experiences. They read that PEM has specific symptoms and is the result of doing more than their bodies can handle, and it makes sense because they've observed it themselves. But when a mild or moderately ill...

Luckily I no longer have any stairs, but I used to do them with the car vac. I sat on one half of the top step, hoovered the other half, and then bumped my way down the staircase on my bum. Later, or the next day, I'd do the other half of each step. It was a bit time consuming, but didn't use...

:rofl::rofl:

It might be useful to get a sense for how many patients the anecdotal evidence holds true? It's so easy to get a skewed idea of the extent of the impact. I have two friends with ME who, like me, have been prescribed lorazepam. It had exactly the effect you'd expect: feeling weak, drugged...

I struggled with constant nausea and inability to maintain my weight for 20-odd years. It was actually the first symptom of my ME. I got into a vicious cycle with it, partly because I couldn't access any medical advice at all. It started in the mid-70s, when everyone was talking about anorexia...

I've been thinking about this whilst watching the cricket this morning. Is it possible that leaving this review on file, for all to see, could prove more useful to us in the longer term? Bear with me. It's easy for ME patients to assume that because their GP has suggested some form of exercise...

Sci-hub link to the full review (haven't read it yet, just putting it here whilst I look through today's new posts!) : https://sci-hub.se/10.1097/WCO.0000000000000553

Sure, but he wasn't just doing this. He's a scientist, talking scientific mumbo jumbo; specifically, a scientist with a professional interest in evidence, failing to look at any evidence. He criticised sick people who tried really hard, sometimes to their own detriment, to help him. It's...

I think the difference is that most of us don't think it's true that they'll see it that way. Undoubtedly some will, of course, but that's why it's important to object. It's not acceptable for influential people to punch down at those with chronic illness. (Small edits for clarity!)

Excellent news. It's such a precious moment for an initiative like this – not only are large amounts of funding for pandemic recovery potentially available, but the US's brand new broom is sweeping up so energetically in all kinds of areas!

This is so true. People who know you well can get glimpses, though – for instance, if I walk more than a few yards and then try to speak, I have visible brain freezes. My friend says it's like trying to talk to me on a buffering Skype call. When it's ongoing brain fog, this is exactly how I...

FFS! Hopefully someone will tweet her a link to the draft NICE guidelines...

I think there's interesting difference, though, between the way the BPS crew use Twitter, and the way ME and LC advocates (sorry, activists) do. The former reveal their biases and complain about being victimised. The latter respond, on the whole, by arguing their responses very cogently. Some...

I suspect there isn't much difference between the consumer ones. They should be consistent enough to establish your 'normal', so if you're unlucky enough to get ill, you can monitor yourself. Beyond that, though, they're not massively useful day to day. I bought mine quite a few years ago as a...

Yes, I think this is important. When using a consumer-level device to establish what's normal, it's probably only going to be useful if you stick to the same one. If the device later shows readings that are consistently unusual for you, and it's definitely not just down to fading batteries, it's...

Funnily enough, I monitored mine over a week or so last year, so that I would know what's normal for me if I did get ill. It can be helpful to know this kind of thing if your readings don't tend to be typical. Just done it again: SpO2 around 93%, so same as last year. If I had coronavirus...

So she started discussing this, blocking people who raised concerns, and sympathising with Clare Gerada about being 'under attack', without actually listening to what Gerada said in the interview? Blimey.

There are lots of other clues, though. I guess when doctors were figuring out what causes Type 1 diabetes, they had to rely on these to diagnose it until someone realised that blood sugar might be important and worked out how to test it. The lack of a test didn't mean that it was impossible to...