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I'm so sorry to hear you're in this impossible situation. Some thoughts....do people in the US routinely abandon wooden pallets by the roadside, etc, from where you can pick them up for free? If I were having to sleep out, I'd do my best to build a sort of bed box (with sides and ends as well...

This Sci Hub link seems to work (in the UK, anyway): https://sci-hub.tw/https://www.sciencedirect.com/science/article/pii/S0889159119307627

I love those 'headslap' discoveries – they make scientists seem much more human! (I feel as if I'm from a different planet to people who can grasp scientific and mathematical logic.)

'Virus that's not a virus' really chimes with me. I feel as if I'm coming down with a cold, but it never quite materialises. I also think the pattern's much more important than a list of symptoms, specially for people who're still working or studying. • Keeping weekends clear to rest •...

I've had another thought. It's probably so idiotic that people will throw crockery at me, but just in case there are ways to automate it at low cost... Lots of people are interested in their own genetic data. Some of us may have had one type of sequencing or another done, and I'm sure lots of...

Another possible way forward is to encourage the engaged patients to act as nodes in the network. For instance, I have seven friends with ME, and three of them might well not pick up information about a study like this. One doesn't use social media or take part in forums, and is selective about...

The answer should probably be the same way as for other conditions, through primary healthcare or hospital specialists. But since many patients avoid engagement for obvious reasons, and far too many doctors aren't interested in ME, that's not really viable. Social media is one potential avenue...

I agree, overtraining is potentially an interesting area. There are some very good sports scientists at Loughborough University, who probably know as much as anyone about it. Personally, I'd like to see some strategic thinking about what research avenues look most promising, work on how to...

Arts Council England created several of these, when someone decided that purchasers of arts provision for children & young people (schools, mostly) needed to be 'put in touch' with artists. Doing so, they said, would enable more and better art to happen. They created bridge organisations, full...

Well, at least we'll all know when science does finally catch up with ME. The studies will all be blaming patients for making themselves worse by pig-headedly doing stuff they know they probably shouldn't.

I took part in this study, and I definitely find the weather influences my pain. I haven't read the full report yet, but I'm not surprised they found some level of influence at least.

This is entirely true, but it would also be useful to include promising results that really need to be replicated. Perhaps we should begin by finding ways to segment or organise the information, to help us put it together?

Me too! Even if it turns out that we could never have unpicked ME without current or future technology (which is entirely possible), it would have been nice to be supported instead of gaslighted by the medical profession. However long we've been ill, all our lives would have been so much easier! :)

No, not if the proposition is that an IDO2 mutation is causative of ME. But Dr Phair, who developed the theory, has been clear that it isn't causative. If the theory's correct – and that's still a big 'if' – it's simply a vulnerability that won't affect the majority of people who have it. It...

I don't think anyone's ever said that, as something so common couldn't possibly be a useful marker. What they're saying is that it's part of a theory of how ME is triggered and perpetuated. The next job is to try to disprove this theory; if they can't do so, then it begins to look much more robust.

He's referring to a specific study – the Severely Ill Big Data study – not literally everyone with ME. Very common, more than 50% of people are likely to have them. They've never suggested that IDO2 mutations are in any way causative of ME, just that they could predispose to it. If the theory...

I heard on a radio documentary that the appendix has evolved on about 30 separate occasions in various species, which would seem to argue against it being a vestigial organ. They were discussing the theory that it may be useful in immune function, and as a repository for digestive bacteria in...

Hopefully it should make it a bit easier (fingers crossed, anyway). I'm now a council tenant, and was lucky enough to be offered a newly built bungalow. It has a pretty small back garden, but that's the only real drawback – otherwise, it's lovely. Spacious, too, as it's designed for a wheelchair...

They are mandatory, though, if you meet the conditions. Because the safety of the occupant, and access to a bathroom, are at the core of some of the conditions, an ME sufferer with physical limitations has a good argument. If you receive mobility allowance, or have a history of dizziness that...

I commented to my project manager that I felt lucky to have been awarded a sizeable Disabled Facilities Grant, given the pressures on local authority funding, and he explained that they don't actually provide the money. The scheme is funded by central government; the LA project-manages the grant...