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When I read research like this it always strikes me that the 'something in the blood' mystery is going to prove hard to unpick until we find ways to study the process of PEM. If the fabled Something is found in everybody's blood because it's perfectly normal, and the real problem is that it's...

I can't really tell whether there's a change in smell, because it's masked by the BCAAs I take to help me reduce PEM symptoms. (The supplement contains B6, which is well known for making urine smell fishy.) I need to pee every 20 minutes if I do go into PEM, but I'd assumed it was partly due to...

I do, from post-nasal drip. I've had it much of my life, certainly long before ME. It's exacerbated, though, by my own insistence on occasionally eating dairy, to which I'm now intolerant. :banghead: (Lactase supplements mean I can digest it without discomfort, but it doesn't stop it making me...

My impression over the years has been that it's remarkably good under the circumstances. GPs might not receive all the training we'd hope, but they develop keen instincts; of course people are still missed and misdiagnosed initially, but that's surely the case for dozens of conditions. Whether...

Bee thinking back to my hiking and camping days (40 years ago, so they're buried deep!) We were taught to wear a different set of clothes at night than during the day. There'll always be some vapour from respiration and sweating, and getting damp is the best way to get cold. Hang out the set...

And/or, what are the consequences if a disease process makes them stiffer?

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...