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Another thought: a friend with fibro has found Ambroxol, an over-the-counter drug used to clear chest congestion, quite helpful. I think this is something she found online; I'm a bit embarrassed to mention it, and as usual due scepticism should be employed, but it could be worth a bit of...

For me, it depends on the type of pain. Muscle pain = gentle, even pressure or a warm shower. Joint pain = warmth, unless it's a recent injury with swelling, in which case ice is better. Deep aches from over-use or during a cold virus = rest, warmth, and gentle self-massage if possible. The...

I agree – if it helps in explaining it, I find evenly distributed pressure on the painful muscle helps. I had it last night in my thigh muscles and lay face-down for as long as I could, which reduced the pain level significantly whilst my painkillers started to kick in. ETA 'I agree'.

Very creative idea!

#rolleyes...

I agree that studying changes of status is likely to be useful, and we'll be able to do at least some of this much more easily in the near future. Various researchers have been working on wearable technology that might be able to pick up changes of signal – e.g. in sweat. This might not only...

Me too! Mine started long before ME, and I think there are several possible causes. It might even be connected to my autism, I'm not sure.

I like this observation. So very true. I have confirmed B12 malabsorption, and inject myself. Since the deficiency symptoms were sorted out, I've never noticed an energy boost from my injections – I often feel unusually wiped out the day after. Whilst I was deficient, my energy levels were...

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...