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I have it too, but I'm female and my doctor said it's much more common in women. Apparently, some people with it go on to develop autoimmune illnesses like lupus, but most don't. He said it might turn out to be useful, but they'd probably need to find a second clue that goes along with it before...

I think Dr Charles Shepherd of the UK's ME Association shares this lack of muscle pain with you. When researchers design surveys, it probably ought to logged positively in case it's an important clue (rather than glossed over as an unticked box because symptoms always vary between patients)...

I forgot about this one. Mine is more my hands and feet, but they're always blue in the evenings. There might be a straightforward explanation, but if I ate high-cocoa chocolate in the evening, my palms would go really deep blue. I no longer eat chocolate so I don't know whether it's still the...

What a great idea for a thread. I'll start with major impacts that are not on my medical record, roughly in order of impact (might need to add to it later): Having to remain 95% housebound to avoid exacerbations, and the preparation and recovery time needed for every outing Memory and...

A bit of an aside, but when it comes to research on what happens in the body during activity and the resulting PEM, the need to ask everyone to do the same thing always seems to be a bit of a stumbling block. Do you reckon this is always necessary, especially as it isn't really the same...

I think we need to take a cautious approach, though, since it's possible the broad phenomenon isn't even unique to people who go on to develop long-term symptoms. People making a slow recovery from glandular fever, who aren't familiar with PEM as a concept, may describe it the same way as ME...

I'm guessing it probably depends on what they want to assess it for? To model it, predict it, investigate potential causes of it, think about drugs for it, work out whether specific types of activity are more likely to cause it than others...? Different questions may need different levels of detail.

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...