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Where? I mostly use codswallop. Old-fashioned, but more polite than horseshit. Everyone here's free to disagree and they will if they do. I've never known such a bunch of terriers, it's a wonder researchers have any ankles left.

Yep. Almost none of us understood this. Why should people even have suspicions, when their previous experience was that doctors mostly knew their stuff and tried to help? It wouldn't occur to them that some really aren't very bright, and others make stuff up to exploit people on an industrial scale.

I wonder if there's mileage in something about the tools currently available to interrogate large volumes of genetic or other data? It's such a fast moving field that it must be difficult for non-specialists to keep up, but from the work that @forestglip and others have done, it appears there...

I know there's a lot of text to plough through, but the broad message is that doctors are largely to blame. Not all of them, just ones who hand out diagnoses that aren't widely accepted. One of the reasons for this is that the names—in this case 'mast cell activation syndrome'—suggest the cause...

Yep. I find it impossible to disentangle pain and fatigue, especially as painkillers relieve it to some extent.

Patients as a resource would be an interesting topic, particularly for researchers new to the field. Not only standard PPI-type approaches, but involving patients in project design—they'll be such an important part of any new infrastructure. I imagine this is already on the list, though...

I find that shocking, it sounds like a doctor whose only interest is in getting paid! There's no reason to do those tests in ME/CFS or Long Covid; maybe there is if she has other diagnoses, but otherwise it just sounds unethical. Doing needless blood tests isn't harmless. Yes, many of us would...

The usual way is to make a formal request by letter. You need to explain how you're disabled, what adjustments you need, and how you would be disadvantaged if you weren't offered those adjustments. I did this at work, and was advised to use that format by my union. Under the first heading, I...

Yes, and the findings surprise me a bit. I'd have predicted seeing people with ME/CFS using more of their total cognitive resource on the task because every process is so inefficient. I know brains don't work mechanistically, but there is somehow a cognitive equivalent of physical momentum...

Very good way of describing it! ETA: I'm a wheelchair user because I can't walk far enough to do most things, but the first dose of the AZ vaccine kept making me feel as if I wanted to go running. I was bubbling with pent-up energy, almost like I used to be when I'd been sitting behind a desk...

Just that people's most dominant ME/CFS symptoms sometimes differ. Folk here report struggling with recurrent migraines, or the inability to sit up for long, or heavy fatigue, or insomnia that makes their symptoms worse, or delayed stomach emptying—some have all of those. I had major problems...

Actually, a more accurate way to look at it might be the lack of symptoms that I never experience outside of viral infection. Which would be pretty much all of them. I have up to 50% more function and energy, and often feel really good. If I'm bouncing around or coming out with sharp repartee I...

That would be viral symptoms such as a streaming nose, a cough, a severe sore throat, sleeping for longer than usual, long lasting headaches, measurable fever, and needing to stay in bed. PEM does cause many of them, but at a much lower level. My throat's often pretty swollen but it's not sore...

This happens to me every time I get a viral infection. It also happened in response to both doses of the AZ Covid vaccine, though I haven't improved after any version of the mRNA ones. 1) The improvements start two days before any symptoms of the virus show up, occasionally three days. After...

I thought people were grumbling for the sake of it. My mam said I'd find out how bad it can be when my turn came...she was right, as always.

I seem to be from a line of women who never got their thermostats back after menopause. My gran had hot flushes (followed of course by chills that were just as uncomfortable) for the rest of her life. They got much less frequent than in the first few years after menopause, but they were still...

Yeah, I guess it depends how different it is from normal. There have always been things coming along and adding complications; some people with ME/CFS are also affected by getting a bad dose of 'flu or developing new onset migraine, for instance, and others might pick up additional diagnoses...

Would it make a great deal of difference to the underlying ME/CFS? Deterioration could affect people's severity level, meaning that when it comes to participation they have greater access needs than before, but severely ill people who haven't deteriorated due to Covid would be in the same...

In a peculiar way I'd see that as reassuring, because it's exactly what you'd expect. ME/CFS is almost defined by the absence of abnormalities. I don't think you'll learn anything from dozens of tests, and it might be very hard on your sister to keep having to undergo them. Even if there was an...

If any of hem has significant resources, it'd be good to point them towards the SequenceME project at Edinburgh. If that could go ahead researchers would have around 15,000 genomes to work with, from what is probably the most tightly defined large ME/CFS cohort in the world.