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Missed another reply, sorry! Lipoedema. There are others, including familial multiple lipomatosis and Dercum's disease. The photos you see online are a bit misleading because they're usually of people with highly visible lumps and bumps. Most of mine aren't visible in that way; some of them...

Not all cases will be clear cut, but you'd think at least the staff who were deployed to Covid wards with inadequate PPE ought to have a very good legal argument, whatever their job title. It wouldn't surprise me if proceedings followed their normal course, though (i.e., justice takes decades...

From @MSEsperanza: IQWiG: Does shared decision-making between doctor and patient lead to better treatment results? (Not specifically on ME/CFS -- didn't check how they investigated the topic ) Google translate -- slightly edited to remove glitches with inserted links: Preliminary...

Good news that such a strong team will be looking at this more closely.

Tinnitus is also a suspected side effect of some meds, including tramadol (which I take at night some of the time). It's not listed formally as a side effect, but when I asked our pharmacist about the possibility, he said that it is reported by some patients. I've had tinnitus for so many years...

You'd also have to cut out every source of potato starch in prepared food if you eat it—it's in lots of stuff because it's a cheap filler and sweetener. I knew inside three days I'd probably found my bête noir, and I was certain within six. If you can't digest something there's no need for...

I have, only mine was four years! Long story short, I abruptly lost the ability to digest potato starch. I went through various exclusion diets, but I didn't think of potato intolerance because I'd never heard of it. As soon as I twigged (thanks to a horrible cold virus and a multipack of...

Might be a bit too late, but I wonder if the ME Association would agree to do one of their regular polls on reasons for not returning a spit kit? Or whether a Twitter/X poll would be worthwhile? It would be interesting to know the reasons for some of those kits not being returned. Some...

I think the theory was at least partly inspired by the subset of people who've experienced overnight remissions. It's happened to me twice, and it is odd. That doesn't necessarily mean it's significant, and even if it is there are other potential explanations. Having since experienced the...

That sounds promising. It's the sort of thing a pharmaceutical company might be interested in when they've got a very expensive drug but a rather limited potential market. If it turns out there is a reasonable case to be made for a trial, it would be in their interests to get behind it.

I find that, as my physical health "improves", my brain symptoms always get worse. There is a small but real increase in my physical capacity sometimes, but there's an additional factor: my PEM threshold also rises a bit. This means I really can do a bit more, but I can also overstretch my...

I just snorted my drink down my nose at the thought of what the conspiracy theorists will make of this! Bit seriously ... it does sound extraordinary.

@MSEsperanza has highlighted one of Brian's modules: https://universityofgalway.instructure.com/courses/8163 It ought to be an excruciatingly embarrassing read for people who're paid to weigh evidence and inform policy. They had this crock of shite right under their noses for decades, and...

Thanks to David, Brian and Steve for a great article. It's interesting, isn't it, because in this case there has been no breakthrough discovery. The paradigm shift was the decision to read the evidence, and the scientific revolution is that there is no evidence. I half-suspect there's a...

And in other news, my PIP review form has just arrived—hoorahh! I don't actually mind the form so much, it's the hanging on the chuffing phone for three hours to demand an extension because it took a fortnight to get here after they texted to say they'd sent it. :muted:

The theory seems to go that cells which are in a metabolic trap can be released with the right stimulus. So if the right drug is identified, presumably it wouldn't need to be taken long term anyway. I don't know how likely it is that the trap idea is correct, of course, it is still a theory at...

I was advised by the NHS to test on at least three consecutive days if I started having symptoms, so they could make a judgement call about antivirals. I don't have any details about the reasoning is behind the strategy, but that's what they seem to be saying at the moment. The rapid tests are...

Oh, it's much much worse than that. It's 20 metres. It used to be 50 metres under the old benefits assessment, Disability Living Allowance/DLA. The idea behind changing it to 20 metres was that it would disqualify practically everybody able to stand. It hasn't had that effect because of the...

I was diagnosed with this, but as far as I know it's the form that only affects teeth. It was suspected when I started losing some of my permanent teeth in my teens. I'm going back decades, so there were no genetic tests, only X-rays. I've only become aware comparatively recently that there...

I've had the illness that long, but not the diagnosis. That took over 20 years. But by then I'd worked out I wasn't going to recover permanently anyway (I'd had remissions but then relapsed again), so it came as a relief to have a name for it. My auntie lived with the same symptoms for longer...