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It seems to be part of a series on chronic pain called The Pain that Can't be Seen, which I think started this week.

Most daily living activities are actually a whole series of steps when you break them down, and that's the problem. I usually know from experience when I can start but not complete an activity such as showering without making PEM worse; I also know that if I start, I probably will complete it...

Had my F2F appointment today. I do appear to have lipoedema, but possibly not Dercum's, which is interesting. Some of my lipomas join up to form rafts, and this apparently may just be a feature of lipoedema. There are a couple of areas I get lipomas that aren't typical of lipoedema, but it...

Radio 4 has been promoting some recordings by CBeebies to help get children to sleep, which are called Calming Sounds. I tried listening to the sound of waves one night when I felt a bit overstimulated, and found it quite nice. Which sounds are pleasant vs unpleasant is a really individual...

We're normal human beings? Well, fancy that. ETA: Sorry, feeling sleep deprived and grumpy today!

I've been wondering what the new approach will be, given that the draft guideline only makes recommendations against treatments. That's sound enough, as we don't have any evidenced treatments, but it leaves patients in a zero-option limbo that's particularly difficult for the newly-diagnosed...

As a non-medic, the only thing I can think of is that ME appears to affect our bodies' ability to process sodium and simple sugars. Some of us suffer low blood pressure and fluid levels, and have to increase our salt intake to compensate; many report that consuming sugar seems to make their...

My resting heart rate is elevated slightly when I'm in PEM (I alway get immune-type symptoms and overstimulation), going from around 55-56 to 60-62. Not a drastic difference, but the RHR increase often appears ahead of the PEM and serves as a useful signal to go straight into rest mode. In my...

I saw another online comment yesterday from someone who (like me) found their function restored temporarily to normal after receiving the AZ vaccine. There does appear to be a subgroup of patients who benefit significantly from stimulation of their immune system, either after a vaccination...

Years ago I used to go on group hikes with a trigeminal neuralgia sufferer, whose pain could be triggered by any light touch on his face (including wind). Battling against a freezing easterly on the Yorkshire coast didn't seem to be a problem; he always said it was more likely to be set off by a...

I don't know, but at least I haven't had any ME-type disbelief from doctors about the symptoms I get if I eat potato products. Food intolerance was suggested to me as the most likely cause by the consultant at the gastrointestinal clinic I was referred to, as I'd had sudden-onset severe IBS...

I agree, it was! I find podcasts so much easier to access than videos.

In my experience it's employers, channelled through patients. Employers expect sick employees to Do Something to improve the situation, and so the employee is pressured to go back to the GP, who in turn tries to help. One example (of many over a working life): about 12 years ago I was signed...

Listening to it in instalments this morning. For anyone who finds certain electronic music tones physically painful, just skip the first 45 seconds (you won't miss important content). The music's hideous, at least to my autistic brain, but the spoken content is really clear at low volume and...

I wondered whether this was the best term, but I'm not sure. Partly because it may not translate culturally and linguistically, and partly because the original meaning was specifically about manipulating someone psychologically into believing that they're insane. In the case of people with...

But on the other hand, if I kept telling the world I went swimming last week and it was my enormous determination and strength of character that stopped me picking up the verruca virus from the changing room floor, at least everyone would know I'm so stupid that I ought to be sidelined...

Absolutely – they don't want to pass it on to anyone if they can help it, which is another reason for letting everyone know that the symptoms could be mistaken for a cold.

I think a lot of the transmission is between younger people and children, who usually wouldn't be made seriously ill by any of the variants. The problem comes when they encounter someone more vulnerable, whose vaccine protection hasn't worked very well. The publicity is because there's a...

Merged thread - Delta variant Covid symptoms ‘include headaches, sore throat and runny nose’ Title says it all, really – here's a Guardian article suggesting the symptoms of this variant may not always be recognised, especially in mild cases affecting young people...

#4: Downstream effects of upstream corruption