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Brilliant! somebody sensible is in charge :)

But it must be 'individualised', if we have learned anything these past few yrs it's that all treatment simply must be individualised & agreed apon in collaboration with the patient :D Thats interesting @boolybooly what does your 'mother' do to it that helps do you think? :D

Sorry this is a bit jarring now as the thread has moved on but it felt important for me to respond. Sorry it’s taken me so long to reply @Wyva Reading back through my recent posts on this thread i realise they can easily come off as a bit superior/patronising & implying that anyone who...

I'd like to know why nobody suspects after getting vaccine & developing fever, that they may have coincidentally caught actual covid? nobody seems to be sugesting testing, but after discovering the ludicrous & imo dangerous mask policy at some counties' vaccination centres, theres certainly a...

Thats interesting Kitty, I stand corrected, thank you for sharing. It seems to make no difference to me whatsoever, that must be a right pain! A little bit of 'nice' keeps me going sometimes :) As you say, calling it an 'allergy' isnt very good from a doctor though. Really? wow, thanks for...

There is no spoon. (sorry that will only make sense to fans of The Matrix, but i couldnt resist it).

It reminds me of Vogt's story where he had an over-reaction to his tinnitus &was unable to keep it in proportion/kept obsessing over it - or something like that i dont remember his exact words - what i remember is the assumption that because he had an inappropriate/unhealthy response to an...

from his interview I just dont recognise any of that. does anyone else? - being "frightened" of being ill the next day? I never feel like that, i'm always shocked when the PEM kicks in. Thinkin you allergic to sugar because you ate a lot of cake yesterday? sorry but thats just daft, who thinks...

this.

I'm not pro structural abnormality theory by any means, but just to say that in UK from my experience of listening to other patients, very few people with ME/CFS will have had an brain MRI, much less the neck. Not saying they should have had a neck MRI, just that i'd be astonished to discover...

yes this is how it is for me also, but sound is worse than light for me, light is only very* bad when i'm in PEM, when the slightest chink of light is like a dagger. It must be so hard to be like it all the time. What i cant understand is how sound ramps up the "volume" on ALL my symptoms...

I'm also interested to know what they say about anxiety. I do deal with an unavoidable amount of stress & my HR rises unpredictably then. I also feel physically MUCH better when stressed, presumably due to stress hormones like adrenaline, so a lot of things that would feel very hard when calm &...

I find the moldex foam is quite firm, the Hearos brand are wider but *much softer. If you'd like me to PM me & i'll post you a pair so you can try before you buy xx

I use moldex & also hearos brand, BUT i have to always cut the pointed tips off to make them much shorter, otherwise they are pure agony! So i cut about 1/4 of the length off, so the tip becomes flat & 'blunt' instead of rounded - which turns into pointed when you roll them up to insert. Think i...

yeah the hearts are a bit pukey, especially when you find out what is meant by "support" by the BPSers

how maddening! thats worth knowing, because the delay makes it useless really. I want it to tell me when i go over my threshold, straight away.

@Blueskytoo I want one that i can set so that it continuously monitors my HR and alerts me when i go over 100 & under 60... does yours do that? Also it needs to be able to do that without being hooked up to an app as i only have a very old iphone 5 that i use for necessary apps only. The whole...

From the MEA site So not ibuprofen then? I usually take them in combination for flu-like symptoms so was planning to do likewise for vaccine side effects but the way this is worded suggests paracetamol preferred? Anyone know why? @Jonathan Edwards would there be any biological reason for this?

Thank you! i would have made that mistake :laugh:

From Dr Strain's tweet linked above Dr Strain, if you ever come on here & read this, i just want to say how much i respect and admire you for this comment. It's so easily done to slip, with the pressure of being on air etc, & instead of attacking us & acting like an arse (which is what we...