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oh goodness! no! I dont do a full order 20-30 items, but most weeks i have only a handful, and I usually have help with it in any case. But my cognitive difficulties are such that I wouldnt remember, or indeed be physically able to, for example pick up a bag of ready prepped salad from the...

I honestly believe the term 'sensitivities' has set us back in the attempt to get others to understand. Certainly in the uk it conjours a picture of a person who is frankly a bit wet, needs to toughen up, & those 'sensitivities' is something that staff really dont need to bother with - oh well...

I think this is crucial, and infact it should possibly accompany every other document, or at least be referenced on it. Because that is one of the key (not not obvious to the outsider) underpinning principles on which this is all isbeing done. I'm afraid I agree. Its some kind of 'info on ME/CFS...

actually not strictly accurate, i dont wipe everything because i am nowhere near well enough. Fridge/freezer items get wiped by eother me or carer, & cupboard stuff gets quarantined for a few days, ideally a wk before being touched. Perhaps this wont be as good for norovirus maybe takes longer...

Seems sensible... in similar way to what has been done for letters etc previously. Better to have realllly good results that take a little longer, than to rush it. Particularly if it's to be 'S4ME' content.... it needs to be inputed into by as wide a membership as possible, at least at the outset.

This exists already, the guides from BenefitsandWork are amazing & the MEA guide to PIP is also excellent. But we could have a useful signposting document. This would be brilliant. Especially something with info about sensory "sensitivities" (hate that term!), to explain to such as ward sisters...

I also use HA formulated products, called DEW, been using them since before the beginning of the pandemic & I use all their products, they do a range of pet care things too, & the air sanitiser is amazing too in a really fine mist. We have a thread here where i was asking if the claims about HA...

The challenge with that is that it will likely be assumed to mean that its a blog about the experience of living with ME - ie just insights into the condition. Your blog is unusual & hugely needed to be read, by everyone & it's a lot more/different than yet another PwME discussing/sharing stuff...

I agree But also Simon M's comment about you being forensic in your examinations of studies.... So how about ME/CFS Forensic or ME/CFS Forensic Audit

Sorry not up to reading the thread so perhaps this been said already. When i first came across you & yr blogs I steered clear because i thought you were someone who was skeptical OF ME/CFS. Then I kept seeing yoU & was curious. Soooo glad i investigated! But it really depends on who you care...

sorry you had it again Kitty, hope recovery is swift & uneventful. What amazes me is that everyone i know, except for most PwME (at more than the "mild" level), simultaneously thinks covid is "just a cold" AND, that their snotty nose & sore throat cant be covid because what they have is 'not...

just in case it helpful to anyone - diphenhydramine is used in uk for sleep too, product name Nytol. I find it helpful for occasional use. 2 types of Nytol - one is herbal & useless (imho)

be VERY careful if the rec spray foam roof insulation. it makes it impossible to sell yr house! too ill to say more, google it if need more info I'm in hell wit it

no strength to reply properly atm, but this is all massively helpful thanks so so much! Is WebMD reliable then @Sly Saint ? I always hear it talked of when ridiculing people with 'cyberchondria' wish i were well enough to explain & say more but you've helped me more than you know :heart:

Hi am planning to try taking 5-HTP, it's not for ME/CFS but I searched it on here & saw a few people mentioning it. I'm too ill do any proper research or read poperly, but after a brief google i saw a few alarming things, but am VERY fuzzy mentayll so i cant assess. Asked phramacist but he...

oh, duh, sorry to be so out of it. This mag i reading is autumn 24 yes thats it thank you. Sorry i missed it making effort for people thanks pointing it out. Thanks for the link. I too ill to read open letter atm, will see if can get to it. right now i just happy others are not happy about it...

I'm too ill to read the thread, so pls forgive me if i repeating what is all old news now, but i only just a few days ago been able to read a little of my latest ME Essential magazine. It's got one of the most offensive ridiculing editorials I've ever read, on page one. I'm sorry i cant copy it...

:) Yes, interesting. A friend was the other day saying how exhausting she finds travelling on the train. I guess it seems different to me, because while being a passenger as a healthy person used to be a little soporific sometimes (during the actual journey i might doze off if it was also...

Gosh. So looking at 'energy' use in any usual sense might be completely a red herring?! Wow.

Ah, yes I see what you mean. I think thats something I havent understood. At all. In my 'lay' mind, and from the point of view of my experience of ME, where it all - all activity = exertion. So cognitive, physical, sensory - it's all 'exertion' and all provokes PEM either individually or in...