Search results

@DigitalDrifter @Yann04 @Utsikt I assume you're aware of the noise cancelling headphones/ear buds - Bose etc? We have a few threads on those I recently got the Bose QC Ultra & they're amazing, an absolute godsend

@Eleanor i do seem to remember that the AR1 was recently changed, Benefits and Work wrote a new guidance on it. I cant remember what the changes were (this is in terms of guidance in filling it in) but they seemed important, so I'd recommend checking their website Good luck with it all

So you're not necessarily talking about severity, but rather the repeated lack of return to baseline after PEM?

This

MEA comment on it in their dx booklet (page 13) Diagnosis-of-ME-CFS-The-importance-of-an-early-and-accurate-diagnosis-APRIL-2022.pdf

The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same - PubMed Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey - PubMed Havent checked either of them for reliability etc (lol not that i'd be best person...

I always lie with passenger seat pushed fully back, and fully reclined, then i have several cushions in the foot well to put my feet & lower legs up on. Multiple cushions of different shapes & sizes are the key to getting comfy. When we stop (i have to stop for 5-10 mins every 15mins of...

Awww thats so nice, I just assumed you meant Dr S thank you for the encouragement, it makes my day to know i been of some help, some use to someone :hug: There's so many people on here that have helped me so much, there's people here whose comments have kept me alive, literally. If only i...

Sorry i not been able to read the whole thread so apols if this redundant, but i use silk duvet. I have huge issues with night sweats & also cant tolerate anything heavy. It's been a delight, would never go back to any of the other fillings now. I hvae a cotton cover on it & then the coolmax...

I somehow managed to miss this thread till now @Aldebaran's Star, sorry about that. I'm so glad that we have helped and that Dr Speight has been helpful, that lifts my heart no end :) I agree, he absolutely deserves an award! A knighthood in my book. As with countless others. I hope life is...

yes this, except intensely urgently irritated rather than panic. I suppose it's a little like panic but has no fear element just the intense urgency... and this, in fact i have described it as 'everything in me is screaming at me to lie down'. I get really impatient with inanimate things that...

This 100% especially bolded bit yeah lol me too. What’s striking is that if Im for example, in a car reclined a bit & really struggling after a journey - just sitting there... it makes me feel so ill that my brain doesn’t even work to tell me what’s needed. Carer who used to know me well...

yes thats what i was meaning. I'm not doing well at explaining myself atm.

Yes a good idea. One thing we could do to move things forward, even if only a little, would be to utilise the factsheet project. When reading the opening post & just glancing through the rest (sorry not been able to properly read it so apologies if i off base here) but while reading i was...

haha I clicked on the thread to find out what a 'decadent' brain was... I had a cartoon of a brain on a chaise longue sipping champagne & eating posh chocolates, in my mind :laugh:

Sorry only able to skim sorry if i missed thie answer. but is there a reason (other than aesthetics) that you wouldnt want to bring one of the ones you know do work well for you, indoors? Have you thought about the possibility of making the recliner you know works, look more 'indoorsy'? I'm...

sorry John, i didnt expain well... by 'the content' I meant whether the news is good or bad for claimants. Obviously it will be bad, I just thought for a moment that perhaps he'd spotted something encouraging for us & that the video was about it. Clearl not. An too ill to watch it or to deal...

delighted to see him posting on the subject, or delighted to hear the content of his video? Guessing it's the former?

yes. I must say i am grateful for your posts Yann, I often think 'yes thats exactly like me' & it helps so much, especially with the stranger phenomena like this.

Nora Batty anyone? TBH the whole BPS thing is Compo level daft, if only it were as amusing. Ignore this post if you dont know what it means it's a ref to an old uk tv show where a man with daft ideas also kept a ferret in his trousers