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Thanks. Yes, I thought about pre-emptively resting. I feel in some sense this is could almost be 'hormonal' - perhaps cortisol-related.

Anyone else? It's like that afternoon slump that affects many people but much much worse. For me, it occurs around 4 pm and lasts until around 7/8 pm. Everyday. I often go back to bed but very rarely sleep. I've not found anything to help. It's only on the occasional 'better' day that I don't...

An evergreen response. :grumpy:

I think she did have cognitive and neurological symptoms. If I recall she couldn't read for a while. It is worth re-reading her essay on becoming ill, because it's very good. https://www.newyorker.com/magazine/2003/07/07/a-sudden-illness

If her written accounts are an accurate portrayal of her illness, Laura would have been classed as having moderate M.E (with some severe episodes). It's still astounding that someone can be ill for decades and then have a decent 'recovery' after 25 years.

I genuinely don't understand how changes to the brain can be non-structural. Functional doesn't exist. At the most basic level, everything functional can be reduced to the structural. What they mean is they can't see any structural changes.

Yes, I have no access to a printer. No library. No home printer. No relatives with a printer....

Oh yes, I'm certainly doing everything electronically. I wouldn't dream of handwriting the form - it's such a disadvantage to do so. My only issue now is that aside from not being able to gather my supporting evidence, I can't print the e-form and my answer sheet. PS Thanks for all your helpful...

That's a good idea, to use a fatigue scale. I really cannot be bothered detailing the minutae of my life and each and every symptom, especially when day-to-day variability is limited with regards to activity.

Has anyone submitted a diary along with their ESA/UC or PIP form? I am struggling with what to write and include. I've seen some PIP diaries explicitly based around the descriptors, which is of course a sound idea, but I've decided not to go down that route, and instead just give an overall...

I just saw this on the BBC website: https://www.bbc.co.uk/news/uk-england-london-52151662 It features Paul Atherton, who lives with ME/CFS and sometimes posts online about his illness ( https://en.wikipedia.org/wiki/Paul_Atherton ) Must be an awful situation for him.

The 2007 review used CFS/ME. https://www.nice.org.uk/guidance/cg53

Oh yes, I've kept it, and have had the idea to do a blog post on it sometime. Just need to get round to doing it.

I had the misfortune of being diagnosed by Tim Peto in 2018, who was then (and still may be) seeing ME/CFS patients in Oxford. I left with a recommendation to "do fun and frivolous things" and "do things badly on purpose", together with a sheet of paper with "Lightning Process", "Trudie Chalder"...

The ceiling is for the council tax award (also known as council tax reduction), not the actual council tax bill. They took around £400 off last year due to my income levels and claiming UC. This year they have taken off about £700.

UK I've just checked my council tax bill and it is significantly lower than last year's. This is because the Tory government brought in a ceiling on the value of any council tax award (dependent on benefits etc.). If I recall correctly, this ceiling has been removed for the next financial...

"There is increasing evidence for the role of neurologists in both the assessment and management of FND" SHOCKER.

It sounds like the illness was particularly bad for her. Or maybe because she is older. I hope Claire now realises what being absolutely exhausted on top of feeling like death feels like.

This iodine salt pipe thing is the most bizzare crap I've ever seen - perhaps more bizzare than crapping yourself from taking 100 grams of vitamin C. I thought it must be something popular in the alternative medicine world, but alas, it seems it's just a Myhill thing. She states in the video...

The consensus seems to be that this is likely the only benefit. For non-infected persons, it seems the small benefit of the mask is largely due to reduction in hand-to-mouth/face contact.