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I agree, everyone here's been very respectful. I was responding to the thought about letting people know about this dreadful outcome; what I meant was that, if the family wants to put the word out in open forums such as social media, they should do so themselves. The story would then become...

I agree, but you're right in that it doesn't capture the additional symptoms. For me at least, there are symptoms that only appear during PEM: for instance, being awake all night with a speeding brain, needing to pee every 30 minutes, and having painful joints, swollen throat glands, and burning...

I agree, but the patient and her family should be allowed to write it, since it's their story. They've already posted in detail on the blog, and may comment again in more widely-read forums when they feel ready.

I don't imagine it's causal, but massive candida overgrowth preceded the onset of my ME by up to a year. I had candida pretty much permanently until the menopause; I still get skin fungus if I eat white bread, though.

The loss of Erasmus is devastating. I'm really sorry to hear about the loss of your job, @Ryan31337.

Absolutely. In an attempt to offer a bit of positive info, one of the auditors at my former workplace developed involuntary jerking and twisting in her neck and head after a car accident. I can't remember the name, but it was a recognised condition. The neurologist treated it successfully with...

From Disability News Service: "Thousands of disabled people could have had their benefit claims stopped unlawfully, campaigners believe, after a judge found that letters sent out by government contractors were failing to stress the serious consequences of failing to attend a face-to-face...

Interesting. I had a course of high dose clarithromycin at the beginning of this month for a large abscess. As well as sorting out the abscess, it seems to have righted whatever was causing the IBS I've had for six years, and the drenching hot flushes I've had since 2005 every time my bladder is...

Gosh, that's awful. Let's hope she improves as she recovers from the surgery.

Indeed, and it's pretty useless as an indicator if you also have arthritis...

Lovely. And no bright colours on the screen that you have to cover up before you can start reading...always a bonus!

It's especially hard to estimate the prevalence now they've discovered someone with an active infection but no symptoms of illness. It's therefore possible that people can spread it without even knowing they have it. I agree it's not worth worrying at the moment, specially when you think about...

Yes, possibly. I didn't even know ticks existed until years later, and it was probably the early 2000s before I'd heard of Lyme disease. If one of us had found a tick, we might have asked about it; as it was, I assumed the rash was a scrape from scrambling hillside scree or climbing up rock...

Thanks to @Michiel Tack for this work...and thanks to @Peter Trewhitt for elucidating how my brain works! :rofl: I'm frustratingly unsure whether I or not was exposed to Lyme, but because of that, I'm interested in the topic. I've always found debates about post-Lyme syndrome a bit suspect –...

Me too! Most people learn to compose written work in childhood, without really being aware of how long it takes to learn to do it at reasonable speed. Dictation is every bit as much of a skill, and I think anyone who's not used to doing it would struggle to compose more than a sentence or two...

I don't have problems sitting up unless I'm already crashed, but I really struggle with leaning forward to plant things in my raised beds. It's bizarre how much difference a relatively small change of position makes!

Me too, until I was finally diagnosed in my 50s! :laugh:

I found speech to text much more tiring than typing, specially as the applications seem to be trained mainly to understand American accents. (These are somewhat thin on the ground in the part of Yorkshire where I was born!) It takes so long to keep repeating the phrase until the software's...

Me too, I became ill at 17 but wasn't diagnosed until many years later. It didn't help that I'm autistic, and hadn't learned to talk with doctors very well (I lacked 'theory of mind' until well into my late 20s). I'm a renter living on benefits, but it's not the reason I stopped using a...

It's excellent news, isn't it – very encouraging. This is true, but so far no money has been available to spend on publicity, and I don't think GP practices or hospital clinics have been approached yet (it's too early to get them on board). I think if the team can utilise these channels, as...