Totally reasonable assumption. Don't worry, it's confusing! They were talking about two different jurisdictions, and calling on both the Irish...
Just to make sure it's clear: the HSE guideline would apply only to Ireland, i.e. the Republic of Ireland. A HSE guideline would not apply to...
Hi @DigitalDrifter I think I may be one of your tribe, but I want to understand a bit better what you mean by deteriorative. So I'll share my...
While I am on high alert for this becoming a guideline for ME/CFS that resembles the 2007 NICE guidelines, and I share @Jonathan Edwards'...
As the National Director for Clinical Care, Dr Siobhan Ni Bhriain seems appropriate to lead the development of our guideline. She describes her...
And to be fair to patients, I think the cynicism and disbelief that patients face from the medical profession is what makes some of them "cling"...
I agree with you. It's counterproductive. And that's why I wouldn't give the primer to anyone now, and wouldn't want people developing the HSE...
Overall, I like the diagnostic worksheet pages of the IC primer, i.e. pages 7, 8, 10, 11, 12. I would have loved a doctor to have filled that out...
I think it's important to flag the Irish ME/CFS Association as wanting to be involved in the development of the guideline. I'll email you!
Thanks for posting about this, Tom. Well done to the MEAI for instigating this process. That's an achievement worth celebrating. I'm concerned...
Yeah, I have to do a quick calculation of which is worse that day - OI or legs? And then sit if it's OI and stay standing if it's legs. For me,...
I think it's what the tilt table takes away - it takes away your ability to compensate for what's happening by tensing your leg muscles against...
Hm, widening my stance wouldn't stop me fainting. And holding myself up would be the opposite of what I need if dizzy - I need to get to the...
More on how I deal with OI: Need to sit to shower, sit at sink to wash hands, sit cross-legged on bed to do anything that can't be done lying...
Oh! I left out the actual near-faint and faint symptoms, which comprise a very quick escalation of all of the previous symptoms especially...
Just a note before I begin: my account is that of someone with ME/CFS with a pre-morbid tendency to OI. For as long as I can remember, ie long...
I had a look at this. I wish they'd spelled out what the results could mean for patients' symptoms. Would greater activation mean that ME/CFS...
Regarding the tired-and-wired experience, a BBC article about sleep caught my eye recently...
Where was the copy editor? "X (plural) are (plural) a (singular) unifying diagnosis (singular) that includes Y (plural) as well as the unifying...
Clever and careful study. Can't wait to read this one properly on paper.
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