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OK, I understand, so what you mean is a deterioration with a clear trigger. Many of my steps down during the 10 years of deterioration had a clear trigger, but some didn't. One of the worst was triggered by being exposed to unbelievably loud building noise for about 20 mins - like your...

Totally reasonable assumption. Don't worry, it's confusing! They were talking about two different jurisdictions, and calling on both the Irish and UK governments to fund research, even though where he's from (Derry) and where he lives (England) are both in NHS-land. In terms of healthcare...

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 the UK, and so would not apply to Northern Ireland, where the NICE guidelines would apply. But in practice, Irish clinicians always have an eye on the...

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 experience first, and then ask a few questions. My experience: After a year and a half of improving and 6 months of being essentially recovered, I...

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' sentiment of "Be careful what you wish for", I don't think this particular quote definitively tells us much about the direction of the guideline. That quote...

As the National Director for Clinical Care, Dr Siobhan Ni Bhriain seems appropriate to lead the development of our guideline. She describes her role as: Integrated Care is defined here: I note that she is a Consultant Psychiatrist for Older People, on secondment to the HSE role since...

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" to the concept of ME as described in the IC primer. This is a concept that says to them, "Yes, you are really ill, and here's why". Of course some...

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 guideline to think that all Irish patients want their condition called ME or think that they have abnormality X, Y or Z. Cynicism and disbelief...

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 for me - I think they'd have a great summary of how I am. I gave the primer to many doctors for a few years. But when it comes to the...

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 that patients will be represented by a group that thinks separate guidelines for ME and CFS are appropriate - I think patient input to the guideline...

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, getting up and down and up and down brings on OI symptoms horribly.

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 the floor/ground and moving around.

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 floor or bed asap. So I think OI and balance are different things for me, but obviously when I'm actually fainting due to OI, balance goes temporarily...

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 down. Lie down to do anything cognitive.

Oh! I left out the actual near-faint and faint symptoms, which comprise a very quick escalation of all of the previous symptoms especially really bad nausea, sweating, shaking, tingling lose feeling in and control over limbs/body generally rapidly lose more vision a kind of semi-blind or blind...

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 before ME/CFS, I had some degree of orthostatic intolerance. It manifested as inability to stand on trains in the morning, feeling rotten in baths and...

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 patients temporarily feel better/worse/worse in a different way/what way than GWI patients after exercise? Very interesting to see how similar the...

Regarding the tired-and-wired experience, a BBC article about sleep caught my eye recently https://www.bbc.com/future/article/20250131-how-the-brains-blue-dot-regulates-your-sleep. It's about a little part of the brain called the locus coeruleus, which the NIH is interested in in ME/CFS, for...

Where was the copy editor? "X (plural) are (plural) a (singular) unifying diagnosis (singular) that includes Y (plural) as well as the unifying construct (as opposed to a diagnosis?) of Z." And then the paper is about Z. I think they just wanted people using any of those three terms to find...