They explain why here: Seems reasonable. Then they acknowledge that: I tend to think the bigger problem is the one @Yann04 brought up above:...
Or step on another deterioration landmine. I did not spend 10 years pushing through PEM, but I did spend 10 years deteriorating.
Fluge et al.'s placebo group went from 32.5 to 38.4 on the SF36 physical function subscale in 3 months. The PACE trial's specialist medical care...
Thought it would be helpful to have a record here of the detail of those studies. I put line breaks in to make these quotes a bit easier to read:...
Yes, I'm with you on that notion of "underlying ME". And yes, there are triggers other than exertion for those changes to the underlying...
The 2021 NICE guidelines say this: And I think there's wisdom in advising that anything lasting more than a few days requires adjustment of what...
Yeah, it's tricky, because I'm trying to start from their terminology, to come up with something that would have a hope of being accepted. I...
Yes but what on earth would it say?! I don't think we have a clue because no-one has followed us properly over time. There are a few studies...
Yeah, so there are two relevant bits there: If we stick with their terms (since anything else is swimming upstream), I think this would be...
I agree. Things that were mystifying when I was mild are very clear now that I'm severe!
Gotcha. For me, "permanent deteriorater" conjures up someone who is constantly getting worse, rather than someone who got worse after a trigger...
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...
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...
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