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Yes, I think we all agree there. However, we want to keep on-side the GPs and others who have simply followed the guidelines. If GET & CBT could be dropped from NICE then everything would get easier. We are not there yet.

I worry about this notion of “perceived fatigue” or “perceived effort” being used anywhere near ME (or any illness actually)! The body gives sensations of fatigue (and pain too) for good reasons. Something is broken. So the body needs to be protected from doing further damage by over-using the...

The lay member applications closed in June x Edit - or was it they opened in June and closed in July? Think the latter actually.

@JoanNI See above. Another person worth contacting re Hope conference? https://pure.qub.ac.uk/portal/en/persons/mike-clarke(f6bee3f9-d4fd-4498-b28b-1e52b1dfaf91).html

From website linked above: Team Foggy no longer fundraise for the ME Association but this is what we do. Foggy’s adventures will continue! On this page: https://www.mefoggydog.org/about-me/

A long harrowing read. However complaint report gives hope for better care in future. Well said Christine Fenton. http://meadvocatesireland.blogspot.com/2018/09/complaint-report-offers-hope-for-those.html

The trouble with studying harms of GET, are that: - Those who believe GET causes no harm can carry out studies, but they are not careful about looking for harms, because they don’t think they exist. (And patients don’t trust them to properly record harms). - Those who believe GET causes harm...

The trouble with studying harms of GET, are that: - Those who believe GET causes no harm can carry out studies, but they are not careful about looking for harms, because they don’t think they exist. (And patients don’t trust them to properly record harms). - Those who believe GET causes harm...

It’s almost getting to the stage that any slur they hurl at us, is effectively an admission of their own guilt of that very thing. So they say we are intimidating them? Likely that is exactly what they are up to themselves! There is a name for this I think. Projection or something.

I’ve tweeted the author, just to see if he expresses any opinion on MUS & IAPT

However this should also mean she could be resistant to pressure from the BPS cabal? Unfortunately she seems to see them as being “right” - not sure why.

In some ways it’s a simplification. Each patient gets one of four management options. Part of which might be managed by the secretaries behind the system (referring to others etc). AND if it could counter the slick MUS/IAPT machines then, honestly, I’d not object to jargon. If the letter...

Sure a load of stakeholders said GET should go, but NICE themselves haven’t yet changed their recommendation for GET. Sadly.

Agree, to some degree @Trish However, if a “process” is required to replace the IAPT & MUS processes, then I’d rather support something like this. ;)

This came up on Twitter, and although it mostly relates to diabetes, I thought a process like this could perhaps be useful for ME patients. PROVIDED - OF COURSE - THE CARE WAS NOT BASED ON PACE-STYLE CBT/GET...

Nope! Not a bother with this for me! :geek: Slices of butter; hunks of cheese; double cream; never trimming the fat off bacon; loads of mayo on salads! I LOVE this way of eating! Seriously, I no longer miss the sugar, or the bread or any of that high carb stuff. (Okay, I still love the smell...

In USA the total carbs would be recorded as 22g. Ie they add the fibre to the carb count as well, whereas here in UK fibre is not added in the carb figure.

The drug I took, is a reverse transcriptase inhibitor. So maybe there is something still to explore?

Absolutely x However I do know of others who improved. Also others who didn’t. So yeah nothing yet that is sufficient evidence.