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Aaaaaaaaaaarrrrrggghh! But, yes, there is some good stuff in there.

...or a distorted sense of smell (parosmia). “Sometimes this is described as a smell of burning rubber, a pungent chemical smell or raw sewage,” said Prof Carl Philpott, director of research and medical affairs for Fifth Sense, a charity supporting people with smell and taste disorders...

It's projection all the way down with these clowns.

The Swedish medicos really are desperate to justify or distract from their failed herd immunity COVID plan.

See point 6: ...and accessing social care programs (e.g income support, suitable housing, various living aids like wheelchairs, etc, as required), and medico-legal support (including supplying individual patient advocates, where needed).

Besides my initial comments, I have not been able to sink my teeth much further into it either. Basically bad timing with life admin stuff outside the forum, plus a short window of time to comment. That said, I have read most of the main document, and some of the threads looking at individual...

:emoji_musical_score: Just got those bad timing blues :emoji_microphone: :emoji_saxophone:

Besides the reasons already given, I think a huge part of why is because the BPS school has been very successful in planting the idea, across society, that patients should not be in any way encouraged or even allowed to see their problems as biomedical. Obviously that includes not encouraging...

Thank you @Brian Hughes +1 A beautiful and thoroughly deserved smack down. The only honourable path left for the guilty is to resign and find alternative careers. Might I suggest toilet cleaner, under adult supervision, of course.

THIS! Improvised Dada science.

"BACME supports clinicians to underpin rehabilitative and therapeutic processes with a grounding in dysregulation principles. Just one giant moral vacuum, to the bitter end.

Yep. All patient groups who are stakeholders need to ask for more time. Minimum of an extra month. It is ridiculous that such a contentious and critical document is only getting 6 weeks for feedback. Particularly given the document recognises the various difficulties patients have with reliably...

This fact, plus the unambiguous statement in the draft that there is no treatment or cure, constitute a very powerful scientific and ethical argument in our favour. We should not shy away from pointing that out at every opportunity, nor demanding that those who dispute it justify their...

biobehavioral Is this the latest version of psychosomatic?

Many excellent points. Thank you, MEAction. :thumbup: Two points: Yes and no. To be diagnosed with current definitions requires at least a 50% reduction in activity capacity, which is already very badly affected, devastating even. That might be fine for a tighter research definition trying to...

Kirsten is correct. A huge problem with this draft is that the vast majority of the current crop of ME 'clinical experts' in the UK are so compromised by their track records it is impossible to have any faith that they will deliver what is required. Surely admitting the system has failed badly...

Fucking disgraceful. :mad::mad::mad:

One of the more frustrating and frightening experiences with ME is standing in a supermarket trying to make a decision about which thing to buy. My brain just goes gaga. No amount of willpower or mental exercises fix that. Best option here is to have a list of standard items (and...

What @Esther12 said. As I said earlier in this thread, that we need to ask for more time. This document, and the language used in it, needs very careful scrutiny and criticism. The amount of time we have been given to respond to the draft is inadequate given its complexity and importance, our...

I will believe that when they no longer cite PACE, except as an example of what not to do. Bootstrapping.