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OK that's interesting because I assume from the UK that the focus was very much on the 'covid' and trying things that 'saved lives' , maybe some useful stuff from the clinics that included people who had heart, lung etc siphoned off for research and treatment in the 'long covid' larger category...

Of course I'm just blown away by the fact that it seems the same issue that means real treatments aren't being invested in - too much risk whilst we don't know the mechanism, which I assume is partly due to harm potential? and maybe some due to them not being able to predict whether it will be...

Thanks for posting. This seems a good development given she was involved in the parliamentary debates on ME/CFS too wasn't she? I've read the article and get a sense these are relatively important things but if anyone has more knowledge of the actual impact these things can make I'd be...

Can you pass on my thanks to Karen. I've one of those weeks, including today, so it's a short reply. But a quick read through am highly appreciative of her reply

Nudge

I don’t think it should be seen as an unpopular view. I suspect that most of those with experience are worried this is naive re some of these names as we’ve seen what has happened before, this isn’t the first ‘gizza nother chance’ which those doing this means they should be aware it’s not a fool...

Agreed. I'm worried that I'm seeing people who would need to change their model on here and wondering whether they were potentially signing thinking they would offer some/all of these additional things - which would really not be a good idea. I guess the phrase is part of the problem. Enough of...

I like this sort of thing, only if to remind people that sometimes you do need to step back and realise a lot you think you know as sure is actually only assumed, in order to end up reconfirming it after walking through it all again. It's a healthy process to do every so often. this just would...

OK now I'm getting into theoretical land but a test that is somewhat diagnostic would be interesting because we could look at what other diseases are actually common comorbidities without that 'maybe the fatigue is caused by x so y doesn't exist' type issue. Which I think is also potentially...

Agreed. I think there is a massive line between having it as a defined discussion for other things vs allowing these things to sneak in using the terms treatment, which feels like those doing it there is a bit of an agenda behind it. Even the article says Quality of Life, and it isn't any kind...

There is one editor for this special issue it seems: Prof. Dr. Cleofas Rodriguez-Blanco Guest Editor Physiotherapy Department, Faculty of Nursing, Physiotherapy and Podiatry, University of Seville Interests: physical therapy specialty; rehabilitation; coronavirus infections I hope that this...

Moved from above post for length. This is in the title part: So whilst these things on their own perhaps can't be defined as harmful - because someone interested in it can research if they want etc - the fact it is in this 'special issue' is a major different kettle of fish altogether. We...

I'd like to know more about why people are doing this sort of thing trying to push these things onto people who have serious illness. I know that for cancer there is some movement towards having things like massage or other therapies to help with the stress of going through treatment, but there...

Moved post I've just found the following: Info-Guide-2-Care-and-support-planning-for-personal-health-budgets.pdf (peoplehub.org.uk) there might be others that are good and worth putting on here or the other thread, as this one focusing on the personalised health budgets, but is a useful...

If they use this to diagnose then we have a real issue. Because it is a great way given the PEM description of filling the ME/CFS category with loads of people without PEM. WHich would be the natural tactical reaction of people who built a career on research that used the wrong definition of...

they can't be that dumb, and neither are the MEA - this is what/how the illness can 'exist' that is being put down here. It is really serious stuff. And then they make it even more serious by saying it will be used for all sorts of other things, taking away other mechanisms for explaining what...

and things that just happen to be on the list of what they want to deliver claims to cover..

It feels like a way to end up justifying the PPS 'cos it's all caused by the mind they get random symptoms' clinics and 'fatigue, manage your energy levels' clinics not to measure ME/CFS. So the PEM wasn't built-in to their design of the way they have administered this process of...

There is clearly a problem - which should have been fixed - that rather than like all other medical conditions things making sure they fit for and help those who are most severe and ill as the priority, we have something being built around the 'least'. It's unacceptable and really unhelpful for...

This set of questions is very important because it is the cardinal symptom - the one bit the 'new' is supposed to be wholly rejigging everything to focus around that penny-drop. And this is a missed penny-drop at best and a begrudging nod to include the word as an add-on at best. This team needs...