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Just saw this.

I think as a charity tag line "living death" is not suitable, but if media used it instead of say "yuppie flu" that would help. eg: ME, a disease described by the most severely affected as a "living death",. .. . etc.

And this is where a lot of articles become unstuck. Although the person interviewed might give all the right info, we have to trust that the journo concerned will work the piece from our angle. Often the journalist seems sympathetic, but then goes to the various press sources and comes up with...

Or shorter still: "Living Death Disease". I gave a blog post that scary title once, and it got a huge number of hits. So I agree that it has impact. http://sallyjustme.blogspot.co.uk/2014/08/living-death.html I think it is fine to use for the Mild / Moderate too, because it's scary. I mean...

I tweeted a snippet to Jeremy Hunt - for all the good it will do.

Thank you. The audio seems to have had quite a few listens, so I'm hoping it was useful to some. It's an interesting testament to my improved stamina these days that I was able to read the whole 8.5 minutes in one single take. Back in September 2015, when I did the audio for the ePatient...

Thanks for this link. I saw the video a few days ago but only watched half of it. Liked her style, and wanted to watch the rest. :)

Thank you @Sly Saint @arewenearlythereyet and @Invisible Woman for your kind comments. Once I started writing about trust I found there was so MUCH I could write about. I admit I considered tackling the issue of the charities and other organisations in which we are expected to place our...

Hope this is okay to share. I've included an audio version of the post too. "Trust issues run through every level of the ME experience. Being unable to trust our physical bodies to perform, is just the beginning. Trust, in the context of ME, goes way beyond personal, physical problems...

Ah... this I didn't see.... but agree it could be interpreted that way. Hmmmm....

This could be really powerful.

Noticed this. I haven’t read any if it yet.

I tweeted my concern about the phrase “before increasing”. It is “increase” that is such a problem with GET. Todd Davenport has replied that he will bring this concern to the group.

The premise seems to be missing a bit . . . When patients believe their condition has a physical cause, and when they fear exercise, they are much more likely to have an organic disease, and so they are much less likely to recover.

I read that the other way - ie that he was accusing other therapists of applying his therapies in a harmful manner? But indeed I see now it could also be taken to mean the patients deliberately harming themselves - weird idea, I mean why would we?? Edit... Replied before @Joel 's post.. You...

I think the numbers are nested. ie they have included the clinically anxious within the group that is subclinically anxious - "within the subclinical range of health anxiety", so everyone who is that level or more is in the bigger group. I agree of course that their language here is not...

I just feel so sorry for which ever young researcher has been persuaded that this might be a good idea. :(

Fully funded! Yay!

Probably so they can say that high heart rate indicates undue worry and concern about the task. It won't be used to indicate that getting there and doing the activity are more difficult for ME folk, OH NO, it will be used to say we get stressed by being asked to exert ourselves, and THAT is our...

What about comparing to a cohort that are first day out of bed after a full blown 'flu. Might those patients also have feelings about being asked to carry shopping bags for the amusement of some researchers. Might they too use @Trish 's trial acronym??