Is it? We haven't seen it yet. But yes, I fully expect it to be a disaster.particularly in light of the delivery plan being even more of a disaster than we could have anticipated
Is it? We haven't seen it yet. But yes, I fully expect it to be a disaster.particularly in light of the delivery plan being even more of a disaster than we could have anticipated
Thanks, spoons going rusty, shrinking and rapidly running out.It is extremely hard to deal with, so appreciate you using your spoons to keep on this so very eloquently.
Thanks, spoons going rusty, shrinking and rapidly running out.
I haven't seen it, but it has taken 3 years, had 3 delays, has no planned publication date, no firm commitments and no fundingIs it? We haven't seen it yet. But yes, I fully expect it to be a disaster.
We've seen a number of times that when things are delayed, it has been due to the BPS people trying desperately to pull strings behind the scenes.. (e.g. NICE Guideline, Cochrane new review of exercise treatments, probably the MAGENTA trial)I haven't seen it, but it has taken 3 years, had 3 delays, has no planned publication date, no firm commitments and no funding
We've seen a number of times that when things are delayed, it has been due to the BPS people trying desperately to pull strings behind the scenes.. (e.g. NICE Guideline, Cochrane new review of exercise treatments, probably the MAGENTA trial)
What makes you think that's changed?and still saying most doctors in the UK believe the BPS model where "persisting ill health is largely maintained by maladjusted behaviour and unhelpful illness beliefs", and some believe it's psychiatric, but CS and the MEA believe it is physical.
What do we know about the causes of ME/CFS
A badly outdated MEA 3 page article by Charles Shepherd dated February 2020, so pre NICE and pre Rituximab results, and still saying most doctors in the UK believe the BPS model where "persisting ill health is largely maintained by maladjusted behaviour and unhelpful illness beliefs", and some believe it's psychiatric, but CS and the MEA believe it is physical. There is a summary of some of the biomedical findings and hypotheses current back then, including brain, muscle and immune abnormalities.
What makes you think that's changed?
Call for oversight and scrutiny re Open-OH 08-06-25
do you have a source for this?Call for oversight and scrutiny re Open-OH 08-06-25
A letter to Charles Shepherd at the MEA submitted on the MEA contact form. He has asked on Facebook for feedback on it.How can I best tell MEA how misguided this effort is?
I had to delete the app - was making my blood boil that money can be found for frippery like this. There isn't any help for pwME, except the hope that scientists will be allowed to discover what's really going on; pwME know this; scientists know this. So how do human affairs end up being led by donkeys?Have you tried the part where you are supposed to be able to put personal symptoms and CFQ scores? I couldn't work it out.
I just sent this:A letter to Charles Shepherd at the MEA submitted on the MEA contact form. He has asked on Facebook for feedback on it.
The sad truth is at all human affairs are. Everyone is out of their depth and winging it all the time.So how do human affairs end up being led by donkeys?
Visible Free Version for example, along with Apple health for heart, steps, or a free app like bearable for symptoms etc and wearable = pre-set reports.Deleting seems the sensible option.
What bothers me is there could be a much better app that pwME could link to any wearable they have to track steps, heart rate etc, with easy to record symptoms, severity level and FUNCAP data, and meds to track their own data as theý choose to, to help with pacing, and for use as outcome measures in treatment trials.
What it shouldn't be is pages copied from assorted stuff that's readily available online and much of which is wrong or useless.
And what it absolutely shouldn't have is any connection to the DWP .