I can sense your frustration, it is infuriating isn't it, I am so close to screaming at somebody but that will not help!!
Has anybody got an information card or small handout that explains the basics like 1. ME/CFS is.... 2. I need extra help with/can't be expected...
ACT.
Pretty sure the FDA just made this mandatory, for at least a certain category of trials (sorry can't remember the source) *in the US, obviosuly
Just wanted to report back on my air fryer adventure. I am glad I got it. I am much more likely to split up some brocolli and chuck some other...
https://www.kingsfund.org.uk/blog/2022/09/facing-long-covid?utm_source=The%20King%27s%20Fund%20newsletters%20%28main%20account%29&utm_medium=email&...
Which in SOME circles would seem to count as overwhelming evidence. I asked!
Clinicians said most of their users didn't like it much
I have recently learned that the breathing symptoms I attributed to ME may be due to asthma, and my uncontrolled asthma could contribute to the...
Lunaranbows did getting dx with ASD and sensory processing disorders help you in any way? I've suspected I am ASD for years and recently did a...
Yes this DWME /= patients thing is a huge red flag, they are not OUR doctors, and I thought were marketing themselves as fellow advocates. Also,...
Is there a resource describing how 'patient and public' representation was included, experienced (by patients), perceived and received, how it...
Aren't they a member of a consortium of ME charities (possibly including the S4ME)? Can the consortium address this as a collective concern?
This is so disappointing, the group may be able to achieve so much if taken seriously. I was also offered some sort of fellow type role but gave...
I think I have more mental energy left when I am in a place of acceptance as opposed to the times when I am angry or in denial about it all. This...
I was thinking if the nurse practitioner does think it's worth following up I might try a mouth piece and pay for that myself, while waiting for...
Maybe I should just say "yes I am sleepy all the time" and I have been known to snore, although its been 3/4 years since I shared a bed with...
This is exactly what I am worried about. Any ideas on how to approach it with medical professionals?
The Epworth Sleepiness scale is used to assess likelihood of sleep apnoea, and I find it confusing. I rarely feel 'sleepy' or 'drowsy', I have...
I was just about to suggest similar - replace "yoga" with "water" and I suspect similar results
Separate names with a comma.
