Brilliant, adding my thanks for all your effort and persistence, it must be very gratifying to have it pay off!
I’ve found sage supplements to be of enormous help in dealing with hot flushes, I’m reluctant to take HRT for health reasons but I was seriously...
I don’t generally get out of breath but then I don’t do very much! But I DEFINITELY get very breathless when I’m having a bad(worse)patch, getting...
I have POTS as well as severe ME and my orthostatic symptoms are much worse in PEM, although I think the muscle weakness issues exacerbates it....
Thank you so much for all your hard work on this, Suzy, this is such important work and something I had no idea about until I started reading your...
My youngest daughter has an hEDS diagnosis from when she was 17 (she’s now 24). She has very long and slender fingers and toes with fingers so...
New Guardian article out today. I feel so desperately sorry for these people, it’s so hard to be so sick with something and have no one willing or...
My youngest daughter has EDS and severe POTS and struggles with neck and shoulder pain, as do I (I have severe ME), and we both find that taking...
Good for you, Sam, good for you. How bloody DARE Dr O’Leary tell us how we should feel about the abuse and deaths and destroyed lives caused to...
I love how when it’s us trying to be a critical friend to a theory that has so little evidence backing it up and the potential to cause huge...
Not to mention it doesn’t say whether any of those were the same person having more than one diagnosis....
My two twenty-something daughters suffer from both depression and fatigue caused by different issues - one has EDS and POTS and, I’m beginning to...
It was more that we worked on how to change the behaviour I knew was causing problems but couldn’t seem to break out of. I was in a terrible boom...
I was referred to my local hospital’s Liaison Psychiatry service when I’d been ill about 2 years and through a neurologist I’d seen (don’t get me...
Yeah, I have POTS with hypertension rather than hypotension too. I had a tilt table test done a couple of years ago when my GP thought I might...
My tilt table test (I'm in the UK) was surprising. I've had ME since at least 2010, and have slowly got worse over the years, usually after some...
I have severe ME and symptoms of POT - heart rate raised over 30 bpm within 10 minutes of standing. I was referred for a TTT by my GP and it was...
I can't recommend this Facebook group enough for benefits advice - it's run by volunteers, all sick and most with ME, and it has a huge library of...
Can I suggest anyone struggling with the UK benefits system join this excellent Facebook group - it's run by and for people with ME and other...
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