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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 considering it because the hot flushes were so sever and exhausting and as I’m already very ill they were definitely having an impact on my ME. I...

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 up the stairs is exhausting and I have to rest several times and literally catch my breath. But it doesn’t necessarily coincide with a raised heart...

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. When I'm struggling with PEM I feel ill, weak, can't be upright including sitting propped up in bed for literally more than a few minutes before I start...

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 posts. Yet it affects so much, and so many people’s lives and deserves to be more widely appreciated.

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 double jointed she can’t use a knife and fork properly because her fingers literally bend backwards when she tries to put pressure on them, long limbs...

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 able to help you ,apart from us MEers, of course, who have “been there, done that, got the t-shirt” ...I hope they start to get some support and help...

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 large magnesium supplement doses (I take 3x 1000mg a day) makes a huge difference to being able to soothe tense and exhausted muscles and stop them...

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 ME/CFS sufferers by the medical establishment, along with the implication that we should be GRATEFUL for her intervention despite being completely tone...

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 damage to vulnerable people, we’re the ones being taken to task for “inaccurate framing [which] creates an unhelpful crusade”, but this same level of proof...

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 suspect, fibromyalgia, and the other one has fatigue as the result of a brain injury and brain surgery described to us by her neuro-oncologist as...

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 and bust cycle, much of which I can now see with many years hindsight was mostly my own problems with societal expectation of women’s roles, feeling...

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 started). He said I was depressed, though how he had the professional experience to diagnose me remains a mystery, but the psychiatrist I saw at the...

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 have POTS but neither of us had any idea my BP was so high. It's absolutely normal when I'm lying down, but it goes so high when I've been standing, or...

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 precipitating event like gallbladder surgery. But in early 2014 I had a sudden relapse into severe which I've never recovered from. Obviously at this...

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 just as well. A TTT usually lasts about 20 minutes plus, but the consultant who carried out mine halted it at 10 minutes because the monitoring showed...

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 resources and information, all free to use. With their help and support I was able to get an enhanced award for both daily living and mobility (I am...

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 chronic stuff and has really good, free resources and loads of expert advice from people who've both worked in and been through the system. Their advice...