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Sorry to disagree folks, but I find cupping a very effective way of helping my ME. Cupping a large mug of steaming, freshly filtered coffee in my hands in the morning certainly improves my mood, and a hot mug of Earl Grey at lunchtime does wonders for my system. As for a cup of warm milk at...

Sorry, forgot to answer. No, not at all. But my diet is pretty good anyway. I do keep trying to come off the steroids, but it's such a poor quality of life with constant head pain.

Thanks for such a clear explanation. I wish I had had just one or two doctors, who could have seen me buckling under the system and explained it to me in better patches. It would have been enough just to have one "junior" doctor overseeing my notes. (Every change of dispensing nurse meant I had...

Hi all. I'm trying to understand what is going on: I'm not looking for medical advice (which we avoid doing here anyway) but trying to wrap my head around the logic (?) and structure of what is happening to me. So if anyone can give me the Enid Blyton version, I'd be grateful. I have been taken...

Thanks @Helen . No, I hadn't heard of it: it's quite difficult to underestimate my ignorance in many matters! Step outside of PACE, limericks and maths, and I have the performance capabilities of a sloth.

I mean a scientifically combative approach, challenging them to justify their stance after providing evidence to the contrary. It is possible to be scientifically combative, but remain pleasant. Well, perhaps being pleasant is a bit more of a challenge for me, but I try.

The sad part of it all is that all of the medical folk I came across, along with all of the support staff, were actually very caring and committed: and, let's face it, taking risks to save my life. The hassle is just so unnecessary.

I honestly don't think a card would work. What it needs is a combative approach, delivered in person to the key clinicians, so that they can each raise various objections (e.g. no tests, no approved treatment, etc.) and have them shot down in flames. It has to be someone with the confidence to...

It was immensely frustrating to be visited by 30 or so different doctors, each clutching their piece of paper, asking the same questions and conducting more or less the same examinations. Then one of them would suggest something like procedure A or B, and disappear, never to be seen again. As...

Thanks! I'm climbing out of the pit, but sleeping a lot. A long dose of two types of antibiotics at the moment, in the hope that the cysts on my liver are abscesses, and that the combined antibiotics will get rid of them. But at least I am getting a healthy diet now that I am home, with decent...

Ah yes, that dreaded mid-range electromagnetic radiation as well, the sort that wakes me up in the morning: that needs investigating. Summer is the worst of course, blasting out at a ridiculously early hour.

I have had a little time lately to do some thinking, and have decided that it is time to name this new syndrome. I call it CCFS – chronic CBT faith syndrome: the criteria for membership, the Old Crocks Board Criteria, simply needs 6 months or more of an unshakeable belief that CBT can treat or...

Thanks all for the support. I got back home yesterday afternoon. Will post properly when I start to pick up! Finally getting some treatment that makes sense.

Thanks all! I went in around midnight: cannula fitted, drugs kick in, 1:00. X-ray of lungs, 2:00 first doctor examines and asks questions, 3:00 second doctor asks same questions plus more, and examines, 4:00 moved up to COVID ward, 5:30 woken up for blood pressure etc., then blood samples, then...

Thanks. Natalie has kept me in the loop: she's a very nice person! I really miss Bob: he introduced me to all of you!

Wow, "daily CRP"!!! I'm home, had an outpatient appointment yesterday, took blood, CRP around 30 (I had to ask the doctor and that's what he thought it was), and aren't going to see anyone until after an MRI scan, which is scheduled for one week after the antibiotics run out.

Thanks all. I was somewhat sceptical of the leaky gut idea, and, as you quite rightly point out @Jonathan , the logic of a single infection doesn't hold out. But to be honest, I'm so steamrollered I'm not confident in my own ability to think things through, I knew the best thing was to ask here...

Late at night on April 26th I was carted off to hospital with a pretty bad infection. No, not COVID, although I had to go into the COVID A&E side to play safe, but with an e-coli infection in the blood (sepsis). I was given IV antibiotics, sent home after 10 days. Five days later, and rushed...

I know I'm late here, but I'd just like to note that she did a lot of work behind the scenes. In particular she tried hard to get the Lancet to respond to our original concerns about the PACE trial, including going to the Lancet's ombudsman and to the press commission. She also was in regular...

I tend to work more with analogies when I want to get my brain around something, and to me the search for the rogue trigger (the missing chemical) could be compared with a search, in America, for a lone, serial murderer. Crucial factors are the abilities of different police forces to fund an...