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Except an awful lot of us didn't get sick after a virus. I became sick after a hepatitis B vaccine. I saw a survey recently (can't remember where sadly), and was suprised to see that more of the patients in the survey had developed ME after a vaccine, than after a virus. So ME/PVS would exclude...

Very suprised to see so many people here who do not have to spend most of their life horizontal! For me it has become my most disabling symptom as it means I can't sit upright for long enough to go anywhere, even the hospital. My symptoms began with a very sudden onset of neurological type...

I have had ME for 25 years and it really began with Orthostatic Intolerance as the very first symptom. I just woke up with it one day and things deteriorated from there. Of course at the time I didn't know it was "Orthostatic intolerance", as I had never even heard of the term. Like you I have...

Mmm... but for most of the last 25 years that I have been ill, nobody has been bothering to look for the mechanism. If you don't look you won't find it. My brother is actually a theoretical physicist. He has an incredibly inquisitive mind. In contrast, the attitude of a lot of the doctors I...

My GP is a decent man, and believes in the condition, but basically said to me "I suggest you go and do your research, and if there is anything you want from me and it is legal, I will prescribe it." Of course we both knew there was absolutely nothing he could prescribe. 25 years of this. A lost...

I'm another one who didn't find it too bad. A few hot flushes, but nothing worse than the weird hot flushes I sometimes got anyhow with my combination of ME/fibromyalgia. Menopause symptoms may be a bit of a shock for a woman who has been perfectly healthy up to menopause, but for me all the...

I hate to tell you this, but my severe pain kicked in suddenly.... at year 14. Before that I was relatively pain free. Same thing happened to one of my old university friends. Fingers crossed that doesn't happen to your daughter. Some people do seem to avoid the pain.

Interesting to hear about your reaction to vitamin D. I have a similar problem. Everyone is always saying it is good for bone health etc.,but if I take it, my cognitive function declines dramatically within a few hours. I have tried many brands. I am the same as you when it comes to heat and...

I see your point. However, I suspect ME is not one of those illnesses where there is going to be a steady state of prevalence. In my case, ME appears to have been triggered by a hepatitis vaccination. As a society we are having far more vaccinations now than even when I was diagnosed 20 odd...

Back when I was diagnosed in 2000, the figure quoted for UK ME sufferers, was 250,000. That figure dated from about 1994. Since my own diagnosis, I have come across 10 people who have also been diagnosed since 1994. This was without actually looking for people with ME. These people are former...

I am replying rather late to your comment, but I have had the same problem with my father. He couldn't take any of the blood pressure medications without unpleasant side effects. He threw all the drugs in the bin, and just ignored all requests for blood pressure readings from his GP. They also...

This is probably a bit off topic, but I do know of 3 people who "recovered" from ME at the 14 year point. One of them put it down to trying homeopathy, so I tried her homeopath and the treatment made me worse. The second one put it down to drinking soy milk smoothies. I didn't bother trying...

I'm not sure there is any accurate answer to any of your queries. I've had it 3 times now, with no serious long term effects. I actually managed to catch the very first version, during our first lock down. The only person I had met was my supermarket delivery driver, who with hindsight did...

And there in a nutshell Colin McEvedy reveals the real problem with the British medical establishment. Given his plumby voice and the date when this was filmed, I am going to hazard a guess that he went to an all boys prep school, and then to an all boys public school, possibly even an all male...

You are far kinder than me. I am afraid I lay the responsibility for the loss of what should have been a brilliant career, squarely at the door of this man. Decent research was slowly starting to be done in the 1980's and then he came along with his Beard and McVeady misogynistic psycho babble...

This is interesting. I started off with a diagnosis of severe ME over 20 years ago. At year 12 my pain levels went through the roof and my doctor at that time decided I had fibromyalgia as well. One of my old friends from university had exactly the same illness pattern. It is hard to tell where...

I have had severe ME for over 20 years and asthma for longer than that. I caught the first strain of covid at my front door from a delivery driver. This was before they had produced a vaccine. I was pretty ill, but to be honest I have felt far sicker with my ME symptoms, and whilst I had Covid...

I take it everyday. I occasionally try reducing the dosage but my pain invariably flares up. However I have to say that when starting on Tramadol I needed to start on a very low dose of 25mg a day, and gradually built up to 100mg where I have remained for about the last 10 years. I take a 50mg...

I had a similar problem for the first 10 years of my ME diagnosis (I have been ill for 23 years). The types of food I could tolerate steadily reduced and I lost lots of weight, despite already being very slim. After the first 10 years I was prescribed Tramadol for pain relief (maximum 100 mg a...