ME - touching base

I'm touching base with people here on ME as I certainly believe I have it. Thanks for the opening thread, Andrew. (As I have ME as I type this, very mildly, I'll focus better on your opener later. But I thought I'd share my own symptoms and an anecdote or two as it may compare (or not) to others'.

More than once I've actually gone quiet on HP saying I had a "virus" and to be honest I think in almost all cases it was ME. I'm in no way in denial about ME, but the good news for me is that it never lasts too long, and I actually put it right out of my mind when it's gone, forgetting I ever had it. So when it returns, I don't recognise it for what it is. Maybe there is some denial there, as I don't like to think of the rotten past times with it.

I never had it before one of the most virulant infections of my life. I was at a conference attended by 400 in Lisbon, and about 95% of the people there, from all over Europe, came down with a wicked illness which had us in bed all over the Continent for up to 3 weeks. After that intermittent ME began. So this is true to the usual story.

In the late 80s and early 90s I had it in a pattern I haven't heard of. I actually thought myself lucky. It would begin out of the blue, taking just about 120 seconds from me feeling normal to all the symptoms. But after about 48 hours it would suddenly go again, and I could think straight, get up, and was overjoyed. ... But it used to return every 2 weeks. Things have been much better for over 15 years which I hope will encourage people. Getting it every 2 weeks just stopped at some point, and now it's only a hanful of times a year, or some years I may not even have had it. (I've kept no record.)

My symptoms are kinda half of those in the usual list. Probably the main one is that it is dreadful trying to do anything but lie down, though if I really need to exert myself the strength is in fact all still there. At the time I even had a job I could just about do when actually lying some of the time on a sofa, so I never missed a day's work with it, though almost any other job I couldn't have done. Lucky!

I was on my way once to a very tough badminton game when ME suddenly began. The medics had all been hinting (or more) that it was my imagination, so just to find out I carried on to the badminton. I knew that in the middle of a rally I'm not thinking of anything else and couldn't possibly sustain a psychosomatic illness. Well, I actually played for almost 2 hours, but it almost killed me 😉 and I was half-dead for a couple of days.

Finally, the frustration about how you are treated! Things may be different now? I've given up with orthodox medicine, but did go to my GP around 1992. He sent me to a hospital specialist and I got her to swear and promise that she was treating it seriously as a physical illness. On my third visit her phone rang and I found myself just sitting there for a minute. can read upside-down and noticed on her desk that the letter-heading had her as an 'expert' in psychosomatic illness. She had lied to me, I told her so, I stormed out and have never asked for orthodox help since.

So maybe some will recognise similar features here, and not others. I have ME as I type this but only mild or I couldn't do this. I still consider myself very fortunate compared to most - on past record this could pass within just 1-4 days. My thoughts are certainly with anyone who has this persistently . That I can hardly imagine.

Venetian