Was our ME/CFS inevitable?

[Kitty]

Though there may be a genetic predisposition I don’t think there is a simple relationship between predisposition, infection and ME onset.

I share that perspective. I can never know whether I had an infection at onset, but I had no symptoms. It started during the glorious summer of 1976, when I had a gap between jobs that meant I could spend several weeks outdoors enjoying myself with friends.

From late summer I started what was a very slow decline in function, though by cutting back on the number of gigs I went to I was still able to work. (The job was incredibly undemanding, but all the same I had to turn up and sit for eight hours in an office every day.)

It'll be 50 years later this year, though technically I got nine of those off due to near-complete remissions.

 

[Mij]

My sister who is six years younger than me developed Hashimoto. My sudden viral onset attacked my thyroid, I had 'extremely' elevated anti-thyroid antibodies and I got ME. Thyroid scan indicated my thyroid function was normal.

 

[Mij]

I was never sick in my life before I got a viral infection at age 29 that developed into ME.

 

[Eddie]

I think inevitability assumes that that the future and past are things that exist. It doesn't make sense to say that something that doesn't exist could have been different or is certain to happen.

My view is that time only exists in so far as there is an indivisible experience. We have an experience and so we exist now. But me before ME/CFS, and my future self don't exist except in so far as they exist now within my experience. Memories of the past and predictions of the future are all experiences and whenever experiences occur, they occur now. When you ask if the past could have been different, I don't think there is any past to have been different. You have the current experience of memories but for that experience to be different the world would have had to play out differently.

So I think what is inevitable is that you would experience this moment now as it is. And there are reasons why we experience this moment as it is but even the casual pathways that got us here are experiences now and not things that "did" occur. So all that to say that there are just experiences now and that's kind of it as far as I can tell.

 

[Jonathan Edwards]

I think inevitability assumes that that the future and past are things that exist. It doesn't make sense to say that something that doesn't exist could have been different or is certain to happen.

That is quite an austere position. It is reminiscent of Leibniz in that for him space was the order of things that co-exist and time the order of things that do not co-exist. But even then he allowed that things will exist and have existed - which is how most people use the word.

Interestingly, if you take your position and factor in relativity and the rule that time and space metrics have to be treated the same way and that sequence is as much a matter of space as of time then you get some interesting results. There is no particular 'universe' any more, just here&now. Moreover, I think there are interesting implications for dark matter, making it possible that it is an artefact of the paucity of causal connections between galaxies in a GR framework. But my hot cross bun tastes fine here&now so I am not too worried.

 

[richie]

Would all of us with ME/CFS have got it sooner or later? Particularly those of us with severe ME/CFS?

Lots of us seem to have got ME/CFS following an infection, which makes me wonder whether, If we'd dodged that particular infection, we'd have been doomed to get it anyway, at some point.

I don't understand the biological theories well enough to know the answer. I know that a genetic disposition doesn't guarantee that an illness will manifest, but if the illness is one that can be triggered by viruses, and we live in a world of viruses, maybe for us it was only a matter of time...?

It gets us.

 

[Peter T]

Would all of us with ME/CFS have got it sooner or later? Particularly those of us with severe ME/CFS?

[Sorry this is a bit of a tangent, moderators feel free to delete]

My onset was in my mid thirties, so it meant I had an education, my own home, a career and an established friendship group, which I think has left me in a better position than people who were younger at onset.

Having a relapsing and remitting for of ME/CFS, meant though it has taken much away from me, I lost a career I loved, my dream two acre garden, most of my former recreations, etc, I have also had times when not being able to work gave me freedom to do other things. When my best friend in another country died I was able to spend three months overseas supporting his family. In my mother’s last years I could spend hours on the phone with her each day helping remind her who the people around her were, then regularly spend weeks at a time staying near by when she went into care.

However I was lucky that these times coincided with periods of relative remission. The last ten years have been harder being severe and at times very severe. I am not sure how I would cope if such situations arose now. Also although I have reasonable relations with my godchildren and nieces and nephews, as they start to have children it is unlikely I will ever achieve as much closeness with their children.