How chronic fatigue syndrome, also called ME/CFS, left Tony Wallace a shell of his former self - ABC News (Australian Broadcasting Corporation)

A personal account of one man's life with ME. It lacks depth but it gives a good idea of the impact on quality of life.

Some technical bits are a bit off but it still adds up to a fair account of life with ME, how it unfolds, how much if affects, the social consequences, etc. I can say it very much mirrors my situation, though I was self-employed at the time and that was its own additional problem.

Missed opportunity to at least have a short bit on the recent funding and how there is a reversal on the way, one that still needs to be pushed to succeed.

https://www.abc.net.au/news/2020-01...lness-left-tony-wallace-a-hollow-man/11839536

 

Yep, I agree. There are bits and pieces that always can be better/clearer in an article like this, but yeah captured my own “journey“ quite good, to.

But made big eyes when reading the very first sentence: “A mysterious illness with few symptoms”...?

That is completely wrong. If there is only one thing the “experts” agree upon, it is the great symptom-burden. One could imagine that the meaning was to write “few markers” or something similar.

 

Yes, would be interesting to know more about that. Specialist in chronic fatigue? Hmmm. Are we dealing with a classic aftermath of LP or something similar? Suddenly starting pushing and collapsing?

All together, I think the article quite well capture the many losses and desperate struggle that patients experience.

 

The only specialist in Melbourne I think he could be referring to is dr Michael Oldmeadow at the Alfred hospital. He is a consultant physician. Not sure what treatment he is talking about but could be narcolepsy stimulant drugs that maybe led to a crash. Just speculating.

 

it seems that any new fix works for a little while. Take some vitamins, eat more, eat less, fiddle with hormones, all “work” for some increment of time. What may be happening is that there is some sort of shock response to anything new, but then the body quickly runs out its defective battery.

It may also be that we have a core biochemical chain that is 80% broken, and Some treatments repair a link or two, but not the fundamental cause of the brokenness. So we appear to be working for a little while, but then the other corroded links burn through again.
Also, some editions of PDR have a spectacular treatment for us: Amphetamines.