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

[rvallee]

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.

The catastrophic collapse of Tony Wallace’s life began slowly and silently.

An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right.

Over time, his ambiguous symptoms have morphed into a condition that defies medical diagnosis, resists treatment and relentlessly, ruthlessly drains the life out of his body.

The man who was once sharp, fit and strong knows that fighting his condition only makes things worse.

“I could say I will walk up and down the hill every day, but on the third day I won’t be able to get out of bed,” he concedes.

“So now my brainpower has to go towards acceptance rather than [saying] I’m going to plough ahead and ignore the pain.

“This disease just doesn’t give you that option. You are just down and out.”

The disease afflicting him was eventually diagnosed as myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome or ME/CFS.

Tony’s wife, Sharon Stitt, believes he is one of the so-called “missing millions” — people with complex illnesses that drive them behind closed doors, away from public view.

Unable to work and cut off from family and friends by their incapacity, they end up isolated and invisible.

The suffocating immobility of Tony’s life is hard for an able-bodied person to comprehend.

Imagine you spend every day wading through wet cement.

It’s always there, impeding your every step, your every move, every minute of every single day.

Only the depth changes.

Sometimes it’s waist-deep, sometimes it’s chest-deep and sometimes you feel like you are drowning, struggling to keep your head above the surface.

The condition first emerged following a bout of flu in his 40s from which Tony struggled to recover.

Over the next decade his condition would deteriorate, at first almost imperceptibly, then escalating to the point where his health plunged off a cliff.

“My father is 83 years of age and he is in better health and physical condition than I am,” Tony says.

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

 

[Peter]

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.

 

[Trish]

The thing that struck me was the stuff about seeing an expert and getting treatment which he says helped him get back to work, but when he did a lot of physical activity for a few days he crashed badly and is now much sicker.

I wonder what the miracle treatment was that got him back to work and misled him into thinking he could do lots of physical activity, ultimately doing him harm.

 

[Peter]

The thing that struck me was the stuff about seeing an expert and getting treatment which he says helped him get back to work, but when he did a lot of physical activity for a few days he crashed badly and is now much sicker.

I wonder what the miracle treatment was that got him back to work and misled him into thinking he could do lots of physical activity, ultimately doing him harm.

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.

 

[NelliePledge]

The thing that struck me was the stuff about seeing an expert and getting treatment which he says helped him get back to work, but when he did a lot of physical activity for a few days he crashed badly and is now much sicker.

I wonder what the miracle treatment was that got him back to work and misled him into thinking he could do lots of physical activity, ultimately doing him harm.

Yes indeed should be named.

 

[Holinger]

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.

 

[Sisyphus]

The thing that struck me was the stuff about seeing an expert and getting treatment which he says helped him get back to work, but when he did a lot of physical activity for a few days he crashed badly and is now much sicker.

I wonder what the miracle treatment was that got him back to work and misled him into thinking he could do lots of physical activity, ultimately doing him harm.

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.