Poll: what is your age bracket?

[GlassCannonLife]

I was wondering what the general distribution of age groups is here - it would be nice to also be able to know how long people have been sick at what age, but you can't make multivariate polls here.

I have kept it based on decades to make it easier to look at.

Thanks all!

 

[Rufous McKinney]

nothing like being at the end of an age bracket, seeing the next age bracket coming on board!

 

[Judee]

40+ years with this disease just didn't have a name for it way back when.

 

[GlassCannonLife]

40+ years with this disease just didn't have a name for it way back when.

Wow Judee, I'm sorry it's been so long. Hopefully we find a cure soon!

I'm sure that sentiment has been echoed for years (if not decades), but I remain hopeful

 

[geraldt52]

I think all this tells you is who you are hanging out with . I actually think the more interesting, and more relevant, question is how old you were when you first got sick...

 

[Rufous McKinney]

40+ years with this disease just didn't have a name for it way back when.

I am from the WayBack machine era....literally.

1963 I got the bad mono, was out of school for months and it began: THIS

it seems they had not yet located Mr. Eppstein at that time. And my Mono bouts were called "impossible"

(as its something you get once)

round 1 tonsils round 2 pneumonia round 3 appendix Round 4 Prednisone....it came right back.

So I was mild and functional for decades and did not have classic PEM, either. That all changed about four years ago, I hope others can be spared a worsening. Worsening sucks.

 

[GlassCannonLife]

I think all this tells you is who you are hanging out with . I actually think the more interesting, and more relevant, question is how old you were when you first got sick...

Haha true.

When I get out of this crash I might see if I can set up a survey with a small number of questions, that way I could share the data here and we could see eg average ages of onset, duration, severity, change over time, causative agent, etc.

 

[GlassCannonLife]

I am from the WayBack machine era....literally.

1963 I got the bad mono, was out of school for months and it began: THIS

it seems they had not yet located Mr. Eppstein at that time. And my Mono bouts were called "impossible"

(as its something you get once)

round 1 tonsils round 2 pneumonia round 3 appendix Round 4 Prednisone....it came right back.

So I was mild and functional for decades and did not have classic PEM, either. That all changed about four years ago, I hope others can be spared a worsening. Worsening sucks.

Ah, sorry to hear it's been so long for you as well! I can't imagine there was much understanding for you at all back then.

Worsening indeed sucks! I was only lucky enough to be mild for around a year before I got worse, then moderate for 3 months and now severe for 2.5 years. It's very interesting how different all of our journeys are.

 

[Rufous McKinney]

Worsening indeed sucks! I was only lucky enough to be mild for around a year before I got worse,

I'm sorry that happened....

Was just chatting with my husband, that its hard for me to piece all this together.

I personally have mentally forgotten my own recent saga. I was asking him to help me remember, like eight years ago- how was I describing this mess? Its hard to pin down how it changed: but it sure did.

(he wasn't very helpful).

Its weird to have your own personal history sort of vaporize because your lost in the experience of it all.

I convince myself my memories will last. Despite these ones being already altered or missing somehow.

At this time, literally four years ago, I was reading phone book sized documents with a font of 8, and writing intense comments letters to huge agencies about vastly complex matters. (I was very weak, moving around however, but brain was still functioning)

How is it possible that was only four years ago?

 

[GlassCannonLife]

I'm sorry that happened....

Was just chatting with my husband, that its hard for me to piece all this together.

I personally have mentally forgotten my own recent saga. I was asking him to help me remember, like eight years ago- how was I describing this mess? Its hard to pin down how it changed: but it sure did.

(he wasn't very helpful).

Its weird to have your own personal history sort of vaporize because your lost in the experience of it all.

I convince myself my memories will last. Despite these ones being already altered or missing somehow.

At this time, literally four years ago, I was reading phone book sized documents with a font of 8, and writing intense comments letters to huge agencies about vastly complex matters. (I was very weak, moving around however, but brain was still functioning)

How is it possible that was only four years ago?

Yeah it's crazy! I particularly find that with crashes - how could I have been so much better then suddenly am so much more disabled.! I had thought I'd be going back to work after 6 months or so when I first became severe.. But alas here we are

 

[godlovesatrier]

From memory we seem to have all ages

 

[godlovesatrier]

@Rufous McKinney bizarre isn't it rufous! Like you I had reactivated very acute ebv last year which according to the literature occurs in less than 5% of patients, so extremely rare if the data is accurate.

 

[Rufous McKinney]

When I get out of this crash I might see if I can set up a survey with a small number of questions, that way I could share the data here and we could see eg average ages of onset, duration, severity, change over time, causative agent, etc.

has any researcher tried to summarize this type of info in a patient cohort I wonder?

 

[2Cor.12:19]

@GlassCannonLife I'm glad you posted this as I was thinking the same thing.
I'm 70 and got ME/CFS when I was 36 following an acute Epstein Barr infection (non mono) Mine has ranged from severe-moderate/severe. I'm housebound mostly. Zero social life apart from family.

I'm curious about how ME/CFS has impacted people closer to my age who have had this for decades.
Healthy people tend to develop health issues as they get older and it's hard to know which of my current conditions stem from ME/CFS or whether I would have developed some of them anyway. eg; pulmonary hyptertenstion, fatty liver, axonal polyneuroapthy, anxiety disorder, chronic tinnitus, sleep apnea, GI issues. ect. Seems every year brings a new diagnosis.

I'm also curious about life expectancy for those of us who have had this for so long. I've read it's shorter, but who really knows? (Besides God)

 

[Rufous McKinney]

I'm also curious about life expectancy for those of us who have had this for so long. I've read it's shorter, but who really knows? (Besides God)

I think that one is best left unanswered....

Just keep operating and don' t worry about the destination.

 

[Nacht Segler]

42 here.

 

[Ingold12]

26 here, started getting ill in June/July of this year. @GlassCannonLife, your idea of a multivariate poll sounds extremely interesting, I happen to recall merely a couple of ME/CFS papers analyzing onset patterns and, rather than performing statistical analysis, they only described a few cases.