CFS statistics

[knackers323]

Anyone know the diagnosis rate of cfs and related illnesses? Are they just increasing at the same rate as population growth, or are they becoming more prevelant?

 

[Esther12]

The rates are so variable (depending upon how the study is done and the criteria used) that we cant really say if they're going up or down with much confidence.

In the late 90s there was talk about wise psychosocial management leading to the end of CFS... that aint happened.

 

[taniaaust1]

As Esther pointed out, there is no way to tell unless studies using the same definitions had been done (I'd think too that it would be important to do them in the same country as who knows we may even have different rates in different countries).

 

[amaru7]

Up to this date cfs is a not clearly defined disease and most doctors don't know anything about it, so any statistics on the populations are estimates at best.it's a kind of shadow disease And people with it are forgotten often and left behind by professionals and society.

 

[alex3619]

Nobody can definitively answer this question. I have pondered this myself. My guess is its reached a steady state, or a slow growth state, and is not rising in leaps and bounds, but reporting, non-reporting and mis-reporting is so bad that we might have a raging pandemic and I am not sure authorities would notice. Post-Q-fever, post-SARS, etc., these days these problems are being reported separately based on pathogen. Who knows what lurks behind this? All this without mentioning dismissal by psychobabble.

 

[peggy-sue]

I don't know for sure yet that what I have isn't Post-Q-fever - because I know I was infected by it in the early '80s (I have the Home Office certificate to prove it).

I have had stool samles taken and sent to Glasgow for some sort of analysis - all I got back is that my titre is now lower than it was, and that was that. I strongly suspect the wrong test was done - they should have been looking for something else now, if it's the post thing I've got - not active bugs!.

As to prevalence, it's impossible to say, because of the different criteria used.
To my knowledge, nobody has ever tried to count the number of folk with "CFS" who also have PEM, which would be your answer.

All I can say is I personally (as in, ignoring forums) know a lot more folk with ME than I do with MS or AIDS or Parkinson's. I don't know a single person with MND.

 

[*GG*]

Anyone know the diagnosis rate of cfs and related illnesses? Are they just increasing at the same rate as population growth, or are they becoming more prevelant?

Good question!

I would hope it is not increasing, but if it's not increasing, then we are not likely to get more funding from the gov't, although they only seem to "muddy the waters". So perhaps that is not such a bad thing? Also, don't want more people getting this dam illness then what is already happening!

GG

 

[knackers323]

It's not the same thing but if the mods can tell us how many people have joined the forums each year, that will give us a rough guide maybe?

 

[WillowJ]

The Griffith folks wrote this review which says some of the same things we are saying here, and attempts to sort the data by definition, which seems useful:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3616604/

 

[Esther12]

It's not the same thing but if the mods can tell us how many people have joined the forums each year, that will give us a rough guide maybe?

There'd be too many confounding factors (CFS stuff in the news - XMRV; a popular article on PR, etc)

 

[Undisclosed]

It's not the same thing but if the mods can tell us how many people have joined the forums each year, that will give us a rough guide maybe?

That's difficult because a lot of spammers 'join' us and then we ban them. Those are the ones we catch so there are idle spammer accounts. Then there are those that join for business purposes and don't have ME/CFS -- they never post and most never come back. There are those that join us who don't have a diagnosis but do find the forums useful anyways. We have researchers, physicians, other health care professionals join us. We have caregivers joining. We have members who rejoin because they have forgotten their log in details or have left and come back. Sometimes our numbers reflect a greater increase of users when new research comes out or one of our team writes an excellent article. We get more people joining during certain months. Generally, the numbers have increased as more and more people find Phoenix Rising.

 

[peggy-sue]

I knew of PR for years and years before joining in. It scared me too much at the start. It's HUGE, and there are a lot of conflicting attitudes and folk with differing theories I wasn't up to coping with.
It was only to try to find out what was happening with XMRV that persuaded me to dip my toes in, although I first encountered in when I was searching for info about the Marshall Protocol.
(Which I decided not to do.)

Before that, I stuck to very small and mostly just supportive forums.

Folk who post on forums are a "self-selected group" from the start.