Extreme cases only in U.K.?

[markmc20001]

Somebody commented one time on an article that majic pajamas can help with ME. They seem to help with sleep also.

I've tried every other type of pajama out there.

Might be worth a shot!

Getting brother and sister to go to bed and fall asleep is an ongoing challenge for Mom, until they discover the power of The Magic Pajamas.

http://www.themagicpajamas.com/

 

[Calathea]

Mark - I think you may have meant to put that comment on a different post?

 

[markmc20001]

bad attempt at humor I guess.

 

[Boule de feu]

The 75,000 deaths is a wild guess, bear in mind - don't go running around quoting that as a real statistic! But whatever the number, yes, we do have a problem with ME not being listed as the cause of death. Does anyone know what has happened historically with that issue and AIDS, since with AIDS you don't die directly from the AIDS, you die from another condition the AIDS has let in? Are AIDS patients being marked down as dying of AIDS, or as dying of pneumonia (or whatever causes individual deaths)?

Don't go running around...
I doubt I could do that. LOL

 

[Boule de feu]

bad attempt at humor I guess.

My brain must be slow this morning...
Unless the magic pajama is some type of straitjacket you would make your children wear right before going to bed...
But it would be bad humor, too! LOL

 

[Jenny]

Bear in mind that as far as we know, ME has a noticeable death rate. We can think of what, three deaths reported in the UK that we know of? Let's say that we follow the rate I read here somewhere of 3% of people dying of ME, and 250,000 people in the UK having ME, then that's 75,000 deaths, of which we have heard about 3, so that's 0.00004% of deaths being reported. The difference between 0.00004% of deaths being reported and 0% of deaths being reported is negligible. My stats are probably misinformed, I don't know how to adjust for how many deaths there are over a given period of time or even what the period of time is, but I think it would still end up being such a tiny percentage of deaths being reported that it's completely useless to extrapolate data from.

Not sure I understand. Are you calculating 3% of 250,000? If so, that's 7,500.

 

[DaiWelsh]

I am not a statistician and I am dubious about the 3% figure (do you have a source?) but just to put it somewhere more in the ballpark (there are numerous confounding factors I can think of and probably more I can't).

Assuming 250k people currently have ME, 3% are going to die as a result of their ME (I assume that is what the 3% refers to?) so that is 7500 of people in UK currently diagnosed with ME will eventually die as a result of it. Assume some rough figures for average current age (40) and average age at death (70) then you have 30 years over which those deaths will be spread, therefore around 250 deaths per year.

Like I said, I am not a statistician, I am not sure of the validity of the 3% (or even the 250k sufferers as estimates vary widely IME) and I am using very rough estimates, but at least that figure is likely to be in the ballpark rather than the rather scary 75k (no disrespect meant to OP who acknowledged the limitations of their own analysis also).

 

[Calathea]

Evidently I forgot to include the limitations of my ability to use a calculator when I'm tired! Sorry for adding an extra zero. Although yet again, it's a warning about what can happen when trusting statistics, errors can creep in and get embedded.

Somewhere else on this site there is a figure that says that average age at death with ME is 55, but it's probably as controversial as the 250,000 sufferers or 3% death rate - actually, it really doesn't mesh well with the 3% death rate, does it. The fact is that no one has a clue, and I don't think anyone is really going to have a good idea of what ME truly does to life expectancy for decades, not until there has been a lot of really good research, and in particular a better method of diagnosis leading to a more accurate ability to work out how many people are affected with ME at all.

Whatever the numbers are, even if we take 250 a year as a wild guess, and multiply that by however many years it's been since the first ME death that was reported in the media (if that's Sophia Mirza, just over 6 years), and then only three of those that we know of, that's still the vast majority of people dying from ME going completely unmentioned. More than enough to cloud the figures.

And then we get back to the politics of how someone's death is recorded when they have a condition that tends to cause death through an intermediate condition (e.g. top causes of death with ME, again pulled from a possibly-incorrect stat from somewhere on this site, are cancer, suicide and heart disease). I refer you again to the under-recording of AIDS deaths, which is discussed here and here. Considering that this is still very bad after decades, and that there is a higher incentive to record AIDS deaths accurately as it is alarmingly transmissible and has a much higher death rate than ME, and also that in it is easier to diagnose and in some ways less stigmatised than ME, I think it is going to be a very long time before we have solid information about the prevalence of severe ME and deaths from ME.

 

[DaiWelsh]

Somewhere else on this site there is a figure that says that average age at death with ME is 55, but it's probably as controversial as the 250,000 sufferers or 3% death rate

I knew I had read something about lower average age of death, but I partially and approximately accounted for that when using 70 as average age of death (in a general population with average current age of 40 it would be higher I think though I have not checked actuarial tables or anything that scientific ). 55 would be very worrying if true.

One of the confounding factors I mentioned is that the 3% that die from ME are likely to be among the severe sufferers and the severe sufferers will probably have different stats than the general ME population in numerous areas including average age at death.

- actually, it really doesn't mesh well with the 3% death rate, does it.

Not sure on what basis you say this, but I don't think the two have to conflict as there may well be different criteria - if the average age at death is done across whole ME population this will include those who die from other causes (at least officially). For example I am pretty sure I am more likely to walk (or drive) in front of a bus (accidentally I mean) since I got ill but that would presumably not go in the 3%.

The fact is that no one has a clue, and I don't think anyone is really going to have a good idea of what ME truly does to life expectancy for decades, not until there has been a lot of really good research, and in particular a better method of diagnosis leading to a more accurate ability to work out how many people are affected with ME at all.

Indeed

Whatever the numbers are, even if we take 250 a year as a wild guess, and multiply that by however many years it's been since the first ME death that was reported in the media (if that's Sophia Mirza, just over 6 years), and then only three of those that we know of, that's still the vast majority of people dying from ME going completely unmentioned. More than enough to cloud the figures.

Indeed, I didn't mean to undermine the original point, merely to offer a (hopefully, slightly) better figure to muse on than the original.

And then we get back to the politics of how someone's death is recorded when they have a condition that tends to cause death through an intermediate condition (e.g. top causes of death with ME, again pulled from a possibly-incorrect stat from somewhere on this site, are cancer, suicide and heart disease). I refer you again to the under-recording of AIDS deaths, which is discussed here and here. Considering that this is still very bad after decades, and that there is a higher incentive to record AIDS deaths accurately as it is alarmingly transmissible and has a much higher death rate than ME, and also that in it is easier to diagnose and in some ways less stigmatised than ME, I think it is going to be a very long time before we have solid information about the prevalence of severe ME and deaths from ME.

Indeed, it is probably totally meaningless to speculate on any figure at all currently, when combining poor diagnostic criteria with widespread ME denial, poor understanding among professionals, psychiatric conflation etc. But for the purposes of speculation I think it is probably fair to say that only a tiny minority of cases will ever get reported (in the media).

 

[Boule de feu]

Assume some rough figures for average current age (40) and average age at death (70) then you have 30 years over which those deaths will be spread, therefore around 250 deaths per year.

Here again, we could question these quotes since the extreme cases we have seen in the media (the ones who died from ME and not from a related disease) are mostly all under 30. Maybe I'm mistaking?

 

[Sparrow]

I could easily see how somebody dying or heading into an inescapable cycle could be directly related to how much they were encouraged to do. So it makes sense to me that in countries where GET is suggested more often, there might be more severe cases.

I certainly believe that if I had tried to push myself in the months after my Hell Crash that I could have killed myself. It got VERY, VERY bad as it is. And I think we definitely do get serious cases here as well. I remember another thread with someone mentioning a woman in Toronto who could not longer swallow food. And I know that my lowest point was pretty horrific too - not having the energy to move my limbs, or hold up my own head, or breathe easily, etc.(though thankfully, that lowest point didn't last more than a month or two for me). If somebody had forced me to exercise or something, though? Not a chance that I would be where I am today. I'm sure of it.

 

[Calathea]

Here again, we could question these quotes since the extreme cases we have seen in the media (the ones who died from ME and not from a related disease) are mostly all under 30. Maybe I'm mistaking?

Actually I think they go up to early thirties. Still very young, yes.

 

[Insomniac]

Interesting thread.
I often wondered about why I only hear about the really severe cases in the UK, USA and Scandinavia.

I was born and grew up in Britain, first got illl there with ME at age 15/16. My parents took me to Israel out of desperation when I was 19 because the NHS in Britain could not treat my frequent sinus infections and bowel blockages (it was hard to get to a GP and there were horrific queues for everything else.)
My parents were Israelis BTW.

My point is..I have never seen a severe patient here in Israel. I have been here since 1997.
I have seen a few moderately ill but no one as bad as me or even worse like 100% bedridden/housebound.

I have been in contact with the rather pathetic Israeli CFS group who are connected with the American CFS Association. They recommend exercise and they can't put me in touch with anyone severe. All the people running this group are really light cases. Their chief doctor told me off for not "getting a job" like his other patients.

Maybe it's because I have been housebound all these years I haven't been able to search out the severe cases.... Or maybe it's b/c severe cases keep away from that pathetic Israeli CFS group.


CBT isn't forced here. The patient is always strongly recommended exercise + CBT but no one is sectioned or forced to take it. There are no waiting lists for ENTs and many other specialists have much smaller waiting times than there were in the UK. But if you go to a doctor and tell them you have ME or CFS they still treat you like a psyco.

 

[ukxmrv]

It may be that as we get older the cancers, heart problems finish us off and we no longer get "newsworthy" then and therefore not of interest to the papers?

There are some deaths in older PWME sadly with eating problems

Here's one I posted before

(start)

Annabel Senior, aged 60, died on January 8th after 45 years of CFIDS/ME. Toward the end, she was unable to eat anything due to multiple abreactions. She lasted for nearly 53 days without food, and only gave up water toward the end, because she was too weak to swallow. Annabel was 15 when she became sick and died at age 60. The coroner's report said, ""Death due to Chronic Fatigue Syndrome...1a. Left ventricular failure, 1b. Occlusive coronary artery atheroma." She leaves her constant caregiver and husband, Richard. Annabel lived in Conway Valley, North Wales in the United Kingdom.

(end)

and this woman was 39 and her death was sudden so a coroners report published in her local paper

http://www.stalbansreview.co.uk/new..._died_of_sudden_adult_death _syndrome/?ref=mr

A HARPENDEN woman with a history of blackouts collapsed and died as she was getting into bed, an inquest heard today.

On the evening of April 8 this year Vanessa Bellamy told her husband she was going to sleep early because she was feeling tired.

 

[taniaaust1]

Hello Taniaaust1

Least Sth Australia recognises ME - try living in Western Australia. Local SA ME/CFS society is more medical orientated, you should see the perth one? Talk about charlatan central!

Foggy. I agree that the situation in WA may be lagging behind the SA one. I have a cousin in WA who has ME but is without diagnoses. She's on disability for an "unknown illness" and got disability according to the amount of symptoms and degree she has.

 

[taniaaust1]

In a chat with allyb something came up that allyb wanted me to comment on. I have been talking to people about this DVD. It occurs to me that we should be approaching producers etc. of TV shows that show this kind of thing to encourage them to consider airing it on TV. In Australia that show would be Four Corners, an in-depth investigative reporting TV show, the only one with the kind of scope and depth needed. Where in your media, in your country, is there a similar show you can approach? Please think about it. Bye,Alex

I think someone needs to set up a possible ME/CFS advocacy pages for the different countries to make it easier for those with very low energy to be working on that level, there is a need for those with ME/CFS to be helping each other to do advocacy as its too hard for most of us to sort out and do. (i tried to do that in wiki here but didnt get very far with it).

Another media outlet I suggest for the Australians is the TV program TodayTonight http://au.news.yahoo.com/today-tonight/contactus/ or there is a suggest story form which can be filled out at http://au.news.yahoo.com/today-tonight/contactus/suggest-a-story

 

[taniaaust1]

I have been in contact with the rather pathetic Israeli CFS group who are connected with the American CFS Association. They recommend exercise and they can't put me in touch with anyone severe. All the people running this group are really light cases.

One will always have the less severe ones running the support groups as the more severe ones arent capable, they will be lucky just to attend a meeting. Unfortunately this also means that the more severe ones may be far less understood by the groups who are supposed to be supporting them and less heard.

One thing ive noticed is that all the articles in my local ME/CFS journal put out by the support group, seem to figure more minor cases. I often wish they would have more articles on severe ME/CFS as personally I feel like this is being left out.

Maybe they just dont thou as they may think its too depressing??? for those more severe to be sharing their stories? or maybe the more severe arent contacting them much?? I dont know what it is but why severe ME is so rarely mentioned. I often feel like its being left out.

 

[taniaaust1]

I had a thought... as we all know no one seems to really know that death rate and more studies are needed in this area.

I personally think our local ME/CFS orgs would be good ones to set up long term studies in this area if volenteers could help to get the info together (enrol those with ME/CFS into a study along with control group) and follow them up year by year (a death comparison to the control group.. I know Im wanting info ASAP so would love to know yearly outcome of such a study).

I think I'll mention that to my local group when things are more stable for me as I'd be willing to try to set up a study and who cares if it isnt a registered one or not.. one which is backed by a ME/CFS associations even if small local ones, would be enough for most of us to help provide us with answers to something like actual death rate in us and the differencees in what we die from compared to the average pop.

 

[Boule de feu]

I had a thought... as we all know no one seems to really know that death rate and more studies are needed in this area.

I personally think our local ME/CFS orgs would be good ones to set up long term studies in this area if volenteers could help to get the info together (enrol those with ME/CFS into a study along with control group) and follow them up year by year (a death comparison to the control group.. I know Im wanting info ASAP so would love to know yearly outcome of such a study).

I think I'll mention that to my local group when things are more stable for me as I'd be willing to try to set up a study and who cares if it isnt a registered one or not.. one which is backed by a ME/CFS associations even if small local ones, would be enough for most of us to help provide us with answers to something like actual death rate in us and the differencees in what we die from compared to the average pop.

This is a good idea. I know they have tried to reach many of the patients who got CFS during outbreaks and did a follow up on them - was it the Lyndonville cohort?

On the same token, and for the ones who haven't seen this before, there is a death registry for CFS.
http://www.ncf-net.org/memorial.htm
It gives an idea on how some cases were very severe.

 

[ukxmrv]

There's the ME observatory project in the UK but deaths are not specifically mentioned

http://www.lshtm.ac.uk/eph/nphir/research/cfs-me/index.html

I think that when Lenny Jason did his research into death rates he used some of the memorial sites. Please remember to send through notices of deaths to the NCF. I've been doing so. I think that it only gets updated once or twice a year though.