ME/CFS is a living death--why mortality isnt what matters in illness advocacy

[frozenborderline]

There are none where it is legal to torture somebody.

Not that we dont still do it, but point taken. It's generally acknowledged as cruel and criminal

 

[frozenborderline]

I think a lot of people may agree with the headline but in my view the important thing is I gathered all the possible statistics I could and combined that with discussion of why we culturally ignore quality of life and only care about mortality and acute illness, which is p common and major issue.

 

[frozenborderline]

I'm hoping someone will be willing to post this on reddit or some other forums , or facebook

 

[GlassCannonLife]

I'm hoping someone will be willing to post this on reddit or some other forums , or facebook

I wonder if we could engage the HIV/AIDS community and get them to help us get the word out? Use the shared parallel of suffering over decades.?

 

[frozenborderline]

I wonder if we could engage the HIV/AIDS community and get them to help us get the word out? Use the shared parallel of suffering over decades.?

Well there are a couple people in this community who also have HIV/AIDS , and one of them was a member of act up before having me/cfs I believe. Terri wilder.

 

[frozenborderline]

Sadly, we have to realize that there are plenty of other illnesses, diseases, etc., that have people living in the same depths as we experience.

Well, I'm not aware of any other disease with such a serious discrepancy between disease burden , measured in recent studies , and actual funding. There are bad disease that are underfunded , but I'm actually not aware of any cases as extreme as me/cfs.

The most recent leonard Jason paper on updated prevalence estimates of me/cfs in 2022 has me/cfs increased from 500k to 1.5 million prevalence pre pandemic to 4 to 9 million post pandemic conservatively, and says that pre pandemic disease burden would have justified funding of 200 million$/year based on what comparable diseases get but that with the new situation something like half a billion a year is justified. This is based on disease burden and what comparable disease get. This isn't a suffering contest but these things have to be hashed out and compared to actually get what we deserve and More than that , need.

I mean, to be clear, I doubt there are any diseases as severe as ME/CFS that get under 100 million funding. But its possible. Maybe tell me one... but I am sure that if you find one as severe as this that gets under 100 million in funding it will be a rare disease and me/cfs is not a rare disease. A rare disease kr orphan disease is under 200k people in the US. Me/cfs is well above that.

When Aids activists protested they emphasized the unique and terrible nature of the suffering and threat of that disease, and they demanded more funding bc they deserved it. I think that should be our attitude. I don't think we should just roll over and accept this

 

[wabi-sabi]

I have to agree with @lenora . Yes, our disease cases immerse suffering, but other diseases are no picnic either. I am uncomfortable with the- we are suffering the most, so we deserve the most- narrative, even if we do suffer the most. All people deserve care. Allocating care on the basis of suffering serves only to exclude those who are deemed unworthy. We are all worthy.

I think it's better to make common cause across illnesses. People with chronic illness, whatever that illness is, understand the world differently than healthy people. We know the importance of compassion and helping each other. It's the only way to survive these illnesses. We also know that anyone, anytime, anywhere can be struck down. That illness is more a matter of bad luck than personal responsibility. None of us bear blame for our conditions and we should not be treated as though we do. Health is a gift, not something you earn with hard work. Illness is a hardship to be carried together.

Yes, we need more advocacy. But lets do it through building connections, not separation.

 

[frozenborderline]

have to agree with @lenora . Yes, our disease cases immerse suffering, but other diseases are no picnic either. I am uncomfortable with the- we are suffering the most, so we deserve the most- narrative, even if we do suffer the most. All people deserve care. Allocating care on the basis of suffering serves only to exclude those who are deemed unworthy. We are all worthy.

That isn't exactly what I was saying.

First of all, not every single disease is going to get the same amount of funding. So how do you make the case to agencies doling out funding that your disease deserves more when it is coming out of a fixed budget that is zero sum unless the total budget is increased?

It's really as simple as saying that we have to make comparisons in quality of life and quantity of life years impacted to advocate for our diseases to get commensurate funding with disease burden . And this isn't a crude "suffering contest' bc nobody's saying there's some prize to win for suffering more. Or that there's virtue in suffering. It's simply that we should use the best measures we have for disease burden and quality of life to allocate funding. And the reason we need to occasionally point this out is that despite that being how NIH usually does things they're not doing it with our disease. Most illnesses they choose to allocate funding for based on DALY or other metrics of quality of life, numbers of sufferers etc . Now , mortality is part of it. But part of the issue with me/cfs is this cultural conception that mortality is the eorst possible outcome. For some cultures death doesn't cause such anxiety and death is seen as something which is an egress to another life or world. For our culture it's the ultimate bad thing and we keep people alive on machines even when their quality of life is low. So our quality of life in me/cfs has been measures in objective studies to be extremely low , and it's a less and less uncommon disease , and yet funding remains far lower than scientists who study this say it should be. Leonard jason says that illnesses with comparable disease burden would have about 500 million a year in funding now. Yet we have 15. There's no way to say "this is unjust and needs to be corrected " without pointing out relative differences in quality of life and disease burden. It doesn't have to be done in an offensive way and yes we can still have solidarity. But it does have to be done. And it seems like people will always compare diseases and they already do this in a negative way with me/cfs and assume it is like mild chronic fatigue or depression when it is more disabling than many MS or lupus cases and far more common, when it is currently more disabling and painful and less treatable than hiv aids. I actually have seen me/cfs doctors, prominent ones, who treat other diseases too, making this comparison. It's not bc they want a suffering contest either. It's bc they understand the human mind seeks to compare things to understand what it doesn't yet directly know . And again, even if you don't like rhetoric saying me/cfs is as bad as x or y disease , we still have to acknowledge the science and say "this specific metric says me/cfs has a lower quality of life than these other diseases". DALY is one of the metrics but not the only one. I'll try and dig up the others

 

[frozenborderline]

Here is a comparison that discusses mortality and has the quality of life metrics : https://openletteropenmedicinefoundation.com/me-cfs-is-a-living-death/

 

[Rvanson]

Yes I know there were earlier outbreaks. Tahoe was what turned the disease into a named syndrome with ICD code and everything , in the US

Actually the ME/CFS patients in Tahoe and Incline Village are millionaires, since you can't afford to live there if you are not wealthy. I suspect that their attorneys helped to get the ICD code,
but this disease was called chronic FATIGUE syndrome for far too many years, and the normies just don't get it. As we all know, ME/CFS goes far past "fatigue" with many symptoms. Thus the "Yuppie Flu" comments in 1984 when they had the large breakout of this disease. And thus the worse one suffers from it, the more they might think of ending it, since constant loneliness takes 15 years off a person's life, as people who have studied its effects, this is a blessing, not a curse.

 

[frozenborderline]

Actually the ME/CFS patients in Tahoe and Incline Village are millionaires, since you can't afford to live there if you are not wealthy. I suspect that their attorneys helped to get the ICD code,

I don't think that all or most of the patients were particularly wealthy. A lot of fancy resort towns and places have regular residents that don't have second homes there that may be less wealthy. And it was a long time ago when housing prices were different.

Also, whatever the income or asset level of those patients , they were very sick and they were ignored by the cdc and i dont think theres any way in which wealrh helped them.

In truckee there was an outbreak among schoolteachers. I know what teacher salaries are like and I doubt those were rich people. In incline village not just the Staff but many of the students at the high school were sick.

I dont understandwhat youre saying about the attorneys.

As we all know, ME/CFS goes far past "fatigue" with many symptoms. Thus the "Yuppie Flu" comments in 1984 when they had the large breakout of this disease. And thus the worse one suffers from it, the more they might think of ending it, since constant loneliness takes 15 years off a person's life, as people who have studied its effects, this is a blessing, not a curse.

I have no idea what you're saying. There is no aspect to this illness that is a blessing.

Anyway there were nearly simultaneous outbreaks in places like lyndonville NY that certainly weren't wealthy. And I don't think everyone who lived full time in Tahoe was wealthy ay that time. Some resort adjacent towns like taos get that reputation while having plenty of middle class and poor people.

 

[lenora]

I have to agree with @lenora . Yes, our disease cases immerse suffering, but other diseases are no picnic either. I am uncomfortable with the- we are suffering the most, so we deserve the most- narrative, even if we do suffer the most. All people deserve care. Allocating care on the basis of suffering serves only to exclude those who are deemed unworthy. We are all worthy.

I think it's better to make common cause across illnesses. People with chronic illness, whatever that illness is, understand the world differently than healthy people. We know the importance of compassion and helping each other. It's the only way to survive these illnesses. We also know that anyone, anytime, anywhere can be struck down. That illness is more a matter of bad luck than personal responsibility. None of us bear blame for our conditions and we should not be treated as though we do. Health is a gift, not something you earn with hard work. Illness is a hardship to be carried together.

Yes, we need more advocacy. But lets do it through building connections, not separation.

Hi @wabi-sabi. How do we know that we suffer the most? You're right....we suffer, but is it going to make our cause better by rating us?

I'm not saying that each day is fun, fun, fun....but MOST of us have comforts that we simply take for granted because we don't know any better. Have bad times and bad days....it's OK, but we are now worse off than everyone else?

We may get less sympathy from those we think we deserve it from, but no, in a certain sense this illness can't control my very own thoughts because I won't let it.

We begin gambling the day we're born, whether we know it or not. Yes, we suffer but please do something that can provide hope or understanding to someone else. Yours, Lenora