The Truth About the Ice Bucket Challenge

[SDSue]

Below is the infograph from an interesting article today on Vox entitled:

"The truth about the Ice Bucket Challenge: Viral memes shouldn't dictate our charitable giving"

http://www.vox.com/2014/8/20/6040435/als-ice-bucket-challenge-and-why-we-give-to-charity-donate

 

[SDSue]

PS: @Sushi I forgot how to make the link small.

 

[Sushi]

PS: @Sushi I forgot how to make the link small.

In this case, you could copy the URL of the article, select the title of the article in the post you are writing, then click on the link button above. (It looks like a link in a chain).

I am answering here instead of privately as other may have the same question!

Sushi

 

[Sherezade]

We should make an Ice Bucket Challenge for CFS/ME but not with iced water please...

I am very serious, no one knows about this illness. Me, before getting sick, i had no idea about it, and i worked in a pharmaceutical company!. Also, some donations for the cause would be nice, specially, for the lipkins studies.

 

[WillowJ]

doing some kind of variation is discussed in this thread:
http://forums.phoenixrising.me/index.php?threads/cfs-me-needs-to-go-viral.32141/

I saw some criticisms of the ALS challenge: I think the applicable one for copying the idea (besides copying the idea) is that water is scarce globally, so may be best not to use water for purpose other than drinking or irrigation. EDIT: and bathing

 

[DanME]

Hi,

Thanks for the link, @SDSue.

I have to say, I highly disagree with nearly all of the arguments in the article.

Firstly, ideally medical research shouldn't be charity driven, but primarily financed by the state and the government. Tax money should be the base for scientific research and in many cases it is. Especially research for the big diseases of modern society (like heart disease and diabetes) is heavily funded by the government (to be fair, I am biased by growing up in a country, where the state has much more influence than in the US).

Secondly, the author compares apples and oranges. Heart disease, Diabetes and COPD kill a lot of people, but are on the one hand already very well researched and on the other hand highly preventable (and sometimes curable) through life style changes (except Diabetes Type I). With ALS, HIV and most cancer types this is not the case.

Furthermore, I oppose the utilitarian view, that maximising saved lives is our highest priority. This would mean, we should cancel all our efforts to find cures for rare and very rare diseases to save money for the big ones. This cannot be fair.

The main difference between ALS and and all the other diseases mentioned in the article is, that we haven't found anything yet, which could help patients with ALS. The research is stuck and needs huge amounts of money to find a possible cure (or at least a relief).

I think charity has to jump in, when the disease is rare (ALS), not recognised by the state and the medical community (ME) or is mainly a problem of the developing world (Malaria), which has no money to fund anything.

So in conclusion, in the case of ALS viral memes should indeed dictate our charitable giving and I am really happy for them it worked so well.

PS: I saw yesterday a calculation, that all the water used in the Ice Bucket Challenge equals the total water consumption of the US for 3 seconds.

 

[Sasha]

PS: I saw yesterday a calculation, that all the water used in the Ice Bucket Challenge equals the total water consumption of the US for 3 seconds.

Or outside my window here in England.

 

[SDSue]

Thanks for your views, @DanielBR, I'm sure there will be many who agree with you.

Unfortunately, I simply don't have the energy today for political views or discussion. I just thought the comparison chart was fascinating.

I think I'll sit this one out and watch from the sidelines. Cheers!

 

[DanME]

Thanks for your views, @DanielBR, I'm sure there will be many who agree with you.

Unfortunately, I simply don't have the energy today for political views or discussion. I just thought the comparison chart was fascinating.

I think I'll sit this one out and watch from the sidelines. Cheers!

No worries. I love political and philosophical discussions and when I read the article, I thought, ok, the author is totally wrong. I have to deconstruct his arguments.

The chart is still fascinating. And my entry wasn't meant against you, but against Vox.

The main point should be, what can we do for our cause!!! Cheers!

 

[Esther12]

It's got a lot of people to donate to medical research when they'd have previously donated nothing, got more people talking about the benefits of charitable donations... sounds good to me.

(No way I'm doing it though!)

 

[SDSue]

No worries, @DanielBR. I, too, loved political discussions in my pre-ME world. So if anyone joins you, I'll be cheering you on from the sidelines, eating popcorn and drinking electrolyte solutions!

 

[NK17]

Fascinating discussion @SDSue and @DanielBR which I'm too watching from the sidelines, while taking a warm epsom salt bath (no worries I recycle the water by giving it to plants in the backyard , drinking electrolyte enriched water and eating olive oil potato chips.

I don't think we can piggy back ride on the ALS ice bucket challenge right now, it would not work, for many different reasons, one of which is the very short attention span of the public.

It would be bad timing, but I could be wrong .

 

[Sherezade]

I agree with @DanielBR, research and medical studies should be supported by public funds, because our health cannot be in hands of pharmaceutical or insurances companies. I have always supported the idea of a public health system, and if the governments don't want to spend too much money in our healths, then spend money in preventing diseases. For instance, the alarming raise of diabetes type II worldwide is caused by the junk food, and refined sugars that we consume. I mean, you don't need to be a genious to know that. Heart diseases are rather easy to prevent too. But when it comes to genetic or rares diseases, there's not much to do, they have to spend the money in research and in treatments. If they charges us so much in taxes, at least they have to give us something in return.

 

[Tito]

Heart disease, Diabetes and COPD kill a lot of people, but are on the one hand already very well researched and on the other hand highly preventable (and sometimes curable) through life style changes (except Diabetes Type I). With ALS, HIV and most cancer types this is not the case.

In my view, HIV is probably the most preventable illness on the planet. And certainly well before heart diseases that have some genetic components.

For instance, the alarming raise of diabetes type II worldwide is caused by the junk food, and refined sugars that we consume. I mean, you don't need to be a genious to know that.

The Indians are the most affected by type 2 diabetes. Still, they have a normal weight, a lacto-vegetarian diet and they walk large distances on a daily basis. So junk food and refined sugars are obviously not the only causes (or shall we say, correlations). It is believed a high folate and low B12 diet during foetal life and low birth weight mainly determine cardio-vascular disease risk in later life.

 

[Gingergrrl]

The other point I want to add is that not only diseases that are "fatal" should be deemed worthy of research money. There are many diseases with ME at the top of the list where you are robbed of living your life but you do not die so no one bothers to research or solve it.

 

[Little Bluestem]

Everybody dies of something. Heart disease is a fairly common in what could be considered a 'normal' end-of-life. That may be part of why it has so many deaths.

 

[DanME]

In my view, HIV is probably the most preventable illness on the planet. And certainly well before heart diseases that have some genetic components.


The Indians are the most affected by type 2 diabetes. Still, they have a normal weight, a lacto-vegetarian diet and they walk large distances on a daily basis. So junk food and refined sugars are obviously not the only causes (or shall we say, correlations). It is believed a high folate and low B12 diet during foetal life and low birth weight mainly determine cardio-vascular disease risk in later life.

Yes. You are right about HIV, it is totally preventable. But not curable through life style changes. Once you have it, there is nothing you can do to get rid of it. In comparison, there are several good studies, which show, that you can reduce your risk of a second stroke or second heart attack significantly, if you change your diet and do a lot of sports (probably even if you have a genetic risk). Interestingly only a total change is beneficial, small steps are not enough.

I don't know about the Indians. But junk food and high sugar intake are definitely a cause of type 2 diabetes. Again, with reducing weight, a healthy diet and a lot of sports a type 2 diabetes can completely disappear.

 

[Alea Ishikawa]

Ah, I thought you were going to post on another truth: the fact that the regular Ice Bucket Challenge funds the ALS Association, which supports embryonic stem cell research.


The graphic posits an interesting thought. It would make sense, perhaps, to categorize and weight diseases by the number of deaths, quality of life, and/or expected life span. Maybe other factors. What about diseases which are a result of lifestyle choices, such as voluntarily consuming known carcinogens? Or genetics?


I'm happy that persons with ALS are receiving attention and funding for a potential cure. Their quality of life looks pretty harsh with a potential of paralysis and a life expectancy only 2-5 years after diagnosis. To me, that's worse than ME/CFS, and that person is more in need of a cure than I would be.

I think Vox makes a good point: helping an ill person in a developed area can make less of an impact monetarily than helping in less-developed nations. There's conversion rates, cost of living, cost of treating preventable and curable diseases vs. researching a rare disease. (It doesn't make it any less hard for the person still sick at home, though.)

But I think people should donate where they want to donate their money. Going through the motions is going to help folks, but it's going to be meaningless in another and even more important way. If your sister came down with cancer, and you watched her suffer, and then after her death felt compassion toward other cancer patients and wanted to donate to cancer research, I'd say, "go for it."

 

[Sasha]

I was talking about this challenge with someone last night. She said that she really disapproves of the challenge aspect of the ice bucket thing in that it's like a chain letter in some ways. It puts social pressure on people to do something whether they want to or not. I think that's true - it's why it's been very successful but when I imagine whether I'd challenge someone, I don't think I would - I'd feel very uncomfortable putting specific people on the spot like that.

 

[Revel]

I agree, @Sasha. Also, like Neknominations, the Ice Bucket Challenge is becoming more extreme. I just watched a video of a woman undertaking the challenge whilst sitting bareback on a horse. I'll leave it to your imagination as to what happened next (poor horse).