The $35 billion race to cure a silent killer that affects 30 million Americans

[WillowJ]

So many in America just want a pill to solve their problems. They do not want to face reality and make changes.

That's kind of unfair. I have a family member who worked hard at weight control almost their entire adult life (almost because sometimes they were a healthy weight, except lately when after cancer and septicemia they were underweight).

I have seen doctors on Twitter say they didn't feel startled that exercise and CBT didn't work for ME because exercise and diet also doesn't work for weight loss. But they hadn't been given other tools in either case.

All predominantly lifestyle causes!

No, again cholesterol for example can be cause either by diet or by genes. If it's a genetic cause, you can change your diet all you like and it won't change your blood cholesterol.

It's never as simple as "people don't want to take responsibility." Cooking food is an opportunity cost. For us that's really obvious, but it is for healthier people, too.

Of course, the fact remains that other diseases get funded and ME gets left out, but it's not that the other diseases aren't worthy of funding or don't need it. Everyone should get funding. The government is supposed to be fair and not discriminate or pick favorites. (yes, it does amazingly badly at this, but that's how it's supposed to work.)

It's an interesting point that other conditions which are inappropriately blamed on patients are getting funding while we are still not. But they'd never admit to that being the reason we got left for dead in the dust anyway.

 

[Jonathan Edwards]

I think the evidence is very much against afoolproof homeostatic mechanism. In general populations of mammals do not get fat because they breed until the number of people more or less matches food supply. In recent centuries whenever people have been freed from this by wealth they have got fat. So it speeds the homeostat does not stop overeating.

I suspect that the other main factor has been the availability of a ready supply of oligosaccharides. (Cane or beet). Honey was never producible in tons. Cats and dogs also get obese if they have free supply of their favourite flavoured calories. Evolution will only have bred controls for things available in previous generations.

But what seems to me to have changed most in the last fifty years is the environment in terms of popular lifestyle conventions. Fifty years ago most people either limited what they put on the table because it cost too much or they considered it wasteful. That seems to have gone. And fifty years ago everyone seemed to understand that if you limit calories to your metabolic demands you do not get fat. Now people seem to have lost touch with that simple reality.

To my mind there is no parallel with ME because for ME there really is no choice. Drawing an analogy seems to me to weaken the whole case for ME.

 

[Barry]

The documentary you’ve seen is telling a partial falsehood. If 70% of obesity is genetic and completely out of one’s control than why haven’t we had similar rates of obesity even 30-40 years ago?

I suspect that in times past most people have not had any choice anyway. In evolutionary terms humans have not needed any significant built-in weight control mechanisms until very recently, because the effort required to acquire food, and the calorie intake of that food once acquired, have pretty much matched, or been on the nutritionally deficient side of what is right. I suspect that if a study was done of people rich enough to eat whatever they wanted in times past, the obesity percentages might be a very different.

ETA: I realise @Jonathan Edwards already said akin to this.

 

[Trish]

And fifty years ago everyone seemed to understand that if you limit calories to your metabolic demands you do not get fat. Now people seem to have lost touch with that simple reality.

Funny you should say 'fifty years ago'. It was almost exactly 50 years ago I went from being a skinny teenager to putting on a couple of stone in a year. The difference was a change of environment from a home where I was secure, had healthy, tasty meals plus access to bread, butter and as much fruit as I wanted, to a University Hall of residence where I was lonely, the food was overcooked and awful, and we had a 24 hour a day access to an unlimited supply if sliced white bread and butter.

I think the key fact for me was not the quality or availability of the food, but loneliness. In other words, I was comfort eating. Slices of hot buttered toast gave me moments of pleasure. I was literally 'filling a hole' in my life.

Life moved on and I simply couldn't shift that extra 2 stone, however happy or unhappy I was, and gradually added another stone, no matter how hard I tried to diet. I wasn't obese, but I had gone from size 10 to size 16 and I hated it. With various diets my weight see-sawed for years. I really did try hard to lose it.

Until over 10 years later I went gluten free (not for slimming purposes, but for gut and migraine problems). Suddenly all my food cravings vanished. I found it easier to eat healthily without craving food, and my weight normalised to size 12. It was not about will power, or being a better person, or even my psychological state, or any change in life circumstances, it seemed to be a physiological loss of craving.

So I accept that putting on weight is, of course, only possible with calories consumed, but I don't judge people who can't lose weight they have put on. I know from experience how hard it is, and how much a mix of ready access to the 'wrong' foods, psychological factors beyond our control, and what feels like real physiological cravings make weight loss extremely challenging, and for some people in some circumstances, pretty impossible.

ME is one of those circumstances where weight loss is extra difficult. Those of us who are pretty immobile have much reduced calorie needs, can't exercise to help reduce weight, often can't afford healthy foods, can't prepare healthy foods, and are not in a psychologically strong place to deal with it because of the already stressful situation of being very ill, in pain, misunderstood, not getting proper care etc etc.

So let's by all means agree that in order for the body to store calories as fat, those calories have to have been eaten, but let's not judge those who find ourselves in the unhappy position of being heavier than we would like to be.

I agree obesity it's a different type of disorder to ME, but that need not mean we judge individuals who are obese.

 

[JaneL]

Some of these so called “lifestyle diseases” are increasingly affecting slim people so it’s not all about excess calories. Type 2 diabetes for example:

http://theconversation.com/type-2-d...d-slim-heres-what-we-should-do-about-it-61283

From the article:

Removing the stigma
There is a significant stigma and shame attached to the diagnosis of type 2 diabetes, particularly in younger patients. This adds an unfortunate barrier to successful treatment. Until this is improved, we will continue to under-treat our patients and misinform our health providers.

Isn’t this the same as the stigma that ME sufferers face? With the same consequences: misinformation, lack of funding, and under-treatment of ME patients.

 

[Barry]

Until over 10 years later I went gluten free (not for slimming purposes, but for gut and migraine problems). Suddenly all my food cravings vanished. I found it easier to eat healthily without craving food, and my weight normalised to size 12. It was not about will power, or being a better person, or even my psychological state, or any change in life circumstances, it seemed to be a physiological loss of craving.

So I accept that putting on weight is, of course, only possible with calories consumed, but I don't judge people who can't lose weight they have put on. I know from experience how hard it is, and how much a mix of ready access to the 'wrong' foods, psychological factors beyond our control, and what feels like real physiological cravings make weight loss extremely challenging, and for some people in some circumstances, pretty impossible.

I would thing humans, like many other animals, have evolved to crave food when it is available, because food availability was far from continuous, but sporadic. In rare moments of plenty, piling on the calories beyond immediate requirements, would have been nature's energy storage mechanism, to help see people through the lean times. In fact I would think for humans this trait would have evolved into their ancestral line long before evolving into humans.

 

[Dolphin]

Of course, the fact remains that other diseases get funded and ME gets left out, but it's not that the other diseases aren't worthy of funding or don't need it. Everyone should get funding.

This reminds me of something: some people look down their noses at calls to fund-raise or donate and think lobbying for research is morally superior to calls to fund-raise or donate. However, the usual effect of successful lobbying for research is that other conditions will get less.

 

[leokitten]

That's kind of unfair. I have a family member who worked hard at weight control almost their entire adult life (almost because sometimes they were a healthy weight, except lately when after cancer and septicemia they were underweight).

I have seen doctors on Twitter say they didn't feel startled that exercise and CBT didn't work for ME because exercise and diet also doesn't work for weight loss. But they hadn't been given other tools in either case.

No, again cholesterol for example can be cause either by diet or by genes. If it's a genetic cause, you can change your diet all you like and it won't change your blood cholesterol.

It's never as simple as "people don't want to take responsibility." Cooking food is an opportunity cost. For us that's really obvious, but it is for healthier people, too.

Of course, the fact remains that other diseases get funded and ME gets left out, but it's not that the other diseases aren't worthy of funding or don't need it. Everyone should get funding. The government is supposed to be fair and not discriminate or pick favorites. (yes, it does amazingly badly at this, but that's how it's supposed to work.)

It's an interesting point that other conditions which are inappropriately blamed on patients are getting funding while we are still not. But they'd never admit to that being the reason we got left for dead in the dust anyway.

I believe you’ve misunderstood and misinterpreted my main points.

I said I don't believe NASH should be getting $35 billion while ME gets next to nothing, not that NASH shouldn't get funded.

I said many, not all, people in America just want pills to solve their health issues and want to do very little or nothing on their own to make lifestyle changes (see cardiologist article I linked in thread)

I said predominantly, not universally, lifestyles diseases. You could always cherry pick examples where it's not but you would be very foolish to refute that the majority of the causes of NASH/NAFLD are due to lifestyle, where genes only play a minor role but a change in lifestyle would actually solve their problem.

 

[leokitten]

Some of these so called “lifestyle diseases” are increasingly affecting slim people so it’s not all about excess calories. Type 2 diabetes for example:

http://theconversation.com/type-2-d...d-slim-heres-what-we-should-do-about-it-61283

From the article:


Isn’t this the same as the stigma that ME sufferers face? With the same consequences: misinformation, lack of funding, and under-treatment of ME patients.

It’s still lifestyle and this is all still cherry picking. Sure it’s not the whole story, but even the top of your article admits lifestyle is effectively the whole story in the vast majority of people. They are just trying to shed light on other factors that play a role in specific groups which are frankly a small minority.

What I find disheartening in this thread is that evidence that genes or other non-lifestyle factors play some role in some specific groups is being blown up to the explanation for everyone. These are lifestyle diseases, without quotes, no matter how much one wants to believe that isn’t the case.

Sure specific ethnic groups like indigenous people can be at a higher risk of developing diabetes due to genetics, but only if their lifestyle changes and they start eating a standard western diet. Sure the children of mothers who had gestational diabetes are at a sighter higher risk, but again only if they start eating a standard western diet. Everything ends with, “only if they start eating a standard western diet”. So what is really the cause here?

No actually it’s not the same as ME. With diabetes there is no lack of funding and there is a myriad of approved drugs and treatments.

 

[leokitten]

Do you all know that there is an effective treatment for type 2 diabetes? In children, in adults, in everybody, it will reverse the disease and put it into remission.

While for decades the medical-industrial complex has told the the public that type 2 diabetes was irreversible and could only be managed with a variety of medications and other treatments for the rest of a person’s life, which sadly do not stop disease progression and worsening QoL, but have the amazing side effect of making some people very rich.

In the last few years research and empirical evidence has shown that changing your lifestyle, in this case your diet, by doing intermittent fasting, very low carbohydrate, or caloric restriction diets, will reverse type 2 diabetes and put it into remission. People stop needing, or greatly reduce use of, diabetes meds depending on how severe diabetes was at baseline. We knew this already because it was obvious, but I guess science just has to wake us up sometimes.

Research has also shown that Roux-en-y gastric bypass surgery can also effectively treat diabetes in obese people people, again depending on the severity of their diabetes at baseline. It forces the person to perform caloric restriction lifestyle changes, though it only works for a couple years or so without associated major lifestyle changes. The majority of patients who do not also change their lifestyle after the surgery will eventually relapse. Bariatric surgery essentially gives you helping hand and time window to get out of the hole and make lifestyle changes that have to made.

To be a realist again, I do not see in the foreseeable future a drug or other treatment that will effectively treat obesity, type 2 diabetes, NAFLD, cardiovascular disease, i.e. predominantly lifestyle diseases, without people making a major change to their lifestyle. It will not work no matter how much money you throw at it.

With NAFLD the medical industrial complex has found a wonderful and brand new source of revenue. Of course they want to spend billions of dollars to develop treatments for it. Looking at their track record with every other lifestyle disease we can be fairly sure that they will develop treatments that will only somewhat slow down disease progression and worsening of QoL, all while ensuring that you will be taking such treatments for the rest of your life. Sounds wonderful!

Look, the world around us, with the availability of cheap, caloric, drug-like addicting foods, commercials selling them, food industry manipulating us, etc, etc, this list goes on, is not going to change in the foreseeable future. It’s just not.

Science and medicine are not going to save us from these problems either. Major lifestyle changes are the #1 most crucial thing that a person must do in order to get better from a lifestyle disease, otherwise things will just continue to get worse as they have been. Look at type 2 diabetes, cardiovascular disease, obesity, metabolic syndrome, with all the billions of dollars spent and all treatments available they are still getting worse and only saving people from dying while not truly making a difference.

Also to reiterate, which I’ve written in another post on this thread, I am not talking about the minority of people who get such diseases due to another non-lifestyle disease, for example ME. The vast majority of people though do not fall into this group.

 

[NelliePledge]

Obesity is a problem I know that more than most people on this forum. I perfectly understand that there are some things that - given the right information and support - people can do to try to address that problem. I’m arguing that unless you are in the shoes of any individual struggling something like obesity or alcoholism you can’t know what it that battle is like. Pick on the system that pushes people into these situations not the people caught in them.

 

[leokitten]

Obesity is a problem I know that more than most people on this forum. I perfectly understand that there are some things that - given the right information and support - people can do to try to address that problem. I’m arguing that unless you are in the shoes of any individual struggling something like obesity or alcoholism you can’t know what it that battle is like. Pick on the system that pushes people into these situations not the people caught in them.

Who’s picking on people? I don’t see where I’m actually doing that in this thread.

I’m simply stating two things:

Humanity will likely not effectively treat obesity, diabetes, cardiovascular disease, metabolic syndrome, NAFLD, i.e. lifestyle diseases without putting crucial lifestyle changes at the heart of any treatment plan. Drugs and other treatments won’t work without it and just serve to make people immensely rich off the backs of others. It’s not picking on people when you state the fact that for lifestyle diseases you will most likely continue to get worse, even on all the latest and greatest drug or surgical treatments, if it’s not accompanied by major lifestyle changes. It’s not shaming people, it’s saying this is what must be done because there simply is no other way.

Spending $35 billion to develop treatments for NAFLD is saddening to me given that we cannot seem to find any money for ME. Given the medical industrial complex’s track record it will likely be the same as for all the other related lifestyle diseases, keeping you alive and slowly deteriorating so you can make them a ton of cash on their treatments before you die of complications from the disease. Only with major lifestyle changes will NAFLD be effectively treated, we do not need to spend $35 billion to know that I can tell you that for free today.

Obesity is a problem and our western diet and civilization is the major contributor to that. It makes it a terrible uphill battle. I’ve stated this before, we won’t be able to change western civilization or the system anytime soon, so there’s only one thing left that is in one’s control and that is lifestyle. It sucks but that’s it and there will likely never be a way to circumvent it. So unfortunately major lifestyle changes are the only way forward, in combination with bariatric surgery (the only other effective treatment) or by itself.

 

[leokitten]

I’m arguing that unless you are in the shoes of any individual struggling something like obesity or alcoholism you can’t know what it that battle is like.

I am effectively in the same shoes so I think I know what the battle is like.

My ME has steadily worsened to the point where since last summer I’ve had to eat a very strict (< 20-25 carbs/day) ketogenic diet every day in order to not be house and mostly bedbound. In addition to that, because of the ME-related loss of muscle tissue, metabolic changes, and far reduced ability to do physical exertion I have to eat fewer total calories than I used to otherwise I gain weight. I also get this very strong carb hunger when I’ve overexerted and am heading towards a crash due to ME.

A strict ketogenic diet is not fun at all and can be complete hell at times. It’s a tremendous lifestyle change that I will have to do for the rest of my life since I do not see a treatment for ME on the horizon. While I still have the choice I do not want to spend my life in a dark room in bed so it is what it is and I’ve made this change for good.

 

[Sisyphus]

From my perspective as an overweight person if you’ve not been there don’t judge. Especially people with ME who are and have been judged should know better and have more empathy. And my understanding from a documentary I saw recently (will try to find a link) genetics can contribute a substantial part up to 70% I think it was said of why an individual is obese.

What? The food industry has mind control? I realize you are not advocating for that point of view. it’s amovie plot, not reality. Food scarcity was the norm for the entirety of human existence until the last blink of history. We are not made to have more than enough food available more than enough of the time.

The world now produces vast amounts of food in all forms, which means that a vast variety of enticing yet cheap food products are be made out of them. A Huge supply for something which is naturally in constant demand means it is available everywhere. It’s up to us to eat what we need instead of what we want.

That’s going to be extremely tough for us with this disease, because the amount of food we need is ridiculously small, while we or -most- have almost nothing enjoyable to do, so the amount of food we want gets jacked. None of that is Burger King’s fault.

 

[WillowJ]

This reminds me of something: some people look down their noses at calls to fund-raise or donate and think lobbying for research is morally superior to calls to fund-raise or donate.

Not sure why you are @ mentioning me with that.

However, the usual effect of successful lobbying for research is that other conditions will get less.

My idea is for Congress to increase the NIH budget overall with some amount dedicated to ME (and it would be good for some to go to other neglected items, too), so nobody would have to be reduced. I think this is the best US NIH play. No idea if it would work in other countries, as I don't know how things work elsewhere.

 

[Cheshire]

It’s not picking on people when you state the fact that for lifestyle diseases you will most likely continue to get worse, even on all the latest and greatest drug or surgical treatments, if it’s not accompanied by major lifestyle changes. It’s not shaming people, it’s saying this is what must be done because there simply is no other way.

I think everybody agrees with the fact that obesity rates would decrease if people ate more healthily. That is obvious. But major lifestyle changes are not easy for many complex reasons (if it were, there would be no problem anymore). Saying to obese people "just change your lifestyle" is akin to saying to depressed people "pull yourself together", hoping it will magically cure them.

 

[Dolphin]

Of course, the fact remains that other diseases get funded and ME gets left out, but it's not that the other diseases aren't worthy of funding or don't need it. Everyone should get funding.

This reminds me of something: some people look down their noses at calls to fund-raise or donate and think lobbying for research is morally superior to calls to fund-raise or donate.

Not sure why you are @ mentioning me with that.

Firstly, to make clear to other people, I simply quoted your post. Talking about @ might suggest that I wrote @WillowJ in the post separately, which is not what I did.

It was nothing personal. As I said, your post reminded me of something:

One person was arguing lifestyle illnesses should get less/should not get more.
You pointed out that you didn't wish other illnesses to get less*.

So it reminded me that in most countries that a certain amount will be set aside for the research funding bodies. If an illness like ME/CFS gets an increase of $X/£X/€X, the research budget generally won't go up by X. The net effect will be other illnesses will get less.

As I said some people look down their noses at calls to fund-raise or donate and think lobbying for research is morally superior to calls to fund-raise or donate, but I question that for the reasons I have stated. I don't recall you saying anything like this so it wasn't personal (perhaps I should have said it, but I didn't consider somebody might consider it that way).

If I didn't quote the post in question, it wouldn't have been clear how my comment was connected to the thread.



*I imagine there are lots of people who are like you who don't want all sorts of illnesses including multiple sclerosis, lupus, etc. (i.e. not just "lifestyle diseases") getting less so it didn't seem to me to be a personal comment.

 

[leokitten]

I think everybody agrees with the fact that obesity rates would decrease if people ate more healthily. That is obvious. But major lifestyle changes are not easy for many complex reasons (if it were, there would be no problem anymore). Saying to obese people "just change your lifestyle" is akin to saying to depressed people "pull yourself together", hoping it will magically cure them.

This is an oversimplification and misrepresentation of what I’ve posted on this thread.

 

[Inara]

Cats and dogs also get obese if they have free supply of their favourite flavoured calorie

I just know it from dogs and horses: There are dogs/horses that restrict their eating by themselves if food supply is abundant, and there are dogs/horses that just eat and eat. I don't know why.

 

[WillowJ]

Talking about @ might suggest

You're right, I said mention when I ought to have said quote. I can't vocabulary anymore. :/