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This kid tried to quit band, teacher had other plans

JiggaJonson says...

Just a follow up:

The research and trials they are doing for NPC are a testament to modern medicine and science. The doctor who is doing the trial with us dramatically changed the course of my family's life. Click here if you want to feel better about all that: https://fightnpc.com/en/drug_trials

Just LOOK at what a difference it makes in other mammals, and they already see very similar results in humans they are testing on. They've managed to nearly halt the progression of symptoms in most patients. :-D

See also: http://www.fiercepharma.com/animal-health/cats-and-febreze-may-hold-key-to-treating-devastating-niemann-pick-disease

JiggaJonson (Member Profile)

JiggaJonson says...

I was in tears for months when I saw that, but I had to keep it together and keep raising my little girl. So I'd be doing finger paints with a happy face and then disappear into the bathroom and weep for a bit. It was a pretty dark time in my life.

The research and trials they are doing are a testament to modern medicine and science though. The doctor who is doing the trial with us dramatically changed the course of my family's life. Click here if you want to feel better about all that: https://fightnpc.com/en/drug_trials

Just LOOK at what a difference it makes in other mammals, and they already see very similar results in humans they are testing on. They've managed to nearly halt the progression of symptoms in most patients.

oritteropo said:

Thanks for the promote. I'm not sure if I really wanted to click the link though, it's exactly as horrifying as you promised

This kid tried to quit band, teacher had other plans

JiggaJonson says...

I cried. Idk if I ever said anything here, but I've been only on occasionally because I had a daughter born with a rare genetic disorder that my wife and I both carried recessively.

It's called NPC which is an acronym for Niemann-Pick Disease Type C (it also makes it annoyingly difficult to search for because I get all kinds of results about non player characters).
http://nnpdf.org/overview/#NPC

The disease itself is fairly horrifying. That sounds like strong language, but click on this link to see the progression of the disease if you too want to cry: http://nnpdf.org/the-disease/the-progression-of-niemann-pick-disease/

Fortunately, we're part of an experiment that is treating people with a very promising success rate for halting the progression of symptoms.

*promote

Mark Blyth: Globalization and the Backlash of Populism

radx says...

*doublepromote

Mark's been on the money since about the time he wrote "Austerity: The History of a Dangerous Idea", but there have been two significant developments in Europe that he seemingly didn't see coming: Portugal and the UK.

The Left Alliance in Portugal has basically been giving Schäuble the finger for two years now, with their unilateral end to austerity. How dare they defy the master of coin?! If Schäuble says you need another round of austerity, by God, you better tighten your belts, even if they are already around your neck.

Unsurprisingly, everyone going along with austerity without having a completely export-dependent economy is in deep doo-doo. Meanwhile, those pesky Portuguese actually managed to massively reduce unemployment, despite running a deficit that is entirely too small for their current situation. But that's a different story.

And then there's the UK. There's Corbyn. Tribune of the Plebs. Managed to get the youth voting by offering actual left-wing policies (the "radical youth", as the NYT likes to call them, while claiming that the warmongering, Constitution-shredding, wage-depressing, ecosphere-destroying "centrists" are not the real radicals). Managed to turn quite a lot of UKIP voters around as well. Within striking distance of the Tories, despite the media running 24h a day of drivel like "Jezza's Jihadi Comrades" -- Goebbels would be ashamed of the crudeness of the propaganda campaign by the Sun/Daily Mirror/etc.

The populist left is back, bitches. Corbyn and Sanders are the first steps past the neoliberal warmongers of the Third Way. The Obama experience of a corporatist disguised as a left populist may have given us The Orange One, but it also put another nail into the coffin of neoliberalism.

Antonio Gramsci, founding member of the Italian communist party, who was killed by the fascist regime of Mussolini, gave us the appropriate description of our time:
"The crisis consists precisely in the fact that the old is dying and the new cannot be born; in this interregnum a great variety of morbid symptoms appear."

That's your Trump. That's your opioid epidemic. That's the EU's austerity program in Greece, doing twice as much damage as the German occupation in WW2.

What Deadly Diseases Look Like On Your Body

noims says...

I'm reading a book where an 18-month-old just died of diptheria... given the make-up job in the video I'm just glad the author didn't go into the symptoms.

At least smallpox was wiped out before the anti-vax movement came along.

New Rule: The Lesser of Two Evils

enoch says...

@newtboy
i like the 'failing liver" analogy.
appropriate and easily understood.

and i can understand where milkmandan is coming from,but my perspective is more aligned with yours newt.

what consistently baffles me,is how so many people are willing to simply accept this short term strategy from our politicians.

there is no surprise when corporations push for this,they are just focusing on their own interests and bottom line,which is short term profit.

or the politicians who bow to their neoliberal masters to receive those tasty campaign contributions.

or even the banks,who again focus on their short term gains.

these players are all behaving as they always have:for their own self interest.so there should be no shock or surprise when they act exactly as they have always acted.

but when i see everyday,normal people defend the behavior and actions of oliticians,financial institutions and multi-national corporations.it baffles me as to why they would choose to do such a thing.

we can understand why those players seek to retain a system which benefits them,their shareholders and their bottom line,but that system no longer serves the interests of the people,community and society as a whole.

so why make arguments defending it?

it is,quite frankly,killing us slowly as a species.

look at germany.
that country has slowly been recruiting,educating and now poised to corner the market in:new energy,renewable energy and are leading the world in breakthrough technologies in all energy fields.

germany has long played the long game.
they now dominate the entire EU in finance,and are now focusing on dominating the globe with new energy technology.

and what are we doing here in america?
pushing through more and more neoliberal policies that immiserate the working poor,both here and abroad.desperately continuing our destruction of entire ecosystems to exploit our natural resources for:oil and gas.military conflicts,which only make this country less safe,all to exploit other nations and extract THEIR oil and gas,and the cost in human lives is absolutely indefensible.

all of it.
every single bit of it for short term gains for an extremely small minority.

and here we are,with trump opening the flood gates to further exploit and destroy our natural resources with no thought or plan for the future.no investment in our communities,nor our society as a whole.

and for those who wish to make an argument that hillary would be better.i will only concede that on a domestic level this may have been true,but hillary is a neoliberal corporatist,and she would have pushed for even MORE military intervention in the middle east.MORE sanctions against countries unwilling to play ball,in order to politically squeeze them out,and even MORE of this countries policy of "regime change" to exploit and extract from those countries their precious resources.

i strongly suspect Iran would have been next on her agenda.

so when are some of these people going to step up,and realize that both trump AND clinton are (or would have been) disasterous for us as a community,a nation and as a species?

because they both only offer short term solutions to long term problems.and those short term solutions only benefit a minority of the population.

we could turn this ship around TODAY,right now,if we so choose.
we need more politicians like elizabeth warren and tulsi gabbard.we need more integrity in our media and journalists willing to do their job and criticize power,not bow to it just for access.we need the people to become engaged and confront their representatives,and make them uncomfortable,not treat them as celebrities.

and we need to reject the system where rich people choose who we get to vote for,and begin to dismantle this two party duopoly.

because trump vs hillary?
this election cycle has just revealed that both these candidates are not the disease,but rather the symptom of a very broken,and dysfunctional political system.

we need to begin to invest in the future.
and reject the status quo as no longer being viable for the continued existence of the human species.

and with the newly energized american public,who are growing in numbers daily,and is a direct response to the unmitigated disaster that is trump.there may be hope for us yet.

because if we stay on this trajectory,we are fucking doomed.

The Adpocalypse: What it Means

MilkmanDan says...

I agree that NoScript tends to make it a hassle to get basic functionality out of the vast majority of the web. You have to play around with allowing scripts from some domains and not others, on pretty much every page you visit.

...Which is pretty scary, if you think about it. Are all of those cross-site scripts beneficial or even necessary from a user standpoint? Hell no. Users stand to gain nothing from all that crap running. From our perspective, they just increase load times and data usage, often compounded with auto-reloading. We should have control over that stuff in all circumstances, but it becomes absolutely critical in mobile internet where we generally don't have as much processing power AND the vast majority of people have data usage caps.

Basically what I'm saying is, the admitted fact that NoScript tends to make the web unusable is a symptom of a deeper problem with how the web is constructed these days.

If you like the idea of NoScript, but generally find it too high-maintenance, you might want to try Privacy Badger. It requires somewhat less user input with regards to which trackers/scripts get blocked, instead going with defaults based on "trustworthiness" as measured by algorithms from the EFF. Those defaults can be tweaked if you desire, also.

I usually run a Firefox (or Pale Moon) client that is extremely locked down. UBlock Origin, NoScript, Privacy Badger, Self-Destructing Cookies, sometimes Ghostery, etc. I use that as my default browser, and take the time to fine-tune the controls in NoScript, element hiding in uBlock, etc. for sites that I visit regularly.

But frequently, I'll find a link to some article that I want to read and notice that the page content won't load at all since it requires some nonsensical script. In those cases, if I don't want to take the time to fiddle with NoScript etc. permissions, I copy the URL and fire up Chrome in incognito mode, with only uBlock Origin.

Probably not worth the hassle for most people, but I guess I'm kicking and screaming my way into this brave new world.

ChaosEngine said:

Just for the record, I do run ad block plus on chrome.

@00Scud00, I used to run noscript, but it pretty much made the web unusable, or I spent so much time enabling js on certain sites it wasn't worth it.

Fixperts - A Button Fastener for 82 year old Tom

newtboy says...

Changing diet seems to help relieve symptoms for some people, temporarily, not long term, but spontaneous remission also happens with no diet change, so much more, double blind study is needed before making definitive statements like the one you first made.
Prime allergy suspects, not necessarily causes, and only for some food hypersensitives, not everyone.

I agree, if the studies of fish oil were only for people on certain ra drugs they certainly should make that abundantly clear.

transmorpher said:

What you've quoted is that's the same thing I said in my OP -JH acknowledges that changing diets helps. They specifically say meat and milk are the prime allergy suspects.

There isn't any disagreement here :-)




But..........I do have a bone to pick with Hopkins. The fish oil study they reference on the Hopkins site, is a bit sus when you dig deeper.
Everyone in the study was also given disease-modifying anti-rheumatic drugs along with the fish oil..... so Hopkins isn't really giving us the full story here, which is: Fish oil helps remission in people on RA drugs.

Great, now RA sufferers have to buy toxic liver destroying drugs, and also buckets of fish oil supplements too(the doses were 10x the daily recommended amount of fish oil).... I guess they're line of reasoning is that you make more money if you can sell them two pills for the same disease.

They even try to hide the drugs part by calling it "DMARDs" after the references (which people don't usually read). Technically it's not lying I suppose, but it's very unethical. If I didn't go all the way through and find the research it'd have never figured that out. Turns out John Hopkins is largely industry funded, which doesn't surprise me now that they're approach is to push more pills, instead of less.

Sincerely, I have to thank you for bringing that to my attention. I like to keep a list of this misleading stuff.

You weren't wrong when you said there are some scummy misleading people in the medical field.

Fixperts - A Button Fastener for 82 year old Tom

newtboy says...

According to the JH website, it's not only wrong, the study could not show what you claim by it's design.
Excuse me...let me use their exact words....

Food Hypersensitivities and Their Link to RA

In some patients, specific foods have been shown to exacerbate the symptoms of RA.(ref 5) Avoiding these foods or food groups has been shown to have limited, short term benefits but no benefits long term. Even though different forms of dietary modification have reportedly improved symptoms in some patients, people with RA may have spontaneous temporary remissions. Therefore, it is important to perform double-blind, placebo controlled trials to differentiate diet effect from spontaneous remission. You may identify a food that is a particular trigger for you, and this phenomenon is real. However, the science is not able to reliably identify specific triggers for individuals.

Diet elimination therapy is a method of determining food hypersensitivities with patients. Elimination diets avoid a specific food or group of foods such as milk, meat or processed foods that are known to be prime allergy suspects. These foods are eliminated from the diet for a specific period of time. Foods are then gradually reintroduced one at a time, to determine whether any of them causes a reaction.

Panush and colleagues, demonstrated temporary improvement in the signs and symptoms of RA with diet elimination and modification in a controlled study where the symptoms associated with food sensitivities were studied.(ref 5) During this study when the patient was fasting or on a severely restricted diet, the patients symptoms improved significantly. However, when the patient had milk reintroduced into the diet, episodes of pain, swollen and tender joints and stiffness were experienced. Similarly, Kjeldsen-Kragh and colleagues(ref 6) noted that fasting may be effective in reducing the symptoms of rheumatoid arthritis, however most patients relapsed as new foods were reintroduced into the diet. Pain and discomfort frequently returned once a patient reverted to a normal diet. These studies are few in number and should be interpreted and extrapolated to real life only with careful thought and caution.

transmorpher said:

The information I provided in my OP wasn't wrong. It's inline with the John Hopkins quote you provided, but you then decided to tailor the quote to your agenda by adding your own "hypersensitive people" bit onto the end.

If you had perhaps made a measured rebuttal, I'd happily discuss this with you. But you take things out of context, you exaggerate, you lie - whatever you deem necessary to make you "right" or "win".

You always do this, regardless of the topic. Why do you even bother discussing anything?

Fixperts - A Button Fastener for 82 year old Tom

newtboy says...

So, no vegan has arthritis, but the entire medical community just missed that fact? Not true.
One more total misrepresentation of the science by your guru....the ACTUAL science, from Hopkins, says....
"In some patients, specific foods have been shown to exacerbate the symptoms of RA.(ref 5) Avoiding these foods or food groups has been shown to have limited, short term benefits but no benefits long term. Even though different forms of dietary modification have reportedly improved symptoms in some patients, people with RA may have spontaneous temporary remissions. Therefore, it is important to perform double-blind, placebo controlled trials to differentiate diet effect from spontaneous remission. You may identify a food that is a particular trigger for you, and this phenomenon is real. However, the science is not able to reliably identify specific triggers for individuals."
So only in hyper sensitive patients that have allergies to dairy, meats, or processed foods has this appeared to be somewhat effective temporarily, not long term, not for everyone....and it seems only anecdotally at this point (they imply that there have not been double blind, placebo controlled studies yet).
Fish oils are FAR more effective, but, you know, that's an animal product, so McDougal (as he is want to do at every turn) dismisses it in favor of false claims about miraculous veganism and misrepresentation of the science.

I downvoted your comment for using misrepresentational propaganda and unverified anecdote masquerading as scientific data from a known liar with undeniable bias to support your unsupportable position(s), that veganism cures everything including cancer.

transmorpher said:

Ah this makes me sad that none of his doctors told him that rheumatoid arthritis is a flare up caused by dairy and certain meats

If anyone else is suffering from it, try changing your diet for a week or two. It's free, and there are no side effects. You can always go back if it doesn't help. But for these people it changed their lives:

https://www.drmcdougall.com/health/education/health-science/featured-articles/articles/diet-only-hope-for-arthritis/

Follow the recipes on the site, it's all stuff you already eat, just with a few ingredients changed. (don't worry it's not salad!)
https://www.drmcdougall.com/health/education/recipes/mcdougall-recipes/

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Facts VS Fake News

dannym3141 says...

If the media had more of this kind of stuff in the past few decades instead of sensationalist or partisan bullshit, we wouldn't be in a position to need it.

It's easy to call media fake - a lot of it has been for a very long time. We who watch and discuss politics videos here would be celebrating Sanders if he was on TV right now talking about how biased a lot of media was.

The left and the right have a lot that makes them different but essentially they want the same things - security, happiness, prosperity. They disagree on how to get those things and that's all ok, but we agree to a level playing field so that things like Hitler, Trump, etc. can't happen. The playing field has to be level for everyone or people get angry. When people get angry under a theocracy or dictatorship they revolt. When people get angry under democracy, they vote for populists.

We need to hope that the playing field can be levelled again. People aren't happy with a rigged system - crony capitalism, profits before people, corporate welfare, tax dodging...

You know how people were saying it should have been Bernie vs. Trump? Well, that's because ordinary people on the left and right saw unfairness everywhere.

The left weren't going to seriously mobilise for a wishy washy weathervane like Clinton. But the angry right had their ideal candidate and they DID seriously mobilise. The kind of mobilisation that has teeth? You only get that when people believe they've got the right guy.

In my opinion, an Ocean's Eleven style heist occurred some time ago involving, basically, businessmen. People who wanted money. The best way to make money was to be involved in politics. So some businessmen joined political parties, or donated money to them and demanded a few favours. A few politicians think, hey i could use some extra money, and make a few promises. This goes on for long, eventually business and politics become the same thing and policies are designed around business and profit.

People aren't happy, the system is rigged. Trump is the immediate problem, but concessions must be made by those with money and power or another Trump will happen. He is a symptom not the cause. Desperate people place desperate votes.



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