Sebelius Tweet re Infectious Disease

[Ren]

13 February 2014 / posted on hhs.gov

 

[SilverbladeTE]

Well, in that case we deserve protection from Neisseria Wesselyitis?
AKA, Clap Doctors

 

[*GG*]

Everyone deserves the basic human dignity of being spared from Obamacare and this horrible economy, the 2014 election cannot come soon enough. IRS and Democrats, please stop harassing the people who pay your salaries. Quit trying to squash groups that are just trying to inform the ignorant masses of what you lousy law did, and all the laws you told. Bend the cost curve down, you can keep your Dr. etc.. You decided to ram this monstrosity down our throats, now deal with the ramifications!

This country needs more freedom of doing what is best for our health, your lousy networks with Drs are not going to provide us with the medical treatment we need for our CFIDS/ME/CFS, Fibromyalgia etc.. We need the right to choose what Dr we want, not be limited by some law that was concocted by non-experts, socialists?

We need more Freedom in the Health care field, not more gov't meddling, all that does is lead to less competition which only leads to increased cost!

GG

PS Hope you don't think these clowns give a rats ass about us? They just muddy the waters (IOM contract)! Under fund research, we get peanuts for the number and severity of our illness! Etc..Still have not read Osler's Web, probably be bad for my health?!

 

[Valentijn]

We need more Freedom in the Health care field, not more gov't meddling, all that does is lead to less competition which only leads to increased cost!

There has been too much freedom of insurance and medical providers in charging whatever they want. This is why medical costs in America are so obscene compared to everywhere with socialized medicine.

I also think it's rather selfish to use "ME/CFS won't get treated anyhow" as an excuse - there are many other people with many other disabling and deadly diseases who will be able to get help now. And personally, I like being able to get treated when I have more mainstream medical issues, or acute ME/CFS issues which require investigation.

 

[*GG*]

There has been too much freedom of insurance and medical providers in charging whatever they want. This is why medical costs in America are so obscene compared to everywhere with socialized medicine.

I also think it's rather selfish to use "ME/CFS won't get treated anyhow" as an excuse - there are many other people with many other disabling and deadly diseases who will be able to get help now. And personally, I like being able to get treated when I have more mainstream medical issues, or acute ME/CFS issues which require investigation.

Calling me selfish, you don't know me! You are entitled to your opinion, but not facts. Countries that have less gov't meddling, have lower health care costs, not fudged by the gov't. I believe Singapore has more market based system, and their costs are low, people have the Freedom to make their own medical decisions, what is so wrong with that?

Is it your country that just allowed kids to be euthanized if they want? Now that is progress! Seems like a "cop out" of trying to make medical gains, just let people kill themselves because we are to inept to find cures for illnesses!

GG

 

[SilverbladeTE]

"for profit healthcare" is insane, as is any "necessity/utility", for so many reasons
20 years from now at current trends NO ordinary American will be able to afford healthcare!
and that's not Obama's fault, it's the entire system's fault (he's part of it least some folks are trying though it's pointless in long term): corrupt, money and war driven to insane levels.

Free market capitalism only works for luxuries and to some extents for resources and services. Beyond that it becomes a horror.
Why cure when you can have someone hooked on your insulin forever....etc?

The health insurance and pharma corps are mass murdering monsters. UnumProvident rewarded employees who defrauded customers out of their health insurance, leading to their deaths, what happens? nothing! company "promises to change be better!" does it squat!
see how corporations and banks supporting terrorism, assassins, drug cartels, chemical dumping, water pollution etc all get carte blanche, they have "hunting licences" and can kill as many US/UK citizens as they can pay campaign contributions for!

UNUM set up with UK's department of work & pensions, thanks ot Tory government and are now putting folk like me to slow death.

Capitalism can NEVER work in large scale just like Socialism can never work in large scale, because greed and ego, monopoly, price fixing, corruption, control freakery and arrogance etc always drive things to horror.
Anyone who thinks the entire world banking system was brought down because some black Americans bought houses they couldn't afford...has completely missed the plot.

People in groups *suck ass!* Psychology, experience and history prove this time and again.

The constant attack/cover up/lies against ME, Gulf War Syndrome, Fibro etc are proof of all these issues.

Insurance companies started the attacks/denials against us to save money,
~government welfare systems got on board for same reason and they hate to do ANY work as change is anathema to any bureacracy (new stuff gets buried);
~government involved in cover up because they know or merely just fear possibility that adverse vaccine reactions, pesticides etc may cause these illnesses,
~and political parties and persons are corrupt, campaign contributions from pharma/chem companies or leaving office to go work for companies they set contracts up for.

as for euthanasia, US insane puritanism and desire for another "war" to fight: drugs, lead to US banning the use of heroin as a painkiller, and then FORCED that on many other countries, so, kids dying of cancer around the globe were/are forced to suffer
and the irony is the painkillers the US system allowed are far more expensive, far more lethal and addictive.
Because the US system is nuts, run by profit, politicians who haven't a clue or are on the take, and health insurance companies who make Scrooge look like Jesus

healthcare is NOT a luxury item you have it or suffer and die, allowing folk to make profit off that is insane and rings inevitable woes
note, making a LIVING and making a profit are two very different things.

And no, as we've shown many times, the pharma corps do not spend much of their money on research, mostly goes on enormous system of bribes, advertising and self aggrandizement for the CEOs

now we've dealt with that, can we get back on topic?

 

[Esther12]

You are entitled to your opinion, but not facts. Countries that have less gov't meddling, have lower health care costs, not fudged by the gov't. I believe Singapore has more market based system, and their costs are low, people have the Freedom to make their own medical decisions, what is so wrong with that?

Doesn't look right according to wikipedia?:

https://en.wikipedia.org/wiki/Healthcare_in_Singapore

 

[Mya Symons]

Regarding Obamacare: I live in a conservative area and I hear a lot of "Why should I pay for other peoples health care?" I don't understand this mentality. It took me years to get diagnosed with Hashimoto's and then years for a Fibromyalgia, CFS and Sjogren's diagnosis. Part of the reason was my substandard insurance. I was living in Seattle at the time and costs for insurance had skyrocketed. Meanwhile, I suffered. Why would anyone want that for another person, especially if you have experienced a disabling illness yourself? I now work for the government and have better healthcare. If they raise my health insurance a few dollars a month to pay for others who have no health care, I am more than willing to pay. Why is it so wrong to help eachother?


Regarding Kathleen Sebelius: I don't know what context the tweet was taken from; however, perhaps she should spend more time looking into treating and accurate testing for infectious diseases such as lyme and mycoplasma. If there is no test, it doesn't really matter what my insurance will pay for.

 

[*GG*]

Regarding Obamacare: I live in a conservative area and I hear a lot of "Why should I pay for other peoples health care?" I don't understand this mentality. It took me years to get diagnosed with Hashimoto's and then years for a Fibromyalgia, CFS and Sjogren's diagnosis. Part of the reason was my substandard insurance. I was living in Seattle at the time and costs for insurance had skyrocketed. Meanwhile, I suffered. Why would anyone want that for another person, especially if you have experienced a disabling illness yourself? I now work for the government and have better healthcare. If they raise my health insurance a few dollars a month to pay for others who have no health care, I am more than willing to pay. Why is it so wrong to help eachother?


Regarding Kathleen Sebelius: I don't know what context the tweet was taken from; however, perhaps she should spend more time looking into treating and accurate testing for infectious diseases such as lyme and mycoplasma. If there is no test, it doesn't really matter what my insurance will pay for.

It's not, it's just the gov't is very inefficient at spending these dollars, if you just donated that money to a good org, they could make it go up to 10 times further!

Has your insurance only gone up a few dollars? If so, how much longer do you think this will last? I guess time will tell, perhaps that is why the GOP is letting this law still take effect, to wake up people such as yourself. This law is already costing 3 times as much as sold to the American public, and it's not even fully implemented! I wish we lived in a perfect world, where everybody got the care they needed, but it's not going to happen. Look at all the complaints from our brethren, and my impression is that lots of them wish they could get many of the treatments some of us get, instead of being told it's all in their heads or to exercise (GET).

GG

 

[*GG*]

Is it your country that just allowed kids to be euthanized if they want? Now that is progress! Seems like a cop out of trying to make medical gains, just let people kill themselves because we are to inept to find cures for illnesses!

GG

My bad, it is already legal, lovely!

GG

 

[Valentijn]

Is it your country that just allowed kids to be euthanized if they want? Now that is progress! Seems like a "cop out" of trying to make medical gains, just let people kill themselves because we are to inept to find cures for illnesses!

There is no practical way to cure many terminal diseases - such as metastasized cancers and deadly genetic defects. This is despite countries around the world making intensive efforts. While a cure might come eventually, it seems impractical to force anyone to live in intense pain with the knowledge that their disease will kill them in a horrible manner long before a cure can be found.

I see no reason that children should be forced to endure such prolonged and pointless suffering anymore than adults should.

 

[SilverbladeTE]

GGingues
I can't speak of US charities as I lack data, but here, most charities now are prostituted to hell
they naively started getting in folk from the private sector to raise more money, and in nearly all cases, what has happened is they have become a business of raising cash, NOT helping people or whatever the cause initially was for, and the directors make loads of money now.

So, while it is correct that government wastes money (bureaucracies do suck) at least they have some bloody responsibilities and limits.
Private enterprise is the new way to get around freedom of information and civil rights etc.
"Oh sorry, but we have Non-Disclosure Agreements/commercial confidentiality so we can't tell you how much that vaccine cost/how much we pay mercenaries to do things the military would be executed for!" and so on.
ti's also about massive THEFT from the Public purse.
most of these contracts you find the politicians have extensive reward/link to the companies who win the contracts, hey, Haliburton is the perfect example!

And do no even attempt to say "Oh but the shareholders give limits"...pfffft!
what's happened is a massive web of nepotism woven, so the CEOs shuffle about between companies and also banks etc, THEY are the "shareholders", they have it all sewn up backwards, that's why we had that huge mess
they don't' care if they collapse it all, they have Golden Parachute contracts: too big to fail!

I find it darkly hysterically funny, that folk who screamed blue murder about the Soviets now support the same thing in a mirror, that's what we have become. And folk who often call themselves "Christian" attack universal healthcare and welfare.
actually "welfare" that itself is a joke way our mad systems are many working class jobs will be gone (have been going anyway) so our NeoLiberal Ubermensch want rid of the "useless mouths", us included.

"Give unto Caesar that which is Caesar's"

 

[Mya Symons]

It's not, it's just the gov't is very inefficient at spending these dollars, if you just donated that money to a good org, they could make it go up to 10 times further!

Has your insurance only gone up a few dollars? If so, how much longer do you think this will last? I guess time will tell, perhaps that is why the GOP is letting this law still take effect, to wake up people such as yourself. This law is already costing 3 times as much as sold to the American public, and it's not even fully implemented! I wish we lived in a perfect world, where everybody got the care they needed, but it's not going to happen. Look at all the complaints from our brethren, and my impression is that lots of them wish they could get many of the treatments some of us get, instead of being told it's all in their heads or to exercise (GET).

GG

Greg, I have a feeling that this is going to be a never ending argument, but I am going to go there anyway.
1) I live in the U.S. and I am still told everything is in my head and I should get GET!
2) With every illness that comes up, I still have to wait years to get treated with private insurance and then I have to pay thousands of dollars in deductibles. This is partly because I have FMS and CFS and no one believes me until I have very visible sometimes extreme symptoms. And, because I am lower middle class and, unfortunately, many doctors in the U.S. are more worried about the money they are going to make than the patient. Currently, my paycheck is getting garnished $600 a month for 10 months due to two long hospital stays by my son and I and the deductible left to pay. At least in countries where they have social medicine, they may have to wait a bit, but they do not go broke getting treatment.
3) I don't care if my insurance goes up more than a few dollars. What I care about is other people having to suffer.
4) Why can't everyone get the care they need? Why should we give up? We don't know what the future will hold for "Obama Care" yet because it has never been done here. It is unprecedented. It is very new. I plan to wait a few more years to actually see the evidence before I pass judgment.

 

[Ren]

Sebelius: "Everyone deserves the human dignity of being protected from infectious disease."

For what it's worth, I shared her tweet with the idea in mind, for example, of Dr. Chia's chronic enterovirus research - but it also works for Lyme (neuroborreliosis), etc.

In my opinion and from what I've experienced, and in very general terms, I believe many in socialized systems (outside the US) and/or simply, individuals in large US cities also, for example, often do not realize how good and how accessible healthcare in the US (a very large country) *can be*, even for blue-collar workers in rural communities.

I also believe that many in the US have no idea of the horrors, tyrrany, and death in socialized systems. I'm also sure the horrors, tyranny, and death in the US system aren't aired as they should be.

Also based on my experience, I think you have to be careful about what you mean by socialized "care" because (according to varied Europeans) such systems across Europe (and even within the same country at times) can be vastly different in quality across-the-board and depending upon a particular condition, for example. (Maybe our community needs to embrace some kind of medical tourism and set up a leper colony somewhere where antivirals, super probiotics, and whatever else helps some people can be accessed for cheap.)

I refuse to condone bad/hurtful behavior in any system or geographic area. If people are hurting, then something is wrong. But there seems no logic (to me) in slapping one broken system onto a different broken system and believing that people are gonna stop hurting.

In my opinion, Silverblade nailed it with "Capitalism can NEVER work in large scale just like Socialism can never work in large scale, because greed and ego, monopoly, price fixing, corruption, control freakery and arrogance etc always drive things to horror....People in groups *suck ass!*"

That said though - We're in the trenches, and we really need to stick together as best we can. Groups have power, and we need this power to accomplish our individual goals of access to real research and treatment.

Otherwise, I haven't read all of the comments in this thread, as I believe my head would explode. My intent with Sebelius' tweet was not to start a political discussion but to record the words of a government representative (in a position of power) - and use those words to hold the government accountable to its responsibilities.

 

[NK17]

I speak from the point of view of a former European citizen and resident and now a longtime US resident and naturalized citizen affected by ME who has been in contact with a MD/researcher from Italy and is currently treated by a ME specialist in the US:

1. The current US medical insurance system is far from perfect, but it's a necessary first step toward a more human, just and well functioning universal coverage.

2. If I was currently residing in my country of origin, as far as ME treatment options, I wouldn't be better off.

I would get A/V covered only if I had an acute infection, which is not the common scenario in PWME because of the aberrant and inadequate immune response to many pathogens and the delayed diagnosis.

To go back to Kathleen Sebelius's tweet, the title of this post, it seems to me that we are very far away from any protection, even less from any treatment in many countries around the world, the only real beacon is Norway thanks to Fluge and Mella and the fact that it's a very rich country with a social medicine system .

 

[Firestormm]

So is everyone here of the belief that ME is an 'infectious disease'? To Quote Sebelius above. Interesting.

 

[NK17]

So is everyone here of the belief that ME is an 'infectious disease'? To Quote Sebelius above. Interesting.

I think it's a bit more complicated than a "simple" infectious disease and right now , to quote Tom Waits, I'm riding on a crest of a slump ;(, but I think that many new lines of serious research indicate that pathogens and a faulty immune system are the culprit in a subset of PWME.

 

[SilverbladeTE]

So is everyone here of the belief that ME is an 'infectious disease'? To Quote Sebelius above. Interesting.

probably not, but...who knows
It mostly occurs after infection OR exposure to certain poisons which are extremely potent and affect the immune system/nervous system

we could have an underlying infection, the "basic fualtline", the San Andreas if you will
but most of what damage the San ANdreas does is NOT caused by the fault itself but by many related faults it has caused to exist or puts undue stress on

we have got to used to the utter IDIOCY, the blindness that "disease is simple: there's simple cause/cure for all illness"
BULLSHIT!
We have come ot understand the SIMPLE stuff, and now we're getting to appreciate the complex.

Another issue is from her post: no I do not bloody want folk mass immunized not even against M.E. especially since M.E> maybe (almost certainly has been for some folks) triggered by immunization
"The road ot hell is paved with good intentions", one day folk will ask why the hell were we so stupid as ot mass immunize against more and more diseseases of less and less catastrophic effect...because more immunization = increased risk if genetic change we never thought of, immune system over sensitization, infection form contamination, and complex issues we hadn't thought of (getting rid of one pathogen may elad to evolution of a worse one)
and so on.

Immunization against specific risk seems worth allowing but still to be held with great caution, ie, those who work with manured soils getting tetanus jabs, and such like.

 

[Firestormm]

I just read the tweet from Sebelius as meaning protection from infectious diseases, so that might include vaccination programmes for everyone and might imply affordability. I didn't actually think of it applying to ME or the system of healthcare necessarily. I guess though the triggers for many with ME are believed to be of infectious origin, so as you said, people might relate it to that I suppose.

 

[NK17]

I just read the tweet from Sebelius as meaning protection from infectious diseases, so that might include vaccination programmes for everyone and might imply affordability. I didn't actually think of it applying to ME or the system of healthcare necessarily. I guess though the triggers for many with ME are believed to be of infectious origin, so as you said, people might relate it to that I suppose.

I looked up and read Sebelius's tweet and your interpretation Firestormm seems right .
PWME are in a "category" apart because of the total lack of public awareness, ignorance of the general medical establishment and decennial denial from the government.
We as patients and sufferers need to bring the changes with the help of the few doctors and researchers that understand the gravity of our disease.