This Is MS Multiple Sclerosis Knowledge & Support Community

There are drugs which work but the FDA will not let us have them. Got to go somewhere else if you want the good drugs. The system we have is for making money not for curing people of disease.

http://articles.mercola.com/sites/artic ... =447502490

want2bike wrote:There are drugs which work but the FDA will not let us have them. Got to go somewhere else if you want the good drugs. The system we have is for making money not for curing people of disease.

http://articles.mercola.com/sites/artic ... =447502490

Hey Wanna....are you promoting the use of a drug with this article?! One of those nasty, toxic substances that you previously have stated are bad for us. But you said this was a "good" drug and not a "bad drug". Hmmm!

Normally, when someone writes a scathing article about someone, they try and get a response to the accusation from the person or company that they are attacking. But I couldn't seem to find that in Mercola's article about the FDA. Wonder why?

If you do not want to do the diet and other natural things then drugs are appropriate if they work. Apparently the chemo is not working and these people are going to die if they can't get the treatment which seems to be effective in treating their form of cancer. FDA does not believe in freedom choice in treatment. If it is not radiation, surgery or chemo you can't use it. The only thing I can figure out is they do not want something on the market which may cure cancer. Freedom of choice does not exist in the medical community. Anyone should be able to see clearly how the FDA operates and therefor put no weight in anything they say. Everything is suspect with these jokers. Letting these people die is criminal.

http://articles.mercola.com/sites/artic ... movie.aspx

want2bike wrote:If you do not want to do the diet and other natural things then drugs are appropriate if they work.

Oh, I see now....it's ok to use drugs "if they work". That's certainly a change from your previous stance of saying drugs are bad for you. So who determines if a particular drug is bad or good for you? That's easy, ask Want2bike and you'll get the proper, scientific answer!!

Apparently the chemo is not working and these people are going to die if they can't get the treatment which seems to be effective in treating their form of cancer. FDA does not believe in freedom choice in treatment. If it is not radiation, surgery or chemo you can't use it.

While it is sad the people involved here can't use the drug that once worked for them, we don't know why the FDA is not allowing it. That's why I said it would have been nice for Mercola to get clarification from the FDA as to why.

The only thing I can figure out is they do not want something on the market which may cure cancer.

Wow, that's really making a statement that you have no possibility of proving. While it's your opinion it certainly isn't much, is it?

Letting these people die is criminal.

Again, we have no idea of all the facts behind this situation. Until we do, it's kind of irresponsible to make blanket accusations, don't you think?

I think it is best to let everyone make their own decision on the treatment they want for any disease. Freedom of choice is a good thing. Facts are the FDA will not let the sick people choose their treatment. Do not know what you call it but it is wrong.

Hi NHE,

Out of curiosity, I'd like to know if the owner of TiMS could get a court order to find out the real identity of Centenarian100 and for what company he/she works? Could an order of protection be given to stop more of their employees from fraudulently registering at TiMS? There seem to be many legal, ethical, and moral issues involved with this person's behavior:

* This person intentionally violated TiMS' terms of service, terms that are meant to protect TiMS and its users.
* This person often used bully tactics, including intimidating and making ad hominem attacks on members.
* This person caused stressful situations for patients, and stress has been shown to cause new demyelinating brain lesions.

want2bike wrote:I think it is best to let everyone make their own decision on the treatment they want for any disease. Freedom of choice is a good thing. Facts are the FDA will not let the sick people choose their treatment. Do not know what you call it but it is wrong.

That's a strange statement. I'm sure that the vast majority of MS patients on this forum decide what kind of treatment they want and have done so for years.

HappyPoet wrote:Hi NHE, Out of curiosity, I'd like to know if the owner of TiMS could get a court order to find out the real identity of Centenarian100 and for what company he/she works? Could an order of protection be given to stop more of their employees from fraudulently registering at TiMS? There seem to be many legal, ethical, and moral issues involved with this person's behavior

Seriously? You know this is the internet right? I know I have not been on this forum long but I really don't see what the big deal is with Cent perhaps you can PM me... so far they seem as aggressive as anyone else. But the nice thing is they back up statements with some factual documents, which lend some credence to what they say.

Honestly it appears from the bulk of discussion on this forum is directed towards debates, tempers will get raised when a person shoots holes in a theory you hold dear. Take it with a grain of salt... or better yet counter there argument or adopt some of what they say. Maybe this person is super nice but there internet persona is ignorant or they lack a courteous bone in there body.

Look at the resident conspiracy theorist Want2Bike, their ideas are ridiculous, civilian airliners being disguised to poison us with ChemTrails, Illuminati ruling the internet through mind control, FDA and doctors in a conspiracy to keep the world as sick as possible. This individual can't back anything up with data of any value, so just ignore or poke fun. You could say their skin is as thick as the barrier around their brain keeping out rational thought. And you need a thick skin and a good common sense to navigate the internet world... the unfortunate thing is the newly diagnosed will lack this, I certainly did...

want2bike wrote:There are drugs which work but the FDA will not let us have them. Got to go somewhere else if you want the good drugs. The system we have is for making money not for curing people of disease.

http://articles.mercola.com/sites/artic ... =447502490

a quick search reveals that "antineoplaston" is not a single "drug" per se

"Antineoplastons are made up mostly of peptides and amino acids originally taken from human blood and urine."

source: http://www.cancer.org/treatment/treatme ... on-therapy

From the same website: "No randomized controlled trials showing the effectiveness of antineoplastons have been published in the peer-reviewed scientific literature.”

I can't assess the accuracy of this statement, but the FDA generally only approves drugs with two positive phase III trials. If they loosened their criteria for approving drugs, you would just trash them for approving ineffective drugs or drugs with unproven safety that later are found to cause serious side effects.

The website you linked is clearly biased, and as kronk says, doesn't seem to give an counterarguments.

It's ridiculous for you to say that you would refuse FDA approved treatments with very high quality evidence in their favor and criticize the FDA for not approving a treatment with only anecdotal evidence.

What exactly does the FDA have to gain by not approving antineoplastons?

-C

want2bike wrote:I think it is best to let everyone make their own decision on the treatment they want for any disease. Freedom of choice is a good thing. Facts are the FDA will not let the sick people choose their treatment. Do not know what you call it but it is wrong.

That is the whole point of the organization. It is a food and drug regulatory organization. Its entire purpose is to restrict and regulate these industries. Historically, opiates were used in children's cough medication prior to increased regulatory requirements. Do you really think that any company should be able to make whatever unproven claims they want to about any food product, drug, or nutritional supplement? Should it be legal for companies to sell a product called "MS cure" with only binders, salt, and cellulose and market it aggressively?

Do you really trust pharmaceutical companies or nutritional supplement companies to be ethical?

To those who are interested, quackwatch has an interesting article on the topic of antineoplastons:

http://www.quackwatch.org/01QuackeryRel ... nski1.html

HappyPoet wrote:Hi NHE,

Out of curiosity, I'd like to know if the owner of TiMS could get a court order to find out the real identity of Centenarian100 and for what company he/she works? Could an order of protection be given to stop more of their employees from fraudulently registering at TiMS? There seem to be many legal, ethical, and moral issues involved with this person's behavior:

* This person intentionally violated TiMS' terms of service, terms that are meant to protect TiMS and its users.
* This person often used bully tactics, including intimidating and making ad hominem attacks on members.
* This person caused stressful situations for patients, and stress has been shown to cause new demyelinating brain lesions.

Perhaps against better judgement, I will respond to your posts...

1) I don't have any affiliation with any pharmaceutical company. If you read the content of my posts, it's obvious that I don't particularly support the pharmaceutical industry. I generally have a skeptical and scientific approach to MS. I am not impressed by anecdotal evidence for any treatment whatsoever. I have been following MS research for over a decade, and I have seen many things rise and fall in popularity and hype. I think that various platform agents in MS (avonex/betaseron/extavia/rebif/copaxone) have proven but modest benefits in relapsing MS (MRI outcomes, relapses) but no clear long term effect on disability. Potential long term benefits of more potent agents (natalizumab/alemtuzumab/rituximab/HCST) remains to be seen.

No pharmaceutical has demonstrated any clear benefit in progressive non-relapsing MS. I am not convinced by the male subgroup in the copaxone trial for progressive MS or the age < 50/gadolinium + lesion subgroup of the rituximab trial.

This position is essentially advocated by the American academy of neurology (#4):

http://www.choosingwisely.org/doctor-pa ... neurology/

Despite this, I find it frustrating when people on this forum criticize pharmaceutical treatments and endorse treatments with lesser evidence. If you are going to be skeptical of pharmaceuticals, you should be skeptical of all treatments of MS.

I am generally interested in nutrition and diet in multiple sclerosis, and it is somewhat disappointing that high quality trials on this subject are lacking.

In general, I am optimistic that greater scientific knowledge will lead to more targeted therapies leading to safer and more effective pharmaceuticals. In the short run, most of the improvements will probably be in relapsing MS, but eventually, I believe we will be able to stop and reverse progressive MS.

I think that financial incentives drive the pharmaceutical industry towards developing certain types of treatments and using certain types of unscrupulous marketing tactics. However, I am skeptical of the idea that any large scale conspiracy exists to suppress known effective treatments. I assure you that the family members of neurologists and the MS division of pharmaceutical companies are being treated with mostly FDA approved treatments for MS. I have met many of these people at national MS Society meetings.

2) You cannot get a court order to find out who I am. Posting opinions on an online forum is completely legal here in the United States. If an admin genuinely thinks that I am a drug rep here to market pharmaceuticals, they should ban my username.

3) It is true that I earlier used ad hominem attacks against cheer and wanttobike. I admit that this was not the most tactful or effective way to make my point. In my defense, cheer blatantly posting false information and trashing the FDA infuriated me, and wanttobike's sophism and blanket statements frustrated me. I still feel that cheer should retract her earlier blatantly false statement about novartis. I'm a brash American, so that is the best apology you're ever going to get. It is somewhat ironic to accuse me of ad hominem attacks when you are accusing me of being a pharm rep and threatening to track me down in real life.

4) If you feel that reading about the opinions of others is too stressful, I recommend not reading internet forums. I personally find open and free discussing to be incredibly valuable, and I have learned a lot from reading posts on this forum.

C, I haven't read your post, but the TiMS' members who contacted me who have bothered to read it still think your behavior is fraudulent.

Sorry to say that your user name is now as toxic as some of the meds a "pharm rep" (I laughed when I was told you used this phrase) tries to sell, but you can always try again with a new user name in a couple months.

Edit: To save others from emailing me, I skimmed C's post and have nothing to add for now, except re stress. I'm not worried about myself; otherwise, I wouldn't have posted. This forum is supposed to be a safe place on the Internet for all pwMS to visit - period.

Kronk, I just saw your post. C has lied about himself, treated members with much disrespect, and given insincere apologies. And now we learn that C doesn't care if he causes new brain lesions in pwMS; instead, he has the audacity to blame them for being here.

Honestly it appears from the bulk of discussion on this forum is directed towards debates, tempers will get raised when a person shoots holes in a theory you hold dear. Take it with a grain of salt... or better yet counter there argument or adopt some of what they say. Maybe this person is super nice but there internet persona is ignorant or they lack a courteous bone in there body.

Although I follow MS forums on the net far less frequently these days (wife who had MS passed away in 2007) the situation on ThisIsMS is not much different than most other forums when it comes to the type of posting that is done.

Fortunately, it happens less often here but nonetheless, some threads can become quite nasty and at times have been terminated by the moderators. But like you said, when someone challenges your theory, some people can become very upset and resort to aggressive responses.

Over the years, some members have taken some real shots at me and become quite personal in their attacks. But as per your advice, you need a thick skin and not let it "get" to you. Sometimes that is very difficult to do, especially if you are suffering from a disease like MS. I have seen a number of members leave the site after becoming too stressed to continue in a less than friendly debate.

But compared to other MS forums on the net, ThisIsMS has been fortunate to have a lot of talented people post over the years and there have been many excellent threads loaded with very good information.

These people are just trying to give some creditability to the FDA. They must have ties to the FDA or medical association. They are trying to convince people that it is possible to choose the good drugs. Let everyone have the right to choose the good drugs but not to choose what will really work. People are too stupid to make the right choice so the FDA will make it for us. Anyone with half a brain realizes that an agency which approves drugs which kill people and then have to pull them from the market is not creditable. Any agency which allows putting fluoride in the water, mercury in the mouth, GMO's in the food, and inject poisons in the body is a criminal. It is all about the money with these jokers and if you listen to them you will not get better.