This Is MS Multiple Sclerosis Community: Knowledge & Support

I am curious as to why some people think all complementary medicine is quackery.

I the last few weeks, on the forum, I have read people dismissing everything from Vitamin C to yoga.

I think, most of us would agree, there are some very dangerous people praying on the vulnerability that come with conditions like MS and it is important people are aware of this. Everyone is entitled to their opinion but why this level of bitterness and aggression about it?

As I have always been a skeptic I decided to look in to MS and all treatments in as much depth as I possibly could, so I took a post -grad nutritional diploma and an MSc in Biochemistry (and start my Doctorate in the fall). Not everyone has the time or inclination to do this but the majority of people I come across are educated, or at least know the basics, when it comes to the plus and negative points of CAM.

I see CAM not as an alternative to western treatment but as an adjunct to it. Hence taking both supplements and Rebif. Though switching to copaxone soon. I prefer to find the best of CAM and standard medicine, research both and discount neither.

I would also agree that, just as seen with drug trials, the placebo effect can be incredibly strong. If it helps I don't care how it helps. CAM can offer people a greater amount of control over their condition and this in itself is very positive. It can also be a rip off it you don't research carefully, I wouldn't argue with this but there are non -profit nutritionists and CAM centres around to help.

There is no longer such a big divide between CAM and Western allopathic medicine. For example, my consultant an MS specialist recommends Evening Primrose, as having some veracity, the N.I.C.E committee (overall body for deciding on government sponsorship of drug treatment in the UK) recommends Linoleic acid for people with MS. The nutritional aspects of medical courses are increasing in weight, new doctors are less close minded to nutrition and hospitals in the UK now offer these services.

No treatment is a magic bullet, and I will always be deeply suspicious of anything that claims to be so - allopathic or CAM. But I will also keep an open mind and not dismiss everything that doesn't come out of the mouth of a neurologist as rubbish.

Why is there so much anger and derision from some people?


Felly

For me, the issue with alternative medicine is usually the manner in which it is promoted. I apply the same standards of evidence and proof to everything. The drug companies are extensively reviewed and I support that quite strongly. But the alt-med people are not officially reviewed and therefore they can and frequently do make outlandish claims without any consequences.

I don't think alt-med should be government regulated unless it can be shown that they're pushing a harmful substance. But a healthy skepticism is certainly warranted when it comes to their claims. This goes double for MS. It is a serious and sometimes devastating disease of unknown origin and having no cure. This makes MSers sitting ducks for quackery of all kinds, be it herbs, miracle cures or the application of karma.

Caveat emptor!

Willy,



I also support clinical trials and proper research along with scientific approval of any drug. But this certainly doesn't guarantee that quackery won't be practiced. One only needs to look at what Warner-Lambert did with the promotion of Neurontin. They hired a PhD scientist who soon started to tell docs all kinds of false information and claims about Neurontin. He finally blew the whistle and not only did Pfizer, the parent company, have to pay a $ 430 million fine, they also pleaded guilty to criminal charges involving the false promotion of a drug. Quackery in every sense of the word, practiced by a huge pharmaceutical company who knew exactly what they were doing. That, to me, is far worse than some Joe Blow running around the country claiming his tonic water will cure cancer, AIDS or whatever.

Harry

The penalty was too weak. No one went to jail, and the only real way to deter white collar criminals is to send them to the slammer. It is more effective with them than it is with blue-collar criminals. To your point: I agree that the FDA approval process isn't any guarantee, but it helps quite a bit. The alt-med quacks can, and so, say whatever they want.


I'm not so sure about that. The purveyor of the "AIDS isn't caused by HIV" quackery managed to convince a lot of African governments, and as a result there are millions of people who will die. Alt-med in its various forms is a huge industry. In any case, two wrongs don't make a right.

Willy,

>Alt-med in its various forms is a huge industry. In any case, two wrongs don't make a right.<

I will certainly agree with you on that statement. At the same time, the level of trust that is given to a pharmaceutical company by the FDA and then what many of these companies do with that trust is beyond criminal.
I agree with you in that the corporate heads should be jailed for what they did a Pfizer but money still talks louder and that's why it won't happen. The article mentions one company that places $500 million in their legal war chest for just this kind of situation.....they know in advance what they are doing is wrong and that they can possibly be caught. That to me is far beyond what "Joe Blow" is doing in trying to preach about his "snake oil".

Harry

Amen, Harry.

Deb

The drug companies dearly wish they could market their stuff the way the alt-med people do, and they are working overtime to try to weaken the FDA and place roadblocks in front of people's right to sue for damages. I saw something in The Washington Post the other day from a biotech shill suggesting elimination of Phase III of the three-step trial process.

If it hasn't happened already, I think we can expect at least some of the alt-med quacks to be acquired by the drug companies, which will then do everything they can to erase the distinctions between regulated and non-regulated substances. You can see it starting to happen already with the TV advertising.

Better be careful what you wish for, Harry, because you just might get it.

Willy,



Somewhere along the line I believe that you missed my point.

I have never said that I approve or want alt-med people to run around making false claims for their medications. Living with my wife who was involved in the medical field for over 30 years has taught me better

My concern involves what the pharmaceutical companies have done for years and are now starting to get caught....and that is the false promotion and marketing of drugs strictly to get more profit.

I just read another article last night and haven't quite digested it all as yet. It involved the lack of publication by drug companies for anti-depressant drugs prescribed for children. Appears that in many trials, these companies chose not to publish information that children taking these drugs were more susceptible to severe depression and/or suicide. What got published for public view were the few positive results but certainly not the many negative results. A friend of mine told me that what is being discovered now about the drug companies is only the tip of the iceberg!!! I'm now starting to believe her.

Harry

Harry,

That's coincidental. In doing further research regarding clinical trials and the contracts between corporate sponsors and physicians, there have been lawsuits regarding the fact that corporate sponsors put clauses in their clinical trial contracts regarding "publication" of the results of the trials - and unfortunately, the doctors who entered into those contracts didn't "notice" that clause. It was/is very common practice apparently. (I even tried to no avail to get my hands on an example of a clinical trial contract between a corporation sponsor and the medical industry. I'm a paralegal, and I'd LOVE to tear it apart! HAH!)

Apparently, it may take legislative action before those kind of practices can be completely controlled.

The information I ran across basically said that these clauses dictated that publication of the results of the trial would only happen if the trial produced "positive" results, whereas any negative results would be supressed and not published. (And basically amounted to a "gag agreement" on the doctor!) I found where at least academic institutions were attempting to make their research and physician staff aware of these types of clauses, and to be very careful about entering into these type of agreements. This is another area that might get blown wide open soon (or maybe already has and I'm behind the eight ball). I'm not trying to sound like an overzealous conspiracy theory fanatic - this is simply the truth, and what I see every day.

Anyway, with regard to anti-depressants, I totally support what you state here. During my research with my own personal little cause (desipramine), I ran across several instances where there have been attempts by groups of physicians, etc., who have been trying for years to force pharmas to correct their anti-depressant dosage recommendations and contraindications for use in children (i.e. to not use for children)! I even ran across a copy of letter (sent to I think a regulatory commission) signed by several highly known and respected physicians regarding this very subject.

I'll tell you.........a good lawyer CAN make a very good case of those practices by pharma companies to be false promotion and marketing of drugs simply for profit. How uncanny, Harry!

Oh, boy.....I suspect this is going to be a very interesting area to watch.

As for alternative medications, etc., I support more oversight of false claims there, also. I hope that doesn't sound completely bureaucratic, because not all alternative treatments can or should be considered total quackery! I simply advocate safety and truth in advertising.

Deb