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 | NMSS comes out against Low Dose Naltrexone for MS |
 Oh the plot thickens. The (US) National Multiple Sclerosis Society has just published an article advising against the use of Low Dose Naltrexone (LDN) for MS:
"May 2004—We have received a number of inquiries about the use of low dose naltrexone as a treatment for multiple sclerosis. There are no published clinical data to support the use of naltrexone in MS.
Naltrexone is an opioid antagonist that has been approved by the U.S. Food and Drug Administration (FDA) since the early 1990s for the treatment of addictions to opioids and alcohol. At significantly lower doses, it has been marketed on the Internet as a treatment for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson's disease, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as MS and other autoimmune diseases. There are, however, no published reports of placebo-controlled clinical trials demonstrating the safety and efficacy of naltrexone in any of these diseases. The marketing efforts rely entirely on anecdotal reports.
Naltrexone is said to work in MS and other diseases by adjusting the level of endorphins in the body to enhance immune function. Enhancement of the immune system, however, is not recommended for anyone with MS. Because MS is thought to be an autoimmune disease, in which the immune system mistakenly attacks the myelin in the central nervous system, the goal of currently approved treatments is to inhibit the overactive immune response rather than boost it. In fact, the one study of low dose naltrexone in experimental allergic encephalomyelitis (EAE)-the animal model of MS-demonstrated a disease worsening (Panerai et al. 1994. J Neuroimmunol 51(2):169-176).
People with MS are advised to avoid any medication, dietary supplement, or other treatment that is touted as strengthening the immune response."
Now while the points they make are certainly valid-- LDN does not have any clinical trials proving its efficacy in MS-- they seem to skew the argument to other extreme that LDN should not even be considered as a valid therapy for MS. They speak as if the idea that MS is an autoimmune disease, and thus would respond negatively to something that "boosts" the immune system (LDN is said to "regulate" the immune system, not boost it-- and neither of those theories has been scientifically proven), is an established fact-- something This is MS members know it is most definitely not.
Possibly the most disappointing issue is this: Of all the alternative, non-CRAB medications we have seen for MS, LDN is the one that most consistently seems to make people feel better, do better, and possibly even reduces their progression. If the NMSS was really interested only in the welfare of MS patients (as they are trying to position this article), SOMEWHERE in this article of theirs there should have been a call for an LDN trial to prove conclusively one way or another whether this therapy works. But no such mention exists. There is not even a mention of the LDN trial for Crohn's Diseases (an auto-immune disease)currently going on in Pennsylvania.
If there's enough interest in this drug that they feel compelled to write an article about it, shouldn't they consider the possibility that it actually works? Instead, they open the door, discredit the treatment with possibly irrelevant/moot/controversial points, then close the door as if there is no further discussion worth pursuing. How truly sad-- we expected much better from one of the most powerful MS societies in the world that, with its nearly $200M USD annual budget, could fund an LDN study without batting an eye. I urge all of our readers to write to the NMSS and ask them, "Why only take a negative approach to a treatment that hundreds of MS'ers swear by? It is fine to warn people to not take a treatment that does not have clinical trials behind it, but does the possibility that it actually works not exist according to the NMSS?"
In the interest of full disclosure (and not to set off conspiracy theories), please note that the NMSS receieves significant funding from the large drug companies that have a strong interest in discouraging the use of a $30 USD/month therapy such as Naltrexone. For proof of this connection, look no further than the NMSS' message boards, which are overtly sponsored by Betaseron. In fact, from the NMSS' own web site: "The Society receives grants from pharmaceutical companies and other corporations for educational projects, under strict guidelines to ensure impartial content, and accepts sponsorships in exchange for exhibition space at national meetings."
This gives us an opportunity to emphasize the reason our site exists. This is MS does not receive $1 from any corporation-- you can trust us to be on YOUR side and no one else's.
Click "read more" to read their article...
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Full Article Text
Low Dose Naltrexone Update
May 2004—We have received a number of inquiries about the use of low dose naltrexone as a treatment for multiple sclerosis. There are no published clinical data to support the use of naltrexone in MS.
Naltrexone is an opioid antagonist that has been approved by the U.S. Food and Drug Administration (FDA) since the early 1990s for the treatment of addictions to opioids and alcohol. At significantly lower doses, it has been marketed on the Internet as a treatment for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson's disease, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as MS and other autoimmune diseases. There are, however, no published reports of placebo-controlled clinical trials demonstrating the safety and efficacy of naltrexone in any of these diseases. The marketing efforts rely entirely on anecdotal reports.
Naltrexone is said to work in MS and other diseases by adjusting the level of endorphins in the body to enhance immune function. Enhancement of the immune system, however, is not recommended for anyone with MS. Because MS is thought to be an autoimmune disease, in which the immune system mistakenly attacks the myelin in the central nervous system, the goal of currently approved treatments is to inhibit the overactive immune response rather than boost it. In fact, the one study of low dose naltrexone in experimental allergic encephalomyelitis (EAE)-the animal model of MS-demonstrated a disease worsening (Panerai et al. 1994. J Neuroimmunol 51(2):169-176).
People with MS are advised to avoid any medication, dietary supplement, or other treatment that is touted as strengthening the immune response.
Clinical Programs Department
in collaboration with
Allen Bowling, MD, PhD
Rocky Mountain MS Center
Original article can be found here
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Re: NMSS comes out against Low Dose Naltrexone for MS (Score: 1)
by MsWillow on Sunday, May 16 @ 14:09:08 EDT
(User Info | Send a Message) | If I recall correctly, this tactic is called, in a debate, a "straw man." They've asserted something about LDN that nobody ever said was true, disproved it, and concluded that it's worthless as a treatment. Bunk.
That said, I'm still unsure about LDN. If all it does is boost the endorphine levels, well then, maybe my experiences with endorphines is valid. Not long after I got MS, I got into several things that maybe I shouldn't have - piercings, for one, and hot peppers. Both give the body a fast flood of endorphines, and the peppers, at least, are generally considered socially acceptable. For a time, I drank tablespoonsfull of the hottest habanero sauces I could find.
Sure, it was fun, but it had zero impact on my MS. Eventually, I stopped, let all the holes heal up and threw out my habanero sauces. Years later, I was DX'd, and years after that, I heard about LDN.
So anyways, if LDN is all about endorphines, you can do it a lot easier with habaneros. If there are other benefits to LDN, please do tell. I'm all ears. |
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Re: NMSS comes out against Low Dose Naltrexone for MS (Score: 1)
by Shayk on Wednesday, May 19 @ 22:33:58 EDT
(User Info | Send a Message) | As someone interested in "informed consent", which to me includes being as knowledgeable as possible about the risks/benefits of all decisions regarding treatment, I noticed that the NMSS also referenced "safety" in its statement about LDN for people with MS.
I take Avonex. Is it safe? There's a list of possible side effects, among others: "Carcinogenesis: No carcinogenicity data for AVONEX are available in animals or humans." (1/31/2003 Biogen document). And, reading the package insert, Table 3, Adverse Events and Selected Laboratory Abnormalities in the Placebo-Controlled Studies, is interesting if you focus on the word "selected". Is there anything that was left off of the list? Who does the "selecting"? (Another skeptic here.)
It's my understanding drug companies are under no obligation to publicly release all of their data. And, has the long term safety for any of the CRAB drugs been firmly established?
For funding an LDN study, perhaps it's time to approach health care foundations outside the "world of MS". For example, the biggest risk for MS is being born a woman, perhaps someone knows a woman's health care foundation or organization that can be approached.
Just an idea. |
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