Re: This is MS article

[Guest guest]

Thank you so much for posting this. Has it been forwarded to the

NMSS people for comment/retraction? Any response from

them?

At 09:24 AM 5/19/2004, you wrote:

This is MS Responds to Fraudulent NMSS Article on LDN

Posted on Wednesday, May 19 @ 07:53:31 EDT by

Administrator

This is MS is proud to present our response to the National Multiple

Sclerosis Society's article last week on Low Dose Naltrexone. In their

piece, the NMSS entirely discredited LDN as a possible treatment for MS

and did not acknowledge any of the positive indications. We decided to

dig a little deeper into the article which struck us as strangely

negative, and what we found may shock you and may seriously alter your

perception of the NMSS. The article is long, but we think well worth the

read. All comments are welcome.

" On May 11, 2004, the United States National Multiple Sclerosis

Society (NMSS)

published

an article entitled “Low Dose Naltrexone Update.” This article

discourages the use of Low Dose Naltrexone (LDN) as a possible therapy

for MS, discrediting the idea in numerous ways. After thoroughly

investigating the article,

ThisIsMS.com has uncovered a

number of inconsistencies that expose the NMSS article as a fraudulent

piece that distorts facts, and as exposed below, even resorts to blatant

lies in an inexplicable attempt to discredit and inspire fear in what is,

at the very least, an extremely promising potential

treatment for Multiple Sclerosis worthy of clinical trials...

According to the study cited by NMSS to " prove " that LDN is

dangerous to MS'ers, LDN should actually be beneficial for MS, not

harmful! How's THAT for irony? "

Click " read more " for the full article... you'll like it, we

promise

Full Article Text

ThisIsMS.com Responds to NMSS Article on Low Dose Naltrexone

Cites errors and misrepresentations; Study referenced by NMSS to

purportedly show dangers of LDN actually indicates LDN has therapeutic

value

May 17th, 2004, 5:30am EST

On May 11, 2004, the United States National Multiple Sclerosis Society

(NMSS)

published

an article entitled “Low Dose Naltrexone Update.” This article

discourages the use of Low Dose Naltrexone (LDN) as a possible therapy

for MS, discrediting the idea in numerous ways. After thoroughly

investigating the article,

ThisIsMS.com has uncovered a

number of chilling facts that expose the NMSS article as a fraudulent

piece that distorts facts, and as exposed below, even resorts to blatant

misrepresentations of the truth in an inexplicable attempt to discredit

and inspire fear in what is, at the very least, an extremely promising

potential treatment for Multiple Sclerosis worthy of clinical trials.

Paramount amongst the attacks in the referenced article was a citation of

research purportedly studying the use of Low Dose Naltrexone in

Experimental Allergic Encephalomyelitis (EAE). Quoting from the NMSS

article:

“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).”

ThisIsMS.com has investigated this

citation and uncovered some very disturbing revelations. The result of

this investigation has shown that not only is the NMSS assertion

patently false, it is purposefully misleading and misrepresents

facts in a clear effort to discredit low dose naltrexone as a possible MS

therapy. The study cited, as it turns out, was not of LDN at all, but

in fact high dose naltrexone (HDN), which has a very different

effect on the body than the lower dose form currently taken by hundreds

of MS patients.

A conversation with one of the lead researchers of the cited article

revealed that the amounts of drug used in this study were 5 milligrams

per kilogram of body weight, administered not once but

twice per day! Compare this to the recommended LDN intake of 4.5

mg’s total per day (keeping in mind that the average adult human

weight is well over 50 kilograms) and the realization that this

study has absolutely nothing to do with LDN, and instead pertains to the

administration of HDN, is sudden, obvious, and given the agenda of the

NMSS article and the expertise of the author—absolutely

disturbing.

With the clear differentiation now established between the high doses of

Naltrexon used in the study, and the low doses used by MS patients,

reading the conclusion of the study proves incredibly fascinating.

”The administration of the opiate receptor antagonist naltrexone worsens

the development of [EAE], suggesting that the increase of the opioid

beta-endorphin might represent a mechanism to downregulate the immune

response.”

The first part of the sentence speaks to the administration of the high

dose naltrexone. Naltrexone, given in its full dose, blocks the brain’s

opioid receptors in a near-total fashion 24 hours a day. It is in this

fashion that the drug earned approval for use as a therapy for opium

addiction (as it prevents opium from being received in the brain, and

thus prevents the associated “high”). In other words, the study is saying

that the near-total and constant block of opioid receptors worsened EAE.

Now, this action of HDN is what the NMSS article states Low Dose

Naltrexone does—“…the one study of low dose naltrexone in

[EAE]…demonstrates disease worsening.“

But much to the NMSS’ chagrin, in reality LDN does not at all behave the

same way as HDN! Being a tiny part of the intended Naltrexone dose, LDN

blocks the opioid receptors just for a short period of time—not

the whole day as HDN does. During that time, the body, tricked into

believing it is not producing enough beta-endorphins (which also attach

to the opioid receptors) responds by increasing beta-endorphin

production. In a few short hours, the LDN is metabolized and the opioid

receptors are free to function normally for the rest of the day with an

increase of endorphins as compared to not having taken the LDN

(please reference I. Zagon’s prolific research to understand the

clinical proof for these claims).

With that in mind, the last part of the study’s conclusion proves what

turns out to be an incredible point, and reveals the true nature of the

NMSS article for what it is—a blatant lie. Looking at it again:

“…suggesting that the increase of the opioid beta-endorphin might

represent a mechanism to downregulate the immune response.”

In simple terms, blocking the opioid receptors (and thus the reception of

beta-endorphins), all the time by using HDN increased disease

progression. The implication is that beta-endorphins might have a

beneficial effect, because without them the disease gets worse. LDN

boosts the production of beta-endorphins, and this fact, according

to the very same study the NMSS would have one believe demonstrates that

LDN may be harmful for MS, “might represent a mechanism to

downregulate the immune response”!

Yes, you are reading correctly: According to this article LDN

should actually be beneficial for MS! How’s that for

irony?

This is just the most blatant example of the errors in this article.

Others include:

[NMSS Article says]: “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”

[This is

MS responds]: While Naltrexone (full 50mg dose) was indeed approved for the

treatment of alcoholism in 1995

(http://www.niaaa.nih.gov/press/1995/naltre.htm),

it was approved for the treatment of opium addiction much earlier, in

1984

(http://www.naltrexzone.com/FDAmeet.htm).

Neither of these dates are “early 1990s.” The fact that a drug has been

around for an extra decade is an important difference and though this is

a minor error, an article that purports to be a serious evaluation of a

possible therapy should ensure its facts are straight.

[NMSS]: “At significantly lower doses, [Naltrexone] 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.”

[This is

MS]: Actually, treatment with low dose naltrexone was not promulgated over

the internet as this sentence implies, but by Dr. Bernard Bihari, MD, in

1985. Dr. Bihari, who has an active clinical practice in New York City,

discovered the effects of a very low dose of Naltrexone (approximately

3mg once a day, while the FDA-approved dosage for heroin addiction was

50mg’s) on the body's immune system and realized the therapeutic

potential on a wide variety of illnesses. Dr. Bihari’s CV

is available

here.

In short, real doctors prescribe and perform research on LDN. The

attempt to associate it with an internet marketing scam is a rather weak

ploy. A great deal of LDN information is indeed shared by LDN users, but

that does not make it any less effective of a therapy as something with a

high-budget advertising campaign.

[NMSS]:

”There are, however, no published reports of placebo-controlled

clinical trials demonstrating the safety and efficacy of naltrexone in

any of these diseases [listed in above bullet point]. The marketing

efforts rely entirely on anecdotal reports.”

[ThisIsMS.com]:

This is misleading and false. A quick search on PubMed reveals the

following study (among others):

Neuroimmunotherapy of untreatable metastatic solid tumors with

subcutaneous low-dose interleukin-2, melatonin and

naltrexone: modulation of interleukin-2-induced antitumor immunity

by blocking the opioid system (Lissoni P et. al., Neuroendocrinol Lett.

2002 Aug;23(4):341-4).

To add insult to injury, this study concludes:

”…it is probable that a cancer neuroimmunotherapy with IL-2 plus both

MLT and NTX [Low Dose Naltrexone] to activate TH1 and suppress TH2 cells

respectively, may deserve more promising results in the treatment of

human neoplasms according to the psychoneuroimnunological

knowledge.”

Not to mention the clinical trial underway investigating the use of

LDN as a therapy for Crohn’s disease

(http://www.thisisms.com/article1.html),

an auto-immune illness affecting the gastro-intestinal tract…

There are others, and the major point is that the “marketing efforts”

of LDN absolutely do not “rely entirely on anecdotal reports.”

[NMSS]:

” 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.”

[TIMS]: According to Webster’s dictionary, ”enhance” means “to improve.”

Enhancing what they are calling a broken immune system is not

recommended? No further comment is necessary on this downright

shocking statement.

[NMSS]: ”The goal of currently approved treatments is to inhibit the

overactive immune response rather than boost it.”

[TIMS]:

While this is a true statement, has the NMSS lost sight of the fact

that the CRABs, which for the most part aim to squash the immune system,

show a meager ~30% efficacy rate, and oftentimes struggle with

statistical significance? This is, of course, independent of their

oftentimes brutal side effect profiles. Is it beyond the realm of

possibility that the currently approved treatments are incorrect?

This would have been a perfect time for them to explore that possibility

and suggest a trial for LDN to see if the direction of treatment should

be changed, but there is nothing but ominous silence and further slander

against LDN…

As a whole this is a sloppy, ill-informed and manipulative article. It

first claims to “know it all” about LDN and why it would be bad for an MS

patient, then “plays dumb” when it comes to misrepresenting a study that

on basic analysis actually supports the use of LDN instead of

indicating against it. We are quite honestly shocked to see this article

attributed to Dr. Bowling, who has previously done such good for the MS

community, particularly with respect to research on complimentary

alternative medicine.

The NMSS is a savvy organization that is well aware that publishing this

information would create fear and uncertainty in the public, both amongst

patients and especially doctors who are too busy to investigate the

article’s claims and take them at face value. While it may have been

their genuine aim to protect the public from what is admittedly an

experimental treatment, it was an irresponsible, reckless, and insulting

move to publish an article with such inconsistencies and questionable

motives. A retraction and/or correction should be published immediately.

Furthermore, given this article’s clear agenda, the NMSS owes an

explanation to its constituency on why it has no serious interest in

funding a study on an affordable, easy-to-use drug that hundreds of

MS’ers already swear by.

The goal of ThisIsMS is ultimately

to no longer exist—when MS inevitably becomes a routinely treatable

disease, there will be no need for our site. We embrace that fate,

because it means millions of people across the world will no longer

suffer. With that in mind, when we spot situations where it seems there

is heavy and suspicious resistance to the exploration of extremely

promising alternative therapies, we will act to defend our community. We

are a tiny site, but we can do a great deal of good because the truth is

immeasurable.

Please feel free to republish this article, as long as you include a link

back to ThisIsMS.com and do not

alter the text. All inquiries may be addressed to

talk@...

Good luck to all,

-ThisIsMS.com

----- Original Message -----

From:

To:

MSWatchers

Sent: Tuesday, May 18, 2004 23:43

Subject: [MSWatchers] Re: Request for Neuro names

The NMSS on LDN. What a shame:

http://www.thisisms.com/article-107--0-0.html