My NMSS correspondence

[Guest guest]

Below is my back and forth correspondence with the vice-president for

research at NMSS. I think they will fund the research, if a bonafide

investigator applies for it. To see the start of the correspondence,

go to the bottom of the page and then scroll up.

Yash

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As stated, the National MS Society is open to considering any high

quality and relevant research protocol. This is stated clearly on

the Society's web site.

Claims that the Society is controlled by " big pharma " are patently

untrue and unsupportable. You would do a service to work to dispell

such claims.

We agree that there is no downside to supporting a trial of any agent

that has the potential to safety and effectively treat MS. There are

many such agents. Naltrexone may or may not be one of those. And

any clincal trial for this agent, as with all agents, may or may not

be designed to clearly demonstrate its therapeutic potential.

You and your associates should focus your energies on convincing

physicians who claim benefits from this agent in the absence of

controlled clinical trials data to design, propose and undertake the

studies that are required by dictates of good scientific

investigation and also required by regulatory authorities.

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

From: Agrawal, Yash Sent: Monday, May 17, 2004 5:05 PM

Reingold

Subject: RE: MS research

Thanks again for your prompt reply. I very much appreciate the fact

that you are willing to atleast consider funding LDN research. Since

LDN is untested, what the MS community requests is specific funding

for LDN as related to MS.

Why not specifically declare on your web site, that the NMSS is

seeking applications for a LDN trial. In this way, you will respond

to the unmet needs of the MS community. The controversy of whether

LDN works will be laid to rest, the reputation and integrity of NMSS

will be maintained and MS patients will continue to donate in droves.

Failure to fund a trial will only lead to more vocal demands for a

trial (this is happening), speculation on whether the NMSS is

controlled by big Pharma (this is happening), boycott of NMSS funding

drives (this is happening too) and negative publicity in the media

(may start soon at NMSS events). There is no downside to sponsering a

specific trial for LDN. I am amazed that NMSS is not turning this

into a positive public relations opportunity for the MS community.

Afterall, you will spend the research money anyway, why not spend it

on what the MS community wants ?. Why not have a LDN funding drive if

money is the issue.

If specific LDN related funding is available, I am confident that

leading US and international researchers will apply for it. I know

for a fact that some european groups are looking into this, and

perhaps a leading US group might also consider it.

If you wish to discuss the science behind why LDN will work, I am

happy to discuss the working hypothesis too.

Thanks,

Yash Agrawal

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

From: Reingold

Sent: Mon 5/17/2004 2:52 PM

Agrawal, Yash

Cc:

Subject: RE: MS research

Thank you for your note.

The National MS Society will consider for support any well

designed study related to MS, of any nature. All submissions for

funding consideration are scrutinized for scientific merit and for

relevance to MS. We have two grant review deadlines annually. In

addition, the National Institutes of Health are a viable source of

potential support.

Low dose naltrexone has NEVER been the topic of a research

funding submission to the National MS Society. Should one or more

qualified investigators wish to design and submit for consideration a

bona fide clinical trial, the Society would be more than happy to

consider it for funding. This is exactly the same situation under

which the Society operates for ALL proposed studies.

Anecdotal reports and patient self reports are insufficient,

for ANY medication, to claim benefit and safety;.

You and your colleagues and anyone else who believes that low

dose naltrexone has a potential role in treatment of MS would do far

better to expend effort on the design and submission of a bonafide

clinical trial.

S. Reingold

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

From: Agrawal, Yash

Sent: Monday, May 17, 2004 11:21 AM

Reingold

Subject: MS research

Dear Dr.Reingold:

This is in connection with the recent

note published by NMSS regarding the use of low doses of naltrexone

(LDN) in the treatment of MS.

The note by the NMSS has caused a lot of anguish amongst MS

patients. There is talk of boycotting the NMSS fund raising

activities as well as the feeling that NMSS is controlled by big drug

companies. In a few short months, the international petition for a

LDN trial has collected over 4000 signatures. A self reported

internet survey of about 300 patients, reports far better results

than those for any of the standard therapies. While the NMSS has

taken the stance that patients come up with these untested therapies

all the time, have you considered that they might even be right for

once!.

It is unfortunate that NMSS is not taking the lead in this,

in the process you are causing incalculable harm to your

organization. Already, certain European groups are evaluating the

available anecdotal evidence and considering a pilot trial. The LDN

movement is unstoppable. If someone else does a trial, while the NMSS

is still in denial mode, the loss of trust in the NMSS will be

irreparable. You may be surprised to know that LDN is undergoing a

trial for Crohn's disease at the Penn Hershey Medical Center.

I would therefore urge you to fund a rigorous trial, and in

the process help MS patients as well as redeem yourself. Should you

be interested to support a trial, I would be happy to provide more

information. Why not do a trial and prove that LDN does not work ?,

or that it does ?.

Thanking you for your consideration.

Sincerely,

Yash Agrawal