Controversial report indicates little evidence to support long-term benefits of DMT

[agate]

There seems to be some controversy about a recent report coming from the US Agency for Healthcare Research and Quality (AHRQ). The article includes a comment indicating "that meager information exists to guide patients and their physicians in making decisions about discontinuing DMTs. The authors stated that there's little evidence suggesting long-term harms are any greater than short-term harms for patients taking DMTs. Similarly, they stated that there's little evidence supporting long-term benefits from DMTs for patients with relapsing-remitting MS (RRMS)."

Included in the article is this statement by Dr. Rosalind Kalb of the National MS Society:

It's not that anyone is saying anything bad, but I think it's very easy for people to make the wrong assumption that the absence of positive data is the same as negative data, which is what's happening in this paper. We shouldn't confuse those two things," said Rosalind Kalb, PhD, vice president of clinical care at the National MS Society, in an interview....

...
"It's just too easy for the paper to be misused or misconstrued as evidence that continuing treatment isn't helpful," Kalb continued. "We just don't know yet. We should be just saying we don't know this. They say it, it's embedded in the paper, but the structure of the paper and the title of the paper don't go along with that conclusion."

The MedPage Today article (November 17) includes a link to the actual report and can be seen Only registered and activated users can see links., Click Here To Register....

[SuzE-Q]

Thanks for posting this, Agate! Very timely for me.

I understand why there might have been controversy, the questions they were seeking to answer seem peculiar.

I think we all are quite aware that an absence of evidence is not evidence of the opposite, not sure why he emphasizes that, I especially think most doctors and researchers would know this already. I suspect many of our doctors are of the opinion that it's better to have us on something than nothing so long as the risks aren't high, absent evidence to the contrary. They'd rather have something to offer us than nothing when there is a possibility it may help. Perhaps big pharma takes advantage of this vacuum by not filling it with concrete evidence of the status of those who stop the meds?

[Howie]

I've had MS since 1998. I've never taken any DMT. I've had two exacerbations, both in the first year since DX. Yet today, I'm more disabled than I was after recovering from that second exacerbation. So the MS is slowly doing damage very quietly. No exacerbations, but silent progression. Don't stop your DMT just because of this silly report.

[SalpalSally]

What Howie said!!!!

[Lazarus]

I've had MS since 1998. I've never taken any DMT. I've had two exacerbations, both in the first year since DX. Yet today, I'm more disabled than I was after recovering from that second exacerbation. So the MS is slowly doing damage very quietly. No exacerbations, but silent progression. Don't stop your DMT just because of this silly report.

Howie,
My disease course is like yours. Maybe one or two attacks ( one which led to doctors and diagnosis) but then periods of good and periods of bad but no clear attacks. Just slow and very steady progression. Progressive relapsing.

[renee]

My progression is so slow, I don't have a firmly pronounced disease path.
I am consequently treated as an RR.
My 18th year MS anniversary was this week.

Light flares are largely due to stress.
Personal relationships are a big factor.

[Exacerbator]

Say WHAT?!?

...I've never taken any DMT...Don't stop your DMT...

What Howie said!!!!

People seem to forget – or be unaware of the fact in the first place – that MS is really nothing but a "disease model"...



...At least in rats (AKA "most cases")




Those of you pushing your so-called "DMTs" should probably offer more proof to go along with your cheerleading on the topic.

Otherwise, you should probably keep your opinions to yourselves.

[renee]

And I am a Victorias secret model w/meat on her bones.

If I could dump some of my disease associated drugs and medical supplies
I would love to ditch medicaid NY.
The circus jumps, hassles, paperwork, confrontations from a single faulty Medicaid
computer entry are a lot of work.
Oh, to not have that dependence on the state.
The less i need the easier it would be.

I always traveled light and this agitates me tremendously.
The money the gov would save if they kept it simple and stopped throwing it into black holes
of waste, bureaucracy, catering to pharma companies.

Traveling light with a backpack, credit card and a little money.
Wheelchair use has been an enormous shock in some ways eighteen years into it.

I keep looking at mini houses to put on a piece of land near a lake.
Thoreau, here I come!

[SalpalSally]

People seem to forget – or be unaware of the fact in the first place – that MS is really nothing but a "disease model"......At least in rats (AKA "most cases")

Those of you pushing your so-called "DMTs" should probably offer more proof to go along with your cheerleading on the topic.

Otherwise, you should probably keep your opinions to yourselves.

Believe me, no one here is pushing DMTs...UGH!!!! However if you are on one
and it seems to be working for you, then don't stop it because of this article.
"If it ain't broke, don't fix it, stupid."

[Howie]

Sally, I've never had anyone on my "ignore" list...until now. Use it.

[SalpalSally]

Everyone is entitled to their say.....ONCE!!!....LOL

[Virginia]

Sally, what you said is exactly what my Neurologist said "If it ain't broke don't fix it". What is right for one is not right for all, as we all have discussed before on this forum.

[Mike Weins]

People seem to forget – or be unaware of the fact in the first place – that MS is really nothing but a "disease model"...

...At least in rats (AKA "most cases")




Those of you pushing your so-called "DMTs" should probably offer more proof to go along with your cheerleading on the topic.

Otherwise, you should probably keep your opinions to yourselves.

Posts like this one are ok to post up until the part where you tell people "Otherwise, you should probably keep your opinions to yourselves." If your username is not red or purple, you have no grounds to tell people what they can and what they cannot post.