Note: This entry was originally written in 2011, and edited several times to update info as it became available.
However, the last time I edited it, Blogger changed the URL and redireced everyone trying to find this entry to a dead page (C'mon Google- don't be evil!).
So, here is an updated version. Comments on the original page are at the end of the entry and are very worth the read!
http://recoverfromstroke.blogspot.com/2011/04/neuroaid-theives.html
Thanks! -pete
Amendment: August 12, 2013: A well run clinical trial using
1000+ participants showed neuroaid "...is statistically no better than
placebo in improving outcomes." Find the results here.
(Thank you Ali Hussain
Ali).
From April 16, 2011:
Bottom line
- Neuroaid is a drug that is made
from traditional Chinese herbs.
- Cost: $1,346
- Effectiveness: The company says
it works. The research disagrees.
Neuroaid has long been
an easy joke among neurologists, physiatrists and researchers. Here is an
actual email:
Colleagues:
It
looks like millions of lives will be restored. How absent minded of me to tell
patients that there is no “magic bullet” for all of these years…and shame on
you therapists and physicians for not giving the below to your patients. Thank
goodness for Neuroaid.
I really had no opinion
about it because on the face the claims seemed dubious so I never took the time
to unpack the research.
But that all changed
when neuroaid decided to call their blog The Stroke
Recovery Blog (TSRB). They did this in 2010. It is true: You
cannot copyright a blog name, especially not one with a generic name like TSRB.
But they picked this name for a reason: It is an established name in
stroke blogs, has been around since 2008 and is generally respected. ("So when folks look for that blog, they'll
find our blog- We are geniuses!")
(Amendment: March 7, 2014: I have since changed the
name of this blog. This had nothing much to do with neuroaid's weird co-opting.
It had more to do with the fact that the blog is an adjunct to the book,
Stronger After Stroke)
In any case, their choosing to steal this blog's name made me
realize that the company that makes neuroaid may not be completely truthful.
So I did a bit of
investigation....
There are several
problems with their research.
- There is an
obvious conflict of interest with regard to many of the folks
involved in the research. That is, the people who are doing the research
work for the company. This is bad, and it happens all the time. The profit
motive may (or may not) sway the researchers to "massage the
data" so that the data suggests that the product is AWESOME!!!
- Consider Marie Germaine Bousser (this link is now dead, probably because of this writing. In fact, Dr. Bousser appears to have worked hard to distance herself from the company, online at least...). She is (was?) on neuroaid's scientific advisory board. She
is also one of the researchers of the product (last author). The same is true with others on neuoraid's
scientific advisory board. Here's my question...how do they get away
with that? The lab I work in does trials of products all the time but
we have to sign conflict of interest forms that clearly separate us from
the product tested. A lab can get itself in trouble (and often
through sheer osmosis, other labs at the same and related universities)
when you get paid for your "research." (If you want a nerdy take
on this issue, click here.) There are a few studies on neuroaid that show up in Medline. Only one of the studies, from Iran, does not involve
at least one author that is on neuroaid's board.
- (addendum 6.7.15: Interesting fact: The study
in which neuroaid has touted, called the
CHIMES-E study, is thick with conflicts. First, at least 2 of the
authors are on neuroaid's scientific board. Further (you can't make
this stuff up) neuroaid's parent company "... provided
grants to the CHIMES Society of which the society had sole discretion on
use." And, uh, one of the authors owns stock in neuroaid's distributor.
And, the name of that distributor? E*Chimes! Has a ring to
it!
- Neuroaid is made with "12 different Chinese herbs plus extracts of leech and scorpion." that are probably available in any Chinese drug
store in any major American or European city. You can also buy some of
them online. Here's one on Amazon. Here is another herb called
"Strokaway." Here are more. Scorpion venom here.
- (Have a look at Mike's take on
this in the comments section link at the bottom of this post for more info
on obtaining the drug in alternative ways. Thanks Mike!)
- According to their site
"...the price for NeuroAiD .... One month of treatment is US $488,
including shipping fees. The standard 3-month treatment costs US$1,346
including shipping fees."
- The main way of measuring the
drug in their biggest clinical trail was something called the
"Comprehensive Function Score component of the Diagnostic
Therapeutic Effects of Apoplexy." Measuring recovery after stroke
is my area. Since the late 90s I've done all kinds of tests of recovery
from stroke. I've never heard of the the test they use. And there is no
way to research it. Medline has no mention of it. Google only produces
results that reference guess who? (Apoplexy is a term that has
not been used to describe stroke since Andy Griffith!)
- An interesting discussion here. My favorite line: "not surprised that neuro
aid is expensive... I wish I could get my hands on those people."
- Neuroaid claims it increases
BDNF, a protien in the brain that helps recovery from stroke. As with many
of their claims, there is a grain of truth here. They did find an increase
of BDNF in one French rodent study.
- "Alternative medicine that
works is called medicine." I think my colleague's email, in blue
above, suggests the primary problem. If neuroaid had reached the level of
evidence that neuroaid claims then why would MDs not suggest it's use?
Because MDs don't want people to recover because....uh...
- NOTE: I don't know
this drug does not work. But by any stretch, the evidence is thin.
Bottom line:
- A company makes
strident claims with little research to back it up.
- Company's PR firm decides to
hijack "hits" from this blog to their profitable website
disguised as a blog.
- Reference articles
30 comments:
I had a chat with a
Chinese doctor when I found out about Neuroaid when I was 6 months post-stroke.
He saw the ingredients and told me that they were very popular in China, and
all would cost $ 1.00.Of course Asians believe that the herbs work because of
their long tradition helping patients over that side of the world together with
acupuncture and massage. But hard work is the most important force that drive
the recovery of patients over there. Herbs alone don't do much.
NeuroAid is equivalent
to the "Great Yang Restoration Pills" popular in China but so much
cheaper. Do the pills work? The Chinese prefer the freshly made tea because all
synergistic components are present in the right amount.
They've started
posting on some of the stroke blogs. And when I called them on the provided
research.
They replied back listing this research as proof.
http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000155220
I read this and pointed out that this sentence in the report showed that there
was no scientific benefit.
The impact of Neuroaid treatment cannot be differentiated
from the contribution of natural recovery, medication and physiotherapy
effects. However, all cases reported
improvements. The next day the complete post was gone and a forum
representative called me a liar when I posted the exchange again and basically
said that Neuroaid must have complained to the forum to get the posting
deleted. The forum denied ever deleting it and came close to blackballing me
again.
Keep up the good work Pete.
Dean
Thanks Mike and Dean
for your comments. Dean, I fully expect there to be some sort of fallout. Don't
be surprised if this blog gets hacked somehow. I would like it if they'd
contact me. Maybe I'm missing something important.
My question....Could
it be harmful??? I'm probably doing a lot of things that might not help, maybe
they will, but they're not going to hurt me. While objective clinical data is
always best, to do no harm is at the top of my list too. I just want to keep getting
better. I'm doing all the hard work already, adding a supplement seems like an
easy add on.
There are 2 ways of
looking at the safety issue. 1) This or similar drugs have been used in China
for a long time. 2) There are studies on safety of what is alternatively called
MLC601, Danqi Piantang Jiaonang (DJ) and MLC901. They all indicate safety. Keep
in mind, there are 7 studies of the drug. Please see the reference link at the
bottom of the blog entry, which I've added to help you answer your question.
to mike i wanted to
ask you that i had a stroke at the age of 23 im nw 24 its been jus over a yr
and was hoping if its still worth going to see a chinese herbalist as ive come
to a stand still in my recovery rate can u offer any help?
RE:advertisement on
t.v. concerning stroke. The ad says to get treatment within 3-4 hours. But does
not say that there is a new drug that must be administered within that time
frame and will reverse the effects of the stroke completely. Rather than stress,
or along with stressing the time frame, they should stress the benefit of the
drug as well.
The AMA and the ads on
t.v. need to stress not only time factor in responding to a stroke,, 3-4 hours,
but also that there is a new drug that will reverse the effects of a stroke
when administered in that time frame. With emphesis on the DRUG & TIME frame.
thank you
I too fell for the
touted benefits of NeuroAiD. Searching the internet for anything to help my
recovery, I unfortunately took the bait, hook line & sinker. In my humble
opinion, a complete waste of money.
A lot of money!! $1400 for a one month supply. Save your money & find
someone trained in traditional Chinese medicine. They can provide the exact
formula at a fraction of the cost.
On another note, I did have some good results with hyperbaric oxygen treatments
Evo: Thanks for the
comment. I'm skeptical about hyperbaric.
i just found this
site...a man in the care place near my mom had some wound treatment in the
hyperbaric chamber - i was told by one of the aides or nurses that as result,
he had a stroke (he had it done at the hospital)
what a shame!
Hi All,
We used NeuroAid on our daughter, in a super dose. She got 2 capsules 4 times a
day for close to 8 months when she was home after the stroke and a couple of
months in a rehab hospital. She is a super miracle. Without the NeuroAid she
would still be in a wheelchair and sleeping all day long. Now she DRIVES her
kids to their sports and even does her own exercising now on her own. Shopping,
driving, housework and cooking,, she does it all.. try it you'll like it......
I hope you use it if you can afford it.
TinaMarie: That's
great news. But, as I'm sure you know, your story is at best a case study with
an "N" of 1, uncontrolled, not blinded nor with standardized outcome
measures. I'm glad your daughter made fantastic progress, but there is no way
to directly tie recovery to the product.
Hi I am just about to
buy neuroaid for my brother who took a stroke in march this year aged 43 ,I
admit I am fifty fifty on whether to believe it or if it is a load of bull,but
at same token I don't want to watch my brother suffer knowing what might have
or could have been if I don't try it,I understand everybody's view on why does
doctors not just prescribe it everywhere if it is so magical ,I have my own
opinions on that,,anyway when. Purchase this and try my brother on this I will
return here in a few months with an honest opinion, I am not the type of person
who will exaggerate or kid myself on oh this has made great improvements if it
has not, as I would hate anyone else in my position to waste money when they
could use it on something else that could help them or a family member, so as
said I will return here again, I don't give up for my brother I never ever I'll
he has right hand, arm paralysis and his foot also not too good,I will monitor
all of this as I go and help with his home exercises, miss Fiona McIntyre
hoping I can bring great news to anyone else in this position and to my brother
also he's a great person who deserves I try this for him..
Chimes study failed.
Neuroaid doesn't work
end of story
Ali! Thank you! I was
not aware! I'll amend the post.
Two comments:
1. Ali, please list your source info instead of just dropping a bomb like that!
I am trying hard to make informed decisions. Also would love list of NeuroAid
advisory board members.
2. Also, really doubtful about hyperbarics (HBOT) causing a stroke. The
depth(or atmospheres)for wounds is much greater than for CNS issues. It has a
great safety rating and is showing improvements for neurocognitive deficits but
not enough controlled studies for that yet. Money isn't in it because it isn't
a drug that can be patented! Daughter used HBOT for cognitive insult from tumor
removal, best and lasting result was improved balance! Also greater interaction
with people.
Please note that the
actual study is in the link at the top of this blog entry. Also, I'm not seeing
where anyone claimed HBOT causes stroke. But it has no proven efficacy in
humans/stroke.
This comment has been
removed by a blog administrator.
total waste of
money.used the product for more than a year!i can testify if needed!
Hi All. My dad had a
stroke in Aug 2013. I found his almost motionless inside the shower room at
about 2 am and immediately called for an ambulance which they confirmed he had
a stroke at 4 am. I left the hospital and returned next morning around 9am and
was very sore to see his left facial paralysis almost too sudden.Our family was
introduced by a friend on NeuroAid.we were not able to afford even after making
alot of calls to check and beg for a discount. Someone told us it was
originated from China and is costing alot cheaper. Immediately we managed to
get someone to buy from China and for a 2 months supply which is also the
minimum dosage to "heal" my dad. Aside to the price different, this
supplements make miracle. Our family witnessed how fast it healed my dad.on
that firat morning and evening that he consumed the pills, that very evening
his facial paralysis was completed lifted up just like before but his speech
was still not completely clear.now after almost about 8 months and with 2
cycles of 2 months NeuroAid pills, he is able to work and eat himself. I
strongly believe NeuroAid has it effectiveness. Is more than a miracle that we
actually witnessed the fast reaction of this supplements.
Hello Geofio,
please can you update on the outcome of your brother whom you bought nueroaid
please.
hi my 28 daughter
suffered a stroke on 14/3/14, affected left side of body - hardly any movement
in left arm and whilst left leg was responding well and she had regained normal
walking movement this has been severely reduced following an angiogram on 28/4.
Considering Neuroaid but concerned about financial outlay as low income family
- will be buying on a credit card. Would be interested in opinions and Geofio
update on the effectiveness of the product on his brother. Will also be trying
acupuncture and hypnotherapy. Many thanks Kim
I just want to say
with mother NEUROAID worked!
There are 2 claims
here that neuroaid worked.
I was at a local flea market the other day. There was a guy there hawking a
cream that he said had crystals in it. 2 days later my daughter hurt her knee.
We put the cream on her. 2 days after that, her knee felt better. Its a
miracle! It works!
Or not.
This is why well controlled studies by folks who know how to do studies are
helpful.
Everyone wants to believe there is a cure to stroke. Those same people wouldn't
know an independent variable or a case series or what an institutional review
board did it if hit them in the head.
Hi! I had 7 strokes in
late '09 leaving me completely right side paralyzed. After 6 months of pills I
started reducing and eliminating them. Continued with PT / OT after finding an
authentic Traditionally trained Chinese Acupuncturist who also does Chinese TCM
herbs.. and has taught in the area for over 2 decades. I showed him the
information that I was lucky to have found regarding both Neuroaid and Moleac.
I had the ingredients list and copied them down in a notebook. (Moleac is the
European version without any animal products). My TCM Dr told me these are
common TCM herbs and products and don't cost a fortune. We put together his
version and I have been doing acupuncture with him. I can see and feel the
difference over a matter of months. But, as Mike said, "Herbs don't do it
alone". You must do everything you can to get better". That includes
EXERCISE, Proper NOURISHMENT, CLEAN WATER, PT/OT, Meditation, Massage,
Reflexology, and surrounding yourself with Peaceful Positive People. Your Caregiver/Carer
needs this as well! I am now nearly 5 yrs post stroke - walking (jagged but on
my feet), raising my arm to a certain point (working on it daily), my speech
normal, my shoulders even now, and OT has me standing with a racquet, swinging
(with both hands) and hitting nearly every ball thrown but not yet stepping
forward. I am standing with a racquet and hitting almost every tennis sized
ball these days in OT (using mainly the affected arm, holding the bottom 2
inches supporting with the good hand) So don't put down methods that are
1,000's of years old just because you listen to a Western Dr. I, also, use
e-stim 2X (ZYNEX brand NMES unit), CRYODERM lotion for muscle pain, and soak in
Epsom salts using a Bath Lift. The Stroke affected side has a loss of
circulation or poorer than the unaffected. Keep stimulating that affected
side!! DEEP tissue massages (BREAKING DOWN the Ligatures that tighten down
causing spasticity) in the palm of the hand, up the arm both sides, into the
shoulder and the back, down the legs at least twice a month. Daily or weekly
have Reflexology done on your feet and hands, using Arnica oil mixed with
Peppermint lotion (with real essential peppermint oil drops)does wonders! NEVER
give up! Stretch your fingers back with the other hand, keep your wrist supple.
Have someone [lay "This Little Piggy" with your toes! AHhhhh, yeah!
That's why Moms all over the world do that with their babies! I have a SAEBO
stretch for night use and a SAEBOflex for daily workout. The flex holds my
fingers OPEN so that I am working the weak muscles on the posterior side of the
forearm...which does affect the muscles in the upper arm. COMPLEX beings that
we are!!! In the gym, I have graduated from the rehab equipment to the
stationary cycle (for endurance), the rower (which bends the toes), the (caged)
elipitial (which teeaches you how to walk (if done turtle slow), and find
what's lacking is a steering wheel, shifter, and foot pedals... ya with me?!!!
Check out the site Bcenter.com that informs and is raising $$$$ to build a
Center in SE Orlando where Stroke Survivors may go for productive therapy at
reduced cost for 6 weeks a year. Get well! Surround yourself with positives and
positive people!! Do Brain Games, get your fav music on an iPod, get out and
about. Most of all, be patient with yourself!
My wife had a
hemorrhagic stroke last 01/25/2014 and affected her left side. She was in the
hospital for 39 days. After PT,OT SP, she can now walk slowly with a 4 point
cane but she has problems when her left foot get stuck at carpets, doormats walking
on uneven ground. Her left arm, hand and fingers are still very weak. She could
hardly grip or raise her left arn. I would like to know more about NeuroAid if
it really works. Waiting for Giofio's update on his brother.
Here is the list of
sites where they run the trial:
https://clinicaltrials.gov/ct2/show/NCT00554723
You can find the results here:
http://www.ncbi.nlm.nih.gov/pubmed/23780952?dopt=Abstract
http://www.ncbi.nlm.nih.gov/pubmed/24135924?dopt=Abstract
This was published by
Reuters, a highly reputable business publication. If this was successful, it
would skyrocket the stock, but investors want to know the whole story. That
large 3-month study that was done, that did not publish the results, failed. My
suspicions were correct. If the study showed some efficacy, they would be
broadcasting it all over the place. It would take their company stock to
millions, if not billions of dollars.
Here is the link to the Reuters article.
http://uk.reuters.com/article/us-herbal-stroke-remedy-idUKBRE9640U620130705
Following is a link to the source and final results of the study.
The Conclusions was, that MLC601 (which is Neuroaid) is statistically no better
than placebo in improving outcomes at 3 months when used among patients with
acute ischemic stroke of intermediate severity.
http://stroke.ahajournals.org/content/early/2013/06/18/STROKEAHA.113.002055.abstract?sid=0f60272c-96a4-48d2-b395-36b543d74b67
Keep in mind, that this does not mean Neuroaid is a scam. Although it is
definitely overpriced for the ingredients in it (a blend of extracts from
plants, leeches, beetles, scorpions and antelope horn). This just means, that
when put to the actual test, Neuroaid patients showed no significant difference
improvements over the placebos. That means that there possibly could be a small
improvement, but it would have been so small, that it could easily be
attributed to chance.
In short, the company pushing Neuroaid, Moleac, takes great pain to mislead
people on the benefits on Neuroaid. Their write-ups indicate that the real
double blind studies which showed no improvement in using the product, as
showing significant improvement. That is just an outright misleading lie. They
also setup blogs that are closed (I assume, so that no one can point out the
discrepancies) and of course, there is the glowing reviews on other blogs, that
tend to be the same person.
Last, people tend to want things to work out right for themselves, especially
when they pay heavily, and often will attribute benefits to some magic elixir,
that had nothing to do with those benefits.
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