Thursday, September 1, 2016

Overchallenge for Stroke Recovery

Overchallenge. I'm not sure its a word, but it is essential to stroke recovery.

Overchallenge forces something to change. The word forces is important. Some of the best strategies for recovery involve forcing the survivor into something that challenges them towards recovery.

That last sentence has a lot to unpack. So lets unpack...
First, "forcing the survivor" is not really correct. The survivor forces themself. No one likes to be "forced" to do anything. Plus, it won't that way. When it comes to relearning movement after stroke, no one can force you. I can't force you to learn movement. But you can, and do, force yourself to learn. That's the way it works: The brain changes according to the owner's wishes. So, survivors self-force their own overchallenge.

Second, the word forced is accurate because that's exactly what is done. Take forced use. Forced use is when the survivor uses their "bad" side for a certain amount of time. 

(Note to nerds: Forced use therapy (FUT) and constraint induced therapy (CIT) often get confused. 

FUT: The survivor uses only their "bad" side for minutes to hours per day, at home.

CIT: The survivor has their behavior "shaped" by a clinician with repetitive practice of component parts of a skill. It is usually done with 3-6 hours of practice in the clinic with a therapist, as well as FUT done at home)

Third, overchallenge requires a forcing into an area that the brain is uncomfortable. Usually, the concept of overchallenge is associated with muscle building. But with regard to stroke recovery, overchallenge has to do with brain building. And the brain does not want to build. It does not want challenge. Because here's how the brain looks at it "Why should I challenge myself? If I do, I will change. And what if I change into something I don't like?" 

But overchallenge is exactly what the brain needs to recover. Here are a few of recovery strategies that use the overchallenge concept:
1. Constraint induced therapy
2. Forced use therapy

But overchallenge could be walking longer distances, challenging your balance on uneven surfaces (safely, of course) not relying on aids of various kinds, etc. Even something like reaching...even ...further, across a table for something has the ability to overchallenge. 

Sunday, August 14, 2016

Neuroaid: Partial Truth and Petty Theft

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
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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 AmazonHere is another herb called "Strokaway." Here are moreScorpion 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:
Mike said...
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.
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Mike said...
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.
oc1dean said...
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
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Peter G Levine said...
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.
Peter G Levine said...
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.
amina said...
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?
jacque said...
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.
jacque said...
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
Evo said...
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
Peter G Levine said...
Evo: Thanks for the comment. I'm skeptical about hyperbaric.
deirdre said...
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.
Peter G Levine said...
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.
Geofio said...
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..
Ali Hussain Ali said...
Chimes study failed.
Neuroaid doesn't work
end of story
Peter G Levine said...
Ali! Thank you! I was not aware! I'll amend the post.
Andrea Hanson said...
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.
Peter G Levine said...
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.
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Andrea Hanson said...
This comment has been removed by a blog administrator.
Francis Dizon said...

total waste of money.used the product for more than a year!i can testify if needed!
Joanna Tan said...
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.
Lynn said...
Hello Geofio,
please can you update on the outcome of your brother whom you bought nueroaid please.
Kim York said...
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
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Joel Quintero said...
I just want to say with mother NEUROAID worked!
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Peter G Levine said...
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.
Ginny Spencer said...
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!
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Rey said...
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.
Func said...
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
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LikeToStudy said...
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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