NICE Brits 281 and Californian Quacks 305?

I have to thank Paul Whitely  for a post on his website that I am hijacking today.  Click on Paul’s name to go to his blog.

National Institute for Health & Care Excellence (NICE)

NICE is an organisation in the UK, funded by the Department of Health.  They produce excellent guidelines on  most medical conditions for both doctors and patients.  They are all available free on line.

NICE & Autism

NICE are producing a guideline called:-  

Autism, The management and support of children and young people on the autism spectrum.  The guideline is still in the draft stage, but there are two versions:-

Full version (790 pages) 
Summary (40 pages)

You may wonder who on earth is going to read a 790 page document.  The 40 page document does not say a lot, you could summarize it as folows:-

•  Carers (parents) are unsupported, miserable and financially strained

• Children should have access to care and therapy, that does not currently exist

• Local autism teams should have the skills to provide, or organize, the interventions and care recommended in this guideline, but they currently do not have these skills.

• No magic cure exists

 

The NICE list of Dos and Don’ts  (Mainly Don’ts)

DO NOT:-

Do not use the following interventions for the management of core features of autism in children and young people: 

·         antipsychotics

·         antidepressants

·         anticonvulsants

·         exclusion diets (such as gluten- or casein-free diets)  -  sorry Paul

Do not use omega-3 fatty acids to manage sleep problems in children and young people with autism.

Do not use auditory integration training

Do not use the following interventions for children and young people with autism in any context:  

·         secretin

·         chelation

·         hyperbaric oxygen therapy 

DO:-

Consider a social-communication intervention for the management of the core features of autism in children and young people. For pre-school children consider delivering the intervention with parent, carer or teacher mediation. For school-aged children consider delivering the intervention with peer mediation.

Consider the following for children and young people with autism and anxiety who have the verbal and cognitive ability to engage in a cognitive behavioural therapy (CBT) intervention:  

·         group CBT adjusted to the needs of children and young people with autism

·         individual CBT for children and young people who find group-based activities difficult.  

For behavior that challenges, try antipsychotic medication.

  

The 790 page version  -   NICE Brits 281 and Californian Quacks 305

I was rather disappointed by the 40 page version of NICE, so I opened up the 790 page version.  I recommend you do too.  It is totally different.  Some people have spent many 1000’s of hours analysing all the scientific literature on a wide range of biological, social, psychological and educational aspects of autism.

The problem was on page 281.  This is the page where those clever guys over at Stanford 94305, get their research into Glutathione (GSH) mentioned. (94305 is their zip code) 

Then on pages 389/390 NICE give their verdict on the Stanford guys' findings.  They conclude that while NAC does nothing bad, it also did nothing good.

 

Now, I am no medical genius, but nor am I a complete moron. I read the full Stanford research paper as a highly sceptical, but informed, parent. I concluded, as did the Stanford team, that they had found something very important. To get the full report you have to pay $31.50 but I figured it was well worth it. So if this excellent research just gets sliced and diced, and then trashed, in this 790 page review, how much faith do I have in the other 787 pages?

I am with those Quacky Californians on this one.  Those NICE Brits can call me a quack too.

Eat Fish! - all about Omega-3

I did put one very well-known therapy on my list to investigate; that of omega-3 fish oil supplementation.  This is the territory of Complementary and Alternative Medicine (CAM) and maybe not surprisingly there is a lack of high quality research.  This is a pity, because there are some very good scientific reasons why it just might work.

There is only one study that was carried out like a serious clinical drug trial and seemed to show a serious positive result.  It was carried out at the Medical University of Vienna and involved 1.5 g per day of EPA/DHA (0.84g EPA and 0.7g DHA).

It seems nobody else has been able to repeat this result with a similar randomized controlled trial.  What does that tell you?  Maybe those Austrians have a special kind of fish oil ?  Or maybe there is a chemical reaction going on with all that Apple Strudel they were eating?

Even this study did not convince the serious scientists at the University of California, San Francisco.  They did a review of all omega 3 trials from 1966 to September 2008, mentioning autism and omega-3.  It is very readable and their full report  Omega-3 Fatty Acids for Autistic Spectrum Disorder: A Systematic Review  is available free (just click it). A summary, in table form, is on page 1148.  But if you are in a hurry, their conclusion was:-

“there is currently insufficient scientific evidence to determine if omega-3 fatty acids are safe or effective for ASD”

I still have not finished my research, but I can already say with 90% certainly, I know what my final conclusion is likely to be;  Eat Fish ! and I have already implemented it.
 
Here are some undisputed facts:-

1.    Autistic children have lower levels of omega 3 relative to omega 6 and lower levels of the good cholesterol HDL, than typical children.  This implies a lipid metabolism disorder.  If you read my Glutathione (GSH) Part II you will know that such a  lipid disorder should be expected in people with a GSH Redox problem.  NADP/NADPH which is required for lipid and cholesterol synthesis is also required for the GSH Redox chemical reaction.  So if there is a GSH Redox problem (proved already by serious scientists),  NADP/NADPH are highly likely to be involved and if they are, then it is no surprise if omega 3 and cholesterol levels are way off where they should be.  We are already getting side-tracked into the details, just to tell you that NADP is Nicotinamide Adenine Dinucleotide Phosphate and NADPH is the reduced form of the same chemical.  For more info click here.

2.    Omega-3 is proven to be good for the heart, in just about everyone.  The main benefits are related to cholesterol (Hypertriglyceridemia to be precise), cardiovascular disease prevention and high blood pressure.  For a full list of conditions for which Omega-3 has a benefit, to those where it is proved to have no benefit, we have a ready-made solution from the US National Institutes of Health. (Just click and read on), if you are curious to know more.

3.    Always read the label.  There are only two omega-3 oils that seem to have any potential medical benefit; eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA).  Nobody seems to know which is better than the other or what the optimal ratio is.  To do much good to your heart, the research shows you need something like 2g of EPA/DHA daily, note that 2g = 2000 mg. 

Now go look on the label of those expensive fish oil tablets you have in the bathroom cabinet.  For a start you can forget about Omega-6 oil, your diet already has way too much and also ALA, you do not need any more of that either.  It also looks like any Omega-9 is not going to do much either, your body can make that itself. Omega-3 and Omega-6 oils are considered “essential” fatty acids, since your body cannot make them, and it does need them.  Western diets have far too much Omega-6 and too little Omega-3. It seems that the ration is often 10:1, when it should be much closer to 1:1.  Processed junk food is full of omega-6.

 

 

one capsule contains  180 mg of EPA /DHA ( no data given is it mainly EPA or DHA)

one capsule contains 192 mg of EPA / DHA (24g EPA and 168g DHA)

 

Eye q liquid.  5ml contains 244mg of EPA / DHA (186g EPA and 58g DHA)

• Entire 200ml bottle has 9.8g EPA/DHA.
• 500g of farmed atlantic salmon contains 10.7g EPA/DHA

 

If you do want to give EPA/DHA to your child why not give them fish to eat?  It may be true that tuna and swordfish have high levels of mercury, this is because they are large fish.  Large fish eat small fish and then accumulate mercury.  Large sea fish tend to be very expensive and beyond your budget anyway.  There are smaller cheaper fish that are full of EPA/DHA.  The U.S. Department of Health and Human Services (go on, click it) produces a great list of hoe much EPA/DHA is in 80+ types of fish.  Note that tinned tuna has almost no EPA/DHA because it is cooked before it is canned.

 

• A cheap fish like farmed trout has 1.15g EPA/DHA per 100g
•  Herring has even more oil; it has 2g EPA/DHA per 100g

•  Farmed salmon has 1.2g EPA/DHA per 100g

•  Don’t forget sardines, anchovies, mackerel, whitebait etc.

 

Depending on where on the planet you live, the price of both supplements and fish varies greatly; but by my calculations it is much cheaper to eat the fish.  Fortunately for me, Monty just loves to eat all kinds of fish, not just fish fingers.

 

Conclusion

 

There is currently no proven scientific case to give expensive omega 3 supplements as a treatment in autism.  It would be pretty straightforward to conduct such research; the fact that it has not been done, must tell you something.
 

There is a single interesting study that has not been replicated.  Even that study used dosage  levels of EPA/DHA that are 6 times higher than the supplement makers are recommending.  So a EUR 20 bottle of Eye Q would last you just 6 days.

 

There is plenty of evidence that fish is good for you and your son.  So just eat fish, and plenty of it. Maybe it will help with his autism, maybe not; it is certainly much healthier than red meat, processed meat and even his favourite chicken nuggets.

 

 

 

 

Rats in the Basement - lab update #1

This may be only the 4^th post on this blog, but in the background research is actually quite far advanced.  A few hundred learned papers on, have there been any further epiphanies?

Well at the risk of sounding smug, I have to say yes, or least maybe.

 

When I started out in late January 2013, I knew that rats in the basement was not going to be an option; either my elder son would use them for target practice, or my wife would object.

My original plan was to rely on my powers of observation to guide my research and just draw on the pool of existing scientific research as needed to develop a plausible hypothesis, that could then be tested and quite likely rejected.  This is more like primary research, the fun type. I used to do a lot of this.  Primary research is used extensively in the business world and sometimes verges on espionage.

In primary research I now have two projects:

 

·         TRH and more specifically TRH analogs.  This looks very promising, but gets pretty complicated and there will be lots of citations.

·         Hypokalemic Sensory Overstimulation.  This may prove to be just a curiosity.

Secondary research is what most people do.  It is all about reading other people’s research and then either dutifully regurgitating it, or putting a new spin on it and taking it forward.  I used to this a lot and it can also be fun.  The interesting thing I learned is that two different people, or “expert” teams, could look at the same data and come to diametrically opposing conclusions.  This has great relevance to Applied Neurological Analysis, which as from post #1 is now officially known as ANA.
 

Researching TRH took me into the depths of research concerning a wide range of psychiatric disorders, addictions, epilepsy and even HIV-AIDS.  It also led me to read some much lighter weight studies that actually did have the word autism in them.  Then one evening, on Google Scholar, I was jumping between Hyperbaric treatment for autism and vitamin B12 injections and had about 20 windows open on my laptop.

 

Just as lithium-ion batteries can overheat and start smoking on Boeing 787s, it is also possible with your laptop.  Not wanting my research to be grounded, I picked up the pace.

 

I was reading a paper that was in effect junking the use of Methylcobolamin (Methyl-B12) injections in autism.  Then I saw that it mentioned a subgroup for which it appeared the therapy had indeed produced a measurable  positive effect.  The author hypothesized that in these children the B12 was somehow raising the level of Glutathione (GSH). A-Ha and what exactly is that?  All will be revealed in a later post.

 
This led to 2 developments:-
 

·         Open up an investigation into GSH

·         Note that sub-groups can exist in autism and so there just may be more to a “failed” clinical trial than meets the eye.

 
Having allowed the laptop to cool down, I did a trawl through the research on Omega 3 fish oil.  I am not a follower of Complementary and Alternative Medicine (CAM), but it turns out that its followers are big buyers of fish oil.

I used to take omega 3 capsules because I read they are good for your heart.  A friend recently asked us to pick up some special ones in London that are supposed to make your kid get higher marks at school.  It turns out that even my Mum used to be given cod liver oil and malt during World War 2.  I would have written “during the war”, but in many parts of the world, where you read this blog, it then raises the question “which one?”.

Having learned from my friend Colin, that you can actually be allergic to specific kinds of fish, I had discovered a few months back that I too have intolerance to farmed salmon and trout.  When I looked into what they feed the fish, I soon came to believe that this was a plausible cause of my symptoms.  So this means no more salmon and much less “natural” omega 3.  It turns out that some people are even allergic to the fish oil supplements as well, but thankfully not me.

I concluded that I have a ready use for a large batch of unwanted, long expiry dated fish oil, should I need one.  So I decided to add an Omega 3 to my secondary research and potentially add it to the primary research pile.  I do admit to starting with a sceptical bias.

As you can see, often you need both primary and secondary research for the same job, but for the moment at least, there are no rats in the basement.

 

 

P.S.

If a further dose of humour is required at this time of day, ponder the reaction of the Japanese airline executive from ANA (All Nipon Airways) who is googling to see how much PR he is getting due the Lithim-Ion batteries in his parked fleet of Boeing 787 Dreamliners. Colin will be famous in Japan, as he deserves to be, and the sales of fish oil will rise.