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Full Version: Research for new 'cure' collapses because of parents
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The cure hopes of parents involved in the research ruined the chances of the study being properly conducted.

PROBIOTIC bacteria given to autistic children improved their concentration and behaviour so much that medical trials collapsed because parents refused to accept placebos, a scientist revealed yesterday.

The effect of the bacteria was so pronounced that some of the parents taking part in what was supposed to be a blind trial realised their children were taking something other than a placebo.

A number then refused to give their children the placebo when they were due to switch, resulting in the collapse of the trial.

Glenn Gibson, a microbiologist who ran the study of 40 autistic children aged between four and eight, said this meant it was difficult to draw any firm conclusions and he is planning to carry out further research.

However, he said parents had told him the probiotic bacteria was having a beneficial effect, resulting in "better concentration and better behaviour".

One parent said it was "heartbreaking" to have to stop their child taking it.

"It was really challenging for us and the parents. I'd really like to go back to it and do it in a better way, with perhaps more professional help from people who know how to deal with autistic children," said Prof Gibson.

"The trial ultimately failed because of the large number of drop-outs. About half the kids dropped out. Some of the parents worked out their child was on the test and didn't want to move on to the placebo."

Autistic children often suffer bowel conditions and Prof Gibson said a previous study had found high levels of a "bad" bacteria called clostridia in the gut.

The probiotic was then designed to reduce the levels of clostridia and promote "friendly" bacteria instead to see what effect this would have.

Prof Gibson, from Reading University, said the children appeared to show fewer signs of autism when taking the probiotic supplement, which was given in a powder once a day.

"Very subjectively, we asked the parents to fill in diaries about the mood of the children. We got very positive feedback generally," he said.

He said that certain kinds of clostridia produced neuro- toxins, which potentially could be the cause of autism or a contributory factor.

However, he said this was speculation and the apparent improvement could also simply be because the children had felt better.

"If your gut is not behaving yourself, you feel rough," Prof Gibson said.

The first bacteria in the gut is received from the mother during birth and then comes from the outside environment, with diet playing an important role.

"They [infants] may be under medication for an infection and that may have an effect," Prof Gibson said.

"There are all sorts of different factors that may affect that [the bacterial make-up of the gut]."

There was a scare over widely discredited claims that autism was linked to the MMR - measles, mumps and rubella - vaccine given to children.

Asked whether he thought childhood vaccines could have an effect, Prof Gibson said: "No. I don't think there is anything in this MMR business at all."

It is estimated that 535,000 people in the UK have some kind of autism, including a milder form called Asperger's Syndrome.

The condition affects four times as many boys as girls for reasons that are not clearly understood.

A spokeswoman for the National Autistic Society (NAS), the UK's leading charity for people with the condition and their families, said it followed new research into possible treatments with great interest.

She went on: "There is anecdotal evidence that certain vitamins and diets do have benefits for some people with autism. However, a great deal more research remains to be done in this area.

"The NAS looks forward to seeing the results of the further research that Professor Gibson hopes to conduct in the future."

She said that "rigorous scientific evaluation" was necessary to gauge the effects of any new treatment.

A whole range of therapies had been tried in the past, from medication and behavioural therapy to aromatherapy and swimming with dolphins, with varying degrees of success.

From scotsman.com

Quote:
However, he said this was speculation and the apparent improvement could also simply be because the children had felt better.

"If your gut is not behaving yourself, you feel rough," Prof Gibson said.


I would assume this is what was happening.  That, of course, by itself, is a good thing.

So much of what is seen as negative behavior related to autism seems to me, the more I study, to be reactionary.  To things around or in the individual that are upsetting.  Remove a cause for upset, and everyone benefits.

This sounds to me like a substance without a lot of negatives attached to it.  Or am I missing something?  If it can do some good, without doing any harm, why not make it available?

I see why my duplicate posting of this article was deleted. I for one would be happy to have my bowel problems alleviated but I wouldn't consider it a cure for autism.
It's odd because probiotics are a huge fashion health food in the UK, they are heavily advertised to being healthy for everyone.
I have always been very skeptical of probiotics - they are marketed as being the cure-all but if you get the things escaping your gut, they will kill you very fast. Perhaps I am acting rather irrationally but I do not like the idea of swallowing a bacterial colony.
Probiotics - are they the same little todgers you get in yoghurt?  Acidopholus and bifidus?  Or something else?  My whole family loves yoghurt, but Lauren and I are still AS!
Alison
Well, probiotics are certainly a remedy for arid intestines... which in and of themselves can cause quite a few nutrient defficiency related problems both physical and mental.

However, as all credible research into the causes of Autism seem to point to either heredity or some bizarre occurrance in the womb, I highly doubt that nutrient difficiency caused by arid intestines -which takes years to develop- has anything to do with autsim.

However... I imagine the problem can certainly exacerbate the negative effects of autism: sociophobia, aloofness, extreme tactile sensitivity, etc. while at the same time dulling the positives: focus, objectiveness, unorthodox problem solving, etc.

I imagine an arid intestine can make someone with mild autism appear to have severe autism.
And honestly that's what I think is happening here. Children with mild autism can begin exhibbiting symptoms of severe autism due to arid intestine caused nutrient defficiencies. Once the intestines are made fertile again, the children go back to their normal modes of functioning, which is mild autism.

Alison Wrote:
Probiotics - are they the same little todgers you get in yoghurt?  Acidopholus and bifidus?  Or something else?  My whole family loves yoghurt, but Lauren and I are still AS!
Alison


Some of the stuff you get in yoghurt, i'm still slightly skeptical of taking a full range of probiotics in pill form.

There's a new kind of Yoghurt in America, called Activa that promotes that it has probiotics in it.
We have had Activia in the UK for quite some time. It's very popular here.

I wonder though, if you take probiotice for long enough, does your body become dependent on you eating them? Is that why you'd feel worse if you stopped taking them?

I've tried some probiotics, but they made me feel a bit unwell. I persisted with them for a month, because I thought they might take a little time to start working, but I still felt the same after a month, so I stopped taking it and felt better.
The theory is that you replenish the gut fauna with "good" bacteria in order to strengthen your immune system and help digest food. However, it's not impossible that you may also end up having a bad reaction to the stuff. I've been told from several sources that the sick feeling does go away after a few days but haven't tried it myself.
The article wa a load of hogwash. If the trial couldn't be completed properly, then no conclusions of any kind can be drawn from it, it's as simple as that. There are very good reasons why scientific trials of treatments or interventions need to be done strictly according to the best methodology. Any flaws can make any of the results of a trial meaningless.

If these autistic kids did in fact take a dose of probiotics, shouldn't the probiotics have a lasting effect? I thought that the whole point of probiotics is to infect the gut with a better class of bacteria, and infection should be a lasting effect. And if probiotics should have a lasting effect, shouldn't that make a crossover trial a completely inappropriate methodology to use for this trial???? I have a strong suspicion that this "trial" was really not much more than a marketing publicity stunt for a probiotic product.
I think it would be very helpful to promote breastfeeding for at least 6 months and possibly 12 or more. Breast milk provides babies with many immunity factors and helps develop their brain cells. This would be especially important for babies with autism although I realise it might not be possible to diagnose them as autistic until they are at the toddler stage.

Personally, I'm not sure about probiotics. Since more of them were added to some brands of yoghurt, I get an upset stomach if I eat these brands. They're certainly worth a try and probably do help some people, but I'd rather be able to eat yoghurt that doesn't give me pains in the tummy.
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