Neurofeedback and autism

www.ncbi.nlm.nih.gov/.../

http://hypermobility.org/

What is hypermobility? What are the symptoms?

@electra that's really interesting.  I do believe autism is a whole body condition.  I have signs of hypermobility, my youngest daughter has a diagnosis of hypermobility and my other daughter has visible signs of it too (we're all on the spectrum).  Are you able to point me in the direction of your hypermobility research?

Not wishing to hijack your thread IntenseWorld, but I have found found online scientific papers to be of use with my daily life. Specifically research which shows that joint hypermobility causes biofeedback which is interpreted as anxiety by the body. Massive help in understanding why I panic when beginning to exercise and not something I could have got from a book or my GP. Reading papers has helped me pull together research and understand autism as a whole-body thing and not something which affects the brain and stops at the neck.

Not wishing to hijack your thread IntenseWorld, but I have found found online scientific papers to be of use with my daily life. Specifically research which shows that joint hypermobility causes biofeedback which is interpreted as anxiety by the body. Massive help in understanding why I panic when beginning to exercise and not something I could have got from a book or my GP. Reading papers has helped me pull together research and understand autism as a whole-body thing and not something which affects the brain and stops at the neck.

Not everything online is unreliable, which is an extremely black and white line of reasoning. As with everything in life, you check your sources!

Regarding on line sources, there is a lot of material on the web that isn't appropriate, including privately created sites, tongue-in-cheek science take offs, young people's information sites that schools wouldn't approve of, but which the market enables to thrive....

Some academic papers are available on the web, some because they are more than a certain number of years old, or an agreement has been reached for release of newer papers, or the publishing organisation has decided on line open access is best for them.  For example Autism Research Centre ARC papers are mostly freely accessible on line - but what's the point as the subject matter won't help individuals on the spectrum with their daily lives.

Most journals unfortunately, or at least papers within recent years, you have to pay for to access. Unless you are at a university or research institute that pays the licenses for greater access, where a lot is freely available. Since I retired accessing journals has been a nightmare.

The validity depends on the journal, one of good international quality will be as reliable as getting it on paper.

However getting journals on paper now is incredibly difficult. Many libraries have disposed of their journal back copies in favour of electronic storage, and some journals now are electronic only. You would have to travel long distances to access hard copy journals now, and many Americamn or Australian jornals aren't available here as hard copy.

Government and research institute reports are best accessed on line now, as the cost of buying Government reports hard copy is astronomical.

So where we get this idea that nothing on line is reliable comes from I do not know, because nowadays academics have little choice but to go on line.

[rolls eyes]

1) I have NOT stated anywhere that the NHS should offer neurofeedback.

2) This thread, is not, I repeat, not about vaccines or thimerosal

Used to work in the NHS...used to being the operative phrase.

IntenseWorld said:

You are missing the entire point of what I said.

This thread is specifically about neurofeedback, not vaccines.  Evidence/information is relevant to people it's not about what's included or not in vaccines in any one country (and thimerosal is not the only additive people need to be wary of).  The information was not inaccurate.  It was given so that people learn to gain an open-mind and not automatically believe everything the authorities tell them.  However, this is totally irrelevant in this particular thread.  You clearly have an axe to grind - and you're not grinding it on me.

I haven't asked why the NHS are not funding it, again you have misunderstood.  I have asked why they specifically advise against it when there is no proof it doesn't work (or is harmful) any more than there is proof that it does.

I have not advocated anyone pay for anything.  I have merely asked a question.  Which you are clearly not qualified to answer and digress from.

When you have found and read all the research, then you can come back and pick holes in it as to whether it is self-funded, peer reviewed or whatever - instead of merely speculating and offering supposition in argument.

This article states that Neurofeedback has been researched on and off since the 1960s and there is still no scientific consensus as to whether it works or has any benefit whatsoever!  Research is still continuing...

www.theverge.com/.../can-you-train-your-brain-to-heal-your-health

...Until there are conclusive, peer-reviewed, evidence based results from respected medical institutions, based on licensed ethical clinical trials, the NHS will not be offering Neurofeedback treatment any time soon!

The NHS is not offering it because there is no medical evidence-base to prove conclusively that it does work or has any benefit to Autistic patients, or any patients for that matter!

(And Thiomersal is NOT used as a additive in UK routine childhood immunisation programmes and it is NOT included in the MMR vaccine.  Therefore, posting links to an American website, i.e. the Centres for Disease Control or CDC for short, on a British forum does give a false impression that Thiomersal is included in childhood vaccines.)

******

(For the record, I work for the NHS in a Public Health role, I used to work at a NHS psychiatric hospital, and I have diagnosed autism myself.)

You are missing the entire point of what I said.

This thread is specifically about neurofeedback, not vaccines.  Evidence/information is relevant to people it's not about what's included or not in vaccines in any one country (and thimerosal is not the only additive people need to be wary of).  The information was not inaccurate.  It was given so that people learn to gain an open-mind and not automatically believe everything the authorities tell them.  However, this is totally irrelevant in this particular thread.  You clearly have an axe to grind - and you're not grinding it on me.

I haven't asked why the NHS are not funding it, again you have misunderstood.  I have asked why they specifically advise against it when there is no proof it doesn't work (or is harmful) any more than there is proof that it does.

I have not advocated anyone pay for anything.  I have merely asked a question.  Which you are clearly not qualified to answer and digress from.

When you have found and read all the research, then you can come back and pick holes in it as to whether it is self-funded, peer reviewed or whatever - instead of merely speculating and offering supposition in argument.

IntenseWorld said:

The scientific research is out there on neurofeedback already, as you will see if you do a search.  Therefore you are mistaken if you label it quackery without reading further.

Wikipedia is not a reliable source, it can be edited by all and sundry and is prone to bias.

I was asking only about neurofeedback not chelation or vaccination, as I think my post clearly illustrates.

This article states that Neurofeedback has been researched on and off since the 1960s and there is still no scientific consensus as to whether it works or has any benefit whatsoever.  Research is still continuing.  

Until there are conclusive, peer-reviewed, evidence based results from respected medical institutions, based on licensed ethical clinical trials, the NHS will not be offering Neurofeedback treatment any time soon...

www.theverge.com/.../can-you-train-your-brain-to-heal-your-health

IntenseWorld said:

The scientific research is out there on neurofeedback already, as you will see if you do a search.  Therefore you are mistaken if you label it quackery without reading further.

Wikipedia is not a reliable source, it can be edited by all and sundry and is prone to bias.

I was asking only about neurofeedback not chelation or vaccination, as I think my post clearly illustrates.

Read this before paying $100s for neurofeedback therapy

www.psychologytoday.com/.../read-paying-100s-neurofeedback-therapy-0

jad.sagepub.com/.../410.short

www.ncbi.nlm.nih.gov/.../

ajp.psychiatryonline.org/article.aspx

longman said:

Wikipedia is trying to overcome this perception though, but not before time.

The problem with wikipedia is that it is a popular public domain where people are asked to contribute - a bit like reality TV in a way - and even more reputable websites are now allowing popular voice and independent opinions to be added to their knowledge.

I spent years telling students not to use it, but gave up on the warning and conceded use it to find a way in, then check their sources and find more reliable evidence, and don't use wikipedia directly in an assignment.

Quite a few universities were engaged in trying to catch wikipedia out, despite their claims they checked public contributions. I know of at least one spoof scientific entry that lasted four or five years before wikipedia spotted the hoax.

But they are now trying harder. I'd still be cautious about wikipedia but the wikipedia isn't reliable story is already entering mythology.

I'd be cautious about practically anything on the Internet!  

I do wonder whether people research on the Internet, very obscure medical papers that back up their own biased theories, rather than peer-reviewed, evidence based, clinical trail tested, etc, medical research.

IntenseWorld said:

The scientific research is out there on neurofeedback already, as you will see if you do a search.  Therefore you are mistaken if you label it quackery without reading further.

Wikipedia is not a reliable source, it can be edited by all and sundry and is prone to bias.

I was asking only about neurofeedback not chelation or vaccination, as I think my post clearly illustrates.

And neither is the Internet per se a reliable source either!  Just because there are so called research papers out there means very little!  A lot may be self published.  A lot may have involved so little test subjects (under 10, for instance) as to be unreliable.  And the more scientific ones will often say that more research is needed.  

It takes years of scientific research and licensed ethical clinical trials, published evidence based peer-reviewed research in industry standard medical journals, agreement amongst leading medically qualified experts, etc, before any new treatment can be given the green light.  

(By the way, you have previously posted inaccurate information on childhood vaccines, which I countered previously.  For instance, you posted links about Thiomersal from the CDC website, despite the fact that Thiomersal is NOT in any routine childhood vaccinations in the UK and has NEVER been included in the MMR vaccination!  So my posting about vaccination is relevant, in my opinion.)

longman said:

I know of at least one spoof scientific entry that lasted four or five years before wikipedia spotted the hoax.

Love it.

Wikipedia is trying to overcome this perception though, but not before time.

The problem with wikipedia is that it is a popular public domain where people are asked to contribute - a bit like reality TV in a way - and even more reputable websites are now allowing popular voice and independent opinions to be added to their knowledge.

I spent years telling students not to use it, but gave up on the warning and conceded use it to find a way in, then check their sources and find more reliable evidence, and don't use wikipedia directly in an assignment.

Quite a few universities were engaged in trying to catch wikipedia out, despite their claims they checked public contributions. I know of at least one spoof scientific entry that lasted four or five years before wikipedia spotted the hoax.

But they are now trying harder. I'd still be cautious about wikipedia but the wikipedia isn't reliable story is already entering mythology.

The scientific research is out there on neurofeedback already, as you will see if you do a search.  Therefore you are mistaken if you label it quackery without reading further.

Wikipedia is not a reliable source, it can be edited by all and sundry and is prone to bias.

I was asking only about neurofeedback not chelation or vaccination, as I think my post clearly illustrates.

IntenseWorld said:

Just wondered why the NHS is advising against Neurofeedback when there are research articles saying it is very beneficial to autistic people?

http://publications.nice.org.uk/autism-cg170?utm_source=Linx+295+-+12+September&utm_campaign=linx295&utm_medium=email

http://hal.archives-ouvertes.fr/docs/00/29/72/94/PDF/Kouijzer_et_al_2008_Auth.pdf (for instance).

I would have thought if it was a question of cost it wouldn't mention it at all as not many people have heard of neurofeedback and to my knowledge it's not even available on the NHS.  It appears to be listed along with potentially harmful therapies such as chelation.  Just wondered why.

Medical treatments have to undergo years of research, experimentation and licensed ethical clinical trials, peer-reviewed medical papers, discussion amongst other experts in the field, etc, before it can be even green-lighted.  

There is simply not enough scientific evidence to prove a real long-term benefit.  Quack medicine, in other words.

en.wikipedia.org/.../Neurofeedback

Also of an interest...

www.skepdic.com/chelate.html

www.skepdic.com/antivaccination.html