J.K. Rowling

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: J.K. Rowling

Postby EJC » Fri Jan 20, 2012 3:12 pm

IBT could easily be included in the "natural approach" category.

Jaw misalingment could also be included there but I happen to feel it's irrevocably connected with CCSVI. Plus the footfall here far greater.
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Re: J.K. Rowling

Postby Cece » Fri Jan 20, 2012 4:30 pm

I would think either IBT or misalignment (encompassing jaw and atlas and spine) would make appropriate subforums here in the CCSVI forum. There is a big difference in talking about these issues from an MS autoimmune perspective and talking about them from a CCSVI perspective. And yet they're also different from CCSVI itself.
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Re: J.K. Rowling

Postby EJC » Fri Jan 20, 2012 4:49 pm

^agreed, I feel there's a connection between all three.

I'm not sure we need to subdivide though we can quite sensibly discuss them all here on their own threads.

I feel subdivison of medicine actually has something to answer for when it comes to problems like MS*, lets not subdivide our combined knowledge to the same degree!


* There is an advantage of taking a global overview of symptoms that we seem to have lost these days. We assume each symptom pigeon holes nicely into a specific specialsits area.
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Re: J.K. Rowling

Postby AndrewKFletcher » Sat Jan 21, 2012 2:46 am

Cece wrote:IBT is more of a medical management technique (to manage the problem without treating) and IRs have the skills to actually treat. I am not sure who would take on researching the use of inclined beds in MS patients. There is logic to the idea of inclining beds. If it were something that could be sold, perhaps it would have been funded and capitalized on already....


Cece, long before CCSVI was discovered people with ms where responding to tilting their beds. The results from the first and second-larger study show that IBT is much more than a management therapy. Management would indicate preventing / slowing progression. What we learned from the earlier study was that symptoms where reversed in most cases, to some degree. :http://www.inclinedbedtherapy.com/index.php?option=com_ninjaboard&view=forum&id=15&Itemid=30

I agree entirely that without a profit at the end of it, funding is unlikely unless someone like J.K. Rowling steps in.
One would think that a charity like the Multiple Sclerosis Resource Centre (MSRC) or the Multiple Sclerosis Society would have been interested in conducting a controlled study through their members.

John Simkins (MSRC) promised to help conduct this study but alas the charity felt they did not have sufficient funding. There could not be a lower cost initiative for a controlled study for pwms, yet charities will go out of their way to pour money into an expensive drug related magic bullet trial, which as yet have produced zip for pwms. The question is if people taking part in the study provide their own data and use standardised methods to tilt beds, how much would such a study cost?

That said, I am eternally grateful for the article in New Pathways.

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Re: J.K. Rowling

Postby EJC » Sat Jan 21, 2012 3:50 am

There is money in drugs, there is funding for where there is money at the end, it is basic economic principal.

There is no conspiracy to not try ideas that don't work, there's just no private funding. That won't ever change unfortunately.
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Re: J.K. Rowling

Postby AndrewKFletcher » Sat Jan 21, 2012 3:56 am

IBT is not an idea that don't work, it is a well thought out and proven therapy that has been shown to work for pwms!
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Re: J.K. Rowling

Postby EJC » Sat Jan 21, 2012 7:54 am

AndrewKFletcher wrote:IBT is not an idea that don't work, it is a well thought out and proven therapy that has been shown to work for pwms!


If it's proven why does it need a study?

Surely just tell people to lift their bed, if it helps great, if it doesn't it's not cost anything.

Why would need a study to tell us this?

I can understand requesting a study on medical procedures and the like but I'm not exactly sure what a study of IBT would promote, especially if it's already proven.
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Re: J.K. Rowling

Postby AndrewKFletcher » Sat Jan 21, 2012 11:04 am

I wish it where that simple, the majority of people will not try anything unless is has a medical stamp of approval and a quantifiable acknowledged study. How many people have read about IBT and not bothered to try it?
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Re: J.K. Rowling

Postby EJC » Sat Jan 21, 2012 3:35 pm

The problem with IBT is it can never be blind or double blind. You will always know if you're laying flat or not!

So how could you possibly produce a meaningful study and measure placebo? That's your biggets hurdle, the second biggest hurdle is then funding.
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Re: J.K. Rowling

Postby AndrewKFletcher » Sun Jan 22, 2012 2:37 am

Randomised controlled studies for Inclined Bed therapy can easily be achieved using the Crossover – over time, each participant receives (or does not receive) an intervention in a random sequence.

John Simkins Former (MSRC) Manager suggested a double crossover by adding a reverting back to flat bedrest. This is a method I also tested in the pilot study, though the vast majority of people refused to go back to horizontal bed rest.

Cluster – pre-existing groups of participants (e.g., villages, schools) are randomly selected to receive (or not receive) an intervention.

http://en.wikipedia.org/wiki/Randomized ... lled_trial

The placebo based trial is designed to identify very low levels of changes in a group of people, I.E. 2-3% IBT has been shown to be far more affective than this, so a sugar pill would not be necessary.

However, a placebo pill / supplement could be used if required for one group that sleep flat and the other group takes no pill but sleeps inclined.
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Re: J.K. Rowling

Postby EJC » Sun Jan 22, 2012 3:42 am

So why not set up a trial yourself with Mr Simkins? It seems you're very motivated to do so.

How would a trial work, would be done in a hospital under controlled conditions? Would it be done in patients homes with set size blocks under the head of each bed?

How does the age and type of mattress in each persons bed effect the sleep each person receives?

I'm not sure of the benefit of spending money on a trial, personally I feel you'd get a better result spending the same money on advertising the idea and getting people to try it.

"Lift your bed up 4" and see if you feel better"

Set up a website with a series of set questions to get feedback and there's your trial.

If it proves positive you're now armed with a huge amount of information to push for a fully controlled funded trial, without that you're going to be banging your head against the wall and not get anywhere.
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Re: J.K. Rowling

Postby Amir » Sun Jan 22, 2012 3:48 pm

EJC wrote:^agreed, I feel there's a connection between all three.

I'm not sure we need to subdivide though we can quite sensibly discuss them all here on their own threads.

I feel subdivison of medicine actually has something to answer for when it comes to problems like MS*, lets not subdivide our combined knowledge to the same degree!


* There is an advantage of taking a global overview of symptoms that we seem to have lost these days. We assume each symptom pigeon holes nicely into a specific specialsits area.


The divisions of medical training and practice subdivides the human body into many component parts. It further tries to pigeon-hole every ailment into further smaller bits creating specialists in every field. This has been going on since pharonic times with little change over the centuries. My worry is best described by quoting the following:
“Ever increasing specialisation is clearly leading to a fragmentation of knowledge. People today have so much information and so little grasp of its origins, meanings, and uses that overall comprehension has frayed beyond repair. Even as specialised knowledge increases, communication between fields decreases. Within fields experts address larger and larger problems in smaller bits. Modern society faces a dark age in the midst of intellectual plenty, a paradox that can be resolved only by reintegrating knowledge in new ways”. *

And medicine needs the most integration. We are one whole being. We are compact. We need one holistic approach!

*Robert and Michelle Root-Bernstein. Preface to “ Sparks of Genius”
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Re: J.K. Rowling

Postby AndrewKFletcher » Tue Jan 24, 2012 12:54 pm

Mr Simkins retired a few years ago

The trial would involve people using IBT at home and monitoring their own progress with regular check ups that would coincide with routine appointments.

A good point about the quality of mattresses, something that would require some consideration, and possibly a trial eligibility criteria that would involve the person considering the trial to replace a poor quality mattress.



Regarding spending money on advertising, this is something I could not afford. Though have achieved a reasonable amount of free publicity in papers, magazines and television. The problem here is still feedback. Involving the medical profession would improve this problem.

The website is already in place with a forum for this purpose, though poorly attended. http://inclinedbedtherapy.com

I believe we already have a huge amount of information and reports from people, including before and after photographs of chronic venous insufficiency (varicose veins) improvements.

As for banging my head against a wall, one gets used to it over 17 years.
EJC wrote:So why not set up a trial yourself with Mr Simkins? It seems you're very motivated to do so.
How would a trial work, would be done in a hospital under controlled conditions? Would it be done in patients homes with set size blocks under the head of each bed?

How does the age and type of mattress in each persons bed effect the sleep each person receives?

I'm not sure of the benefit of spending money on a trial, personally I feel you'd get a better result spending the same money on advertising the idea and getting people to try it.

"Lift your bed up 4" and see if you feel better"

Set up a website with a series of set questions to get feedback and there's your trial.

If it proves positive you're now armed with a huge amount of information to push for a fully controlled funded trial, without that you're going to be banging your head against the wall and not get anywhere.
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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Re: J.K. Rowling

Postby AndrewKFletcher » Tue Jan 24, 2012 1:00 pm

EJC and Amir I agree wholeheartedly with your posts on subdivision
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