This Is MS Multiple Sclerosis Community: Knowledge & Support

Andrew,

This might sound nutty coming from me, and perhaps you really don't care about my thoughts on this, but you put up a question in a public forum and I feel inclined to reply ..... You are not wasting your time.

It's a baffling thing for me to say, I'm not going to put any time and effort into this inclined bed idea - at least not in the foreseeable future. Maybe one day, but seriously, not that I can see right now. Given that, why would I bother to post a reply???? Because I can see that you have put your heart and soul into this and you genuinely believe in it. Analogy: I may not want to come to your church, but I think it's a great thing that you have a religion you believe in deeply. Please keep strong in your belief.

So, your statement is alarming to me. I don't know if you like sports, but if the head coach of my favorite football team made a statement like that, I'd be alarmed. When we believe in our cause, we do not question our efforts. Andrew, you are important and relevant, however, I believe in a different religion and I'd hope we can respect each other for where we are on those paths.

So, lets be clear I'm not interested in the bed thing. I can tell you that I go to other boards and I share info about antibiotics and I am effectively ignored by most. You are not alone. I'm fine with that because, for me, the religion analogy holds. For me it's about sharing information and showing the support for it. We have to realize that there are hundreds of folks out here on the internet trying to convince folks with various conditions that all sorts of therapies are useful. My first bit of advice for you is to better understand the other therapies that are commonly being thought about. A post about accupuncture will get you more interest than the bed thing, it's all part of how folks think.

I used to think that I could just parachute into a forum and show how much better Kim was doing and dozens of folks would be aching to get more info from me. I doesn't work that way. You need to factor in the human element, you need to recognize the independence of each person you're trying to reach. They have on going lives, we are much like a disruptive advertisement in the middle of the sporting event.

I know you think you have something VERY important. I do too. So, we need to be persistent, but respectful. Firstly, repectful of our convictions. Interestingly enough if you compare the bed idea to the CCSVI or abx idea, you have a huge advantage in cost and ease of introduction. CCSVI is clearly hard to get and ABX, requires a prescription. But, your idea sounds pretty easy.

So, I'd propose you try something different. Take your idea on the road and start finding folks who want their beds adapted for free. Let them do the talking for you. Word of mouth is the very best way these ideas grow. The method you have now, isn't working so well. You might want to read the original business case of how the Post-it note became a huge success. Good Luck Andrew.
Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Thank you for your encouraging post.

If we could inspire a large number of people to tilt their beds and keep a diary as was the case in the pilot studies, it will not take long before results will begin to emerge.

Unlike a belief based system as metioned by Notasperfectasyou, Inclined therapy is evidence based. Right down to the simple tubular experiments with water at the Cliffs in Brixham where water flows vertically upwards to 24 metres. Hardly a belief is it?
http://www.thisisms.com/ftopic-quote-71373.html

In the original video showing john Cann walking, the multiple sclerosis resource centre implied it was a belief system also.

It is not a belief system but an evidence based paradigm that is very easy to test to see if Inclined Bed Therapy is having any effect. Simply put the bed down again and note any changes.

Contrary to what people may think about the posts and results over the years and indeed the results by Foreverspring right here on this thread, a distinct pattern emerges.

Furthermore when the inclined bed is used by people with COMPLETE spinal cord injury, they also report improvements and follow a similar pattern of recovery. How does placebo fit with spinal cord injury?
http://www.youtube.com/watch?v=H8oS-9dAU_M

If this were one case of significant recovery it would be amazing, two and it could be a conicidence but when 3 out of 3 the were first to try IBT shoed similar patterns of improvements it could hardly be considered as concidental. http://www.youtube.com/watch?v=H8oS-9dAU_M

Uploaded higher resolution videos on youtube.

Best

Andrew

Hi Ken

Thank you for taking the time to air your thoughts on this, very much appreciated.

Far from a belief it is more akin to a curse, devouring a huge amount of my time and an even greater amount of patience. Belief is irrelevant, I would love nothing more than to disprove Inclined Therapy and walk away from it!

Yes I have put my heart and soul into inclined therapy, not however because I believe in it but because it is a responsible thing to do with sound repeatable science, partly because I enjoy helping people and partly because of the huge burden of being a one man band and hoping some of those Acadimwits will get off their high self installed pedestal and repeat these simple experiments and confirm them as factual rather than pretending they never saw it or read it.

Take the photographs of varicose veins for example. There is zero chance of a placebo effect for these massive improvements. Yet surgery will commence for the majority and probably for some of the people who have seen the photographs and choose for whatever reason to ignore them.

And then there are those that say things like Inclined Bed Therapy does not relate to CCSVI and should be discussed elsewhere?
Well according to the literature our vascular network does not have separate independent systems. In fact every single vein is joined to an artery, so if a varicose vein improves the whole vascular system must have been affected by this therapy and that means the cerebrospinal veins and jugular veins have also been affected.

Perhaps this explains why a small group of people with multiple sclerosis reported to John and Jean Simkins of the Multiple Sclerosis Resource Centre MSRC for their independent “Raised Bed Survey” massive improvements using it, much the same as Foreverspring has now also reported massive improvements. Yet it appears to be easier to pretend this never happened for the majority of people and it is this stubbornness that I find so hard to deal with.


Yes I respect your views on your own regimen and can see from what you have written you have come across your own brick walls.

As for taking the Incline Bed on the Road, this is evidently not going to matter one iota to the medical profession who repeatedly ask for a controlled study and repeatedly back track on their words and fail to conduct one!







Andrew,

Andrew,
I think you are the right person to ask about this.
What is K regulation or K efflux?
Thanks much.
Terry

Sorry Terry can't help you with your subject.
Found this link that might be of interest.

http://ep.physoc.org/content/86/1/19.abstract

Lol, Andrew. That def sends me in the wrong direction- am more confused than ever! I need K efflux for dummies. Thanks, though! I appreciate your time.
Terry

My husband aka Andrew aka Hoodyup came home tonight mentioning Mr. Fletcher's idea or research. Frankly I'm sick of hearing about MS stuff...diet, CCVI and now this, but because Hoodyup means well and is my caregiver too I thought I'd at least take a foggy glance. I couldn't read all 10 pages of this thread and the replies to Mr. Fletcher due to poor eyesight because of MS. I did read the first page.

So here's the deal Mr Fletcher:

Your Poll question--I don't have vericose veins, haemorrhoid, or leg swelling

So does your theory work for a person with venous insufficency in the legs and feet? When I put my feet on the floor for more than a minute, the blood pools and does not return causing pain that becomes unbearable. I'm told by my general surgeon that it is the return valves that aren't working. I'm supposed to elevate my feet, walk, and wear compression hose. The last two I don't do. The only relief I do get is to get foot massages (courtesy of Hoodyup), elevating my feet and legs, and the little bit of leg and feet exercising I do in bed. BTW. I have a 8 mm lesion in the front of the left side of my brain and numerous smaller ones all over my brain.

I sleep at night with my feet elevated and my head is lower than my ankles but elevated also a little.

I am apprehensive about trying the feet flat with the head elevated because I'm afraid of the leg and feet pain that will most likely happen thus keeping me awake all night. I think pain is not good, so I keep my feet elevated. Today I spent three hours on the floor after falling off the bed and my feet ended up flat with my head elevated a little. That wasn't too comfortable and my legs and feet did turn purple and painful.

I am going to ask my general phycisian about this. He's very open-minded.

What are your opinions on this therapy and me?

I've promised Hoodyup to look into everything, so here I am.

Thank you..

HI

Thanks for sharing your thoughts.

First of all, oedema varicose veins, chronic venous insufficiency deep vein thrombosis, leg ulcer have all responded favourably to inclined therapy. So the answer to your question is yes it should work in your case providing you allow sufficient time.

Initially there may be some increased swelling as a shift of excess fluid moves to the lower extremities and this is a logical process dealing with the density of the fluids and the direction of gravity. But this is usually short term followed by a huge reduction in oedema as the pressure inside the veins drops due to the inclined bed. Once the venous pressure has been lowered the flow of excess fluids begin to be drawn back through the veins into the circulation and excreted in the urine. Even in the most severe cases of oedema this has been shown to be the case.

I would suggest that you begin with a 4 inch incline for a month raising by a further inch for 2-4 weeks and then the full incline.

Having the legs flat and the upper body raised will not work. Sleeping head down will cause you to lose muscle and bone density, develop diarrhoea and many more problems so must be avoided. Google: Head down tilt and NASA.

This simple therapy does much more than address venous inefficiency given enough time, particularly for people with multiple sclerosis. The first 2 weeks can be strange, cause increased discomfort and pain, even for people without a medical condition, yet the majority of people experience obvious improvements without discomfort.

If I were you, I would read more into this than the first page to make an informed decision and you will be able to understand why this has had such a profound effect on Foreverspring and many others with ms.

The trouble with Inclined therapy is that it sounds too simple to have any worth and of course it is free so can’t possibly be worth trying. But this is simply not the case. It does work and excels for people with neurological conditions.

But this will require a leap into the unknown to test the method so the question is are you comfortable to experiment with your bed angle?

http://www.youtube.com/watch?v=u3D7tBQfCxQ

Andrew

http://www.menieres-disease.ca/menieres ... assium.htm

This may be of more help then

http://vitamins-minerals.suite101.com/a ... um_balance

Thanks Andrew,
I actually sat with an article for 5 hours last night- 5 HOURS!!!. I don't have a "sciency" mind at all, so it took that long to sort of understand it. I appreciate your responses very much.
Terry

The results from the questions are very interesting so far.

It appears that a much higher than average proportion of people with ms have anomalies in the veins.

We could use some more input from people visiting the boards.

Please add your vote by checking the appropriate box.


You may also be interested in the photographs on the first page of this thread.

Andrew

Little things mean a lot.

ErikaSlovakia, in her Inclined Bed Therapy thread on the CCSVI forum, mentioned her relief from nausea after tilting her bed. Me, too!

I am now at 9+ months, and am still noting beneficial changes. At my age, when you are expecting only gradual bodily decline, it is so delightful to encounter improvements, even little ones!

My medical history over the last four decades or so has always included a statement like this:
---------------------------
Frequent nausea - almost chronic; usually mild, but not always.
Rare vomiting - seems odd, considering tendency to nausea. One occurrence in 1991, one in 1965; previous occurrences in childhood.
---------------------------
The cause of that nausea was never determined. Since it was (thankfully) only a mild nuisance, I determined to accept it as just a part of my being, and keep moving on. When you live with something like that for most of your life, it just becomes "background noise" and is seldom noticed -- much like my tinnitus. Because I also had other symptoms that accompany a lesion on the vagus nerve, I guessed that I might have a small lesion somewhere on that nerve.

Over the last few months, I had noted that the background nausea was no longer present, but did not connect its disappearance to the altered position of the bed until reading Erika’s comments -- an Aha! moment!

Another little change: I now find that I can thread my sewing needles more easily, because I can actually see the eye of the needle. For several prior years, that was not visible to me, and I would have to make several thrusts with the thread before it would find its own way through the hole. This makes sewing much more enjoyable.

Something strangely wonderful is happening with my memory, too, particularly with numbers. I started noticing this about a month ago in several incidents, and thought it peculiar.

For example, I was looking at a sewing pattern for infant clothing in a catalog in my local fabric shop, but it was out of stock there and I could not decide whether or not to order it. I decided to wait, and went home. A week later, I returned to the shop and told the owner that I would like to order it after all. She asked me the 4-digit number, and I told her and then said, “Wait, I had better go look it up.” I did so, and it was correct!

Another incident: A week ago, a woman I did not know telephoned me from out of state and left a message on my answering machine. It was about some important legal and financial business completely unrelated to me, and I realized that the message was intended for someone else. Since she had given her phone number, I telephoned her regarding the mistake. Thinking about the situation this morning, I can still remember her 10-digit phone number!

I do not know how this is happening, but I like it!

ForeverSpring

As mentioned earlier in this thread, with the use of the inclined bed, spasticity is no longer a problem for me. I have been wondering if it would return with the cold weather, because, in the past, it was more active at the lower temperatures. However, I am still not having those nasty spasms of my previous life.

I live at an elevation of about 8000 feet in the Rocky Mountains, and it is a cool place. In August we had frost several times during the month. It began to snow here on September 21. Temperatures have been gradually falling since then, even as low as -2 F. (-19C.). I try to get outside for a walk every day, unless the wind chill is intolerable. ( In that case, I turn to the mini-trampoline for exercise.)

Still no spasms!

ForeverSpring

Evidence that tilting a bed can alter the outcome with venous insufficiency, take a look at the photographs on the links provided.

Male age 34 varicose veins before and during sleeping on an inclined bed.

Before Inclined Therapy: http://s209.photobucket.com/albums/bb31 ... 4-calf.jpg

http://s209.photobucket.com/albums/bb31 ... 8-calf.jpg

Over 6 months we can clearly see the veins changing.

http://i321.photobucket.com/albums/nn36 ... -ibt-p.jpg


6 MONTHS LATER (Picture taken further away then 1st photograph) http://i321.photobucket.com/albums/nn36 ... -dec-3.jpg


http://i209.photobucket.com/albums/bb31 ... 3-2008.jpg

9 Months later:
http://i209.photobucket.com/albums/bb31 ... ghrest.jpg

If this is happening to the veins we can see it must be happening to the veins we can't see also. Is this why tilting the bed is working for people with multiple sclerosis?


Forum showing more pictures and comments.
http://www.thenakedscientists.com/forum ... c=9843.150

Foreverspring

Your reports are phenominal!

Thank you so much for coming back and letting everyone know what is happening.

The sight improvements are part of the package of improvements reported by people on two pilot studies. Here again on the third study we are producing the exact same pattern of recoveries.

This cannot be called a conicidence and the only reason it is called anecdotal evidence is because it is not wrapped up in a white coat.

More and more people thanks to this forum and your posts along with the posts from Erika, Terri and those that are just beginning the therapy will put forward a very strong case, raising questions as to how and why this simple safe alternative to surgery and drugs has been ignored by so many for so long.

Rest assured we will succeed in the end. The truth always prevails in the end.