A Postural Connection With MS? Please Answer Poll Questions

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

When are you most likely to notice a significant relapse /new symptom (RRms) or general deterioration / worsening of symptoms /new symptom (PPms)

Morning after sitting too long (Sitting)
16
15%
During or After using a wheelchair (Sitting)
6
6%
During the night while sleeping / trying to sleep (Horizontal)
6
6%
During or after standing (Upright)
5
5%
At night while trying to get out of bed (Horizontal)
1
1%
After or during Walking (Upright)
11
10%
Following a journey while sitting (Sitting)
12
11%
In the morning on waking (Horizontal)
23
22%
In the evening while resting (Sitting)
8
8%
Rising from bed in the morning (Horizontal)
18
17%
 
Total votes : 106

Bias in Survey

Postby MarkW » Mon Jan 18, 2010 5:02 am

Hello Andrew,
Inclined bed theory should be investigated more but as your questions lead people to give one of your answers, it is considered biased. A 'none of the above' is essential in any survey. Also you need different questions according the stage/duration of MS (RRMS/SPMS/PPMS/0-5y/5-10y/10+y).

Inclined bed theory should be a different topic from CCSVI on thisisMS. Unless you are claiming that an inclined bed will reverse CCSVI, which I don't think you are.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Bias in Survey

Postby AndrewKFletcher » Mon Jan 18, 2010 6:50 am

MarkW wrote:Hello Andrew,
Inclined bed theory should be investigated more but as your questions lead people to give one of your answers, it is considered biased. A 'none of the above' is essential in any survey. Also you need different questions according the stage/duration of MS (RRMS/SPMS/PPMS/0-5y/5-10y/10+y).

Inclined bed theory should be a different topic from CCSVI on thisisMS. Unless you are claiming that an inclined bed will reverse CCSVI, which I don't think you are.

Kind regards,
MarkW


Hi Mark

Thank you for your useful comments.

Please do set up a poll with whatever questions you like and see if the results come out differently. Whichever questions you choose will inevitably be biased also to someone.

Regarding trying to move Inclined Therapy from the CCSVI part of the forum because you "don't think an inclined bed can reverse a swollen twisted vein, when the contrary in varicose veins has already been shown to be correct, leaves me considering you as being biased towards a surgical procedure?

But here is the twist for you and Dr Zamboni et al.

MS is reversible without surgery for CCSVI! Which acording to 16 years of research and results like those from Foreverspring and many others reporting significant improvements right here in the CCSVI forum and the General forum, is fully repeatable and therefore correct! Where does this leave the CCSVI Theory?

To ignore these results as a fluke has been tried too many times. But fortunately the Internet has grown in both size and participation.

People power and truth are all that is required. No longer are independent researchers held in check by convenient biased constraints.

If you want to find out whether I.T. should be hushed away to some quiet convenient corner of the form, why not ask everyone who is using I.T. to see if they all agree with you?
It would be very prudent for Zamboni et al to take on board what is happening here. Failure to do so will inevitably cause problems in the future for any publications.

Varicose veins and Chronic Venous Insufficiency have already been shown to recover using I.T.! Where is the seperation that prevents CCSVI from responding in the same manner?

And what about that myelin problem? Has that suddenly become irrelevant and inconvenient because of CCSVI? Many people don't think so! And neither do I!

Kind Regards

Andrew K Fletcher
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Bias is important

Postby MarkW » Mon Jan 18, 2010 7:13 am

Hello Andrew,

You seem to agree that there is bias in your survey. I am just pointing out that, in dealing with such surveys, most scientists will trash and ignore your findings.

You appear to say that CCSVI may be reversed by Inclined Bed Therapy. To accept this I would expect to be given Doppler/MRV data before using a raised bed. Repeated after 4 or 8 or 12 weeks showing no CCSVI. Is such data available ? Maybe a bed manufacturer would sponsor this research.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby AndrewKFletcher » Mon Jan 18, 2010 8:44 am

Hi Mark

The last thing a bed manufacturer wants is someone to point out that their flat beds, which they depend upon for an income can be shown to be causing considerable harm.

As for bias in my survey and most scientists opinions.

Show me where I have a question relating to sleeping on an inclined bed?

As for none of the above as an answer. Is there any posture I have omitted that would allow a person a method of avoiding the questions?

Hanging upside down from the rafters perhaps?
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Postby Vonna » Mon Jan 18, 2010 9:58 am

vonna

Your experience using the mouse lends me to ask was your keyboard higher than your elbows?

Your walking symptoms, is this fatigue you feel? Or are there any neurological symptoms like spasm, loss of sensation, or function?

Or are these symptoms while standing shooting stabbing pains, tingling, pins and needles?

andrew


Yes, I would imagine the keyboard was higher than my elbows.

A day at six flags caused tingling in my lower legs and within a few days, loss of sensation in both legs, all the way up my ribs. Plus, a very sensitive spot on my left side, below my heart. This spot was sensitive to the touch on both my front side and on the back. There was no outward indication (no swelling, redness, etc.) The spot grew more painful every day, and my legs and all the way up to my ribs lost more and more sensation. The spot on my ribs felt like a knot under the skin. It grew bigger and more painful each day. Within two weeks, I was on steroids, and eventually in the emergency room. Along with the other symptoms, I was having great neck and back pain.

My neuro. insisted that this had nothing whatsoever to do with six flags.

After 6 weeks, the sensation came back. However, even when I walked down the hall in our house, my legs would start tingling. The more I walked, the more they tingled. 18 months later, I started LDN, the tingling got better within the first few days. Yet, I still feel the tingling if I walk a block or so.

An interesting note: The last three weeks, I am having pronounced symptoms and trying to avoid a major attack. Last night, I felt an "itchy" spot on my right leg, above my ankle. It was irritating, but I couldn't see anything wrong just looking at it. When I felt it, there was a knot, and warmth. The knot was larger than the size of a half dollar. It resembled very much the knot I had had on my ribs (which has begun to itch and be irritated again, but no knot). I hope I am not totally confusing you, as for me this is very significant. Anyway, the knot on my leg came up very quickly, and I felt myself wanting to scratch it constantly. When I got up to walk, my legs felt stiff. A stiffness I had never felt before.

At this point, I wrapped a thick, hot, heating pad around my leg where the knot was. Within three minutes, the knot was gone!!!

In my unlearned mind, I felt like the knot was something to do with circulation issues. Possibly a clot, although my symptoms don't fit this perfectly. Whatever it was, the heat immediately relieved it, this I know for sure!

Hopefully I am not way off topic here, as I am speaking of circulation issues.
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Re: Bias in Survey

Postby Cece » Mon Jan 18, 2010 10:19 am

MarkW wrote:Inclined bed theory should be a different topic from CCSVI on thisisMS.


Maybe a poll could be set up asking if Inclined Bed Therapy should stay in this forum or be elsewhere, as was done for chelation recently?

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Postby Asia » Mon Jan 18, 2010 12:15 pm

green - I have heard of this. A friend of mine who was a user was advocating marijuana strongly, but I was too much of a coward to try so I can't tell for myself.
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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Good advice from an MS Charity on posture?

Postby AndrewKFletcher » Wed Jan 20, 2010 4:05 am

http://www.mstrust.org.uk/downloads/tips.pdf

Tips & Advice...
• Try to ensure that you get enough sleep - take naps during
the day if necessary. Give yourself permission to rest and put
your feet up whenever possible
• When you feel tired or worn out, stop what you are doing
and have a rest before you start again - pace yourself
• Don't stand when you can sit down, and don't sit down
when you can lie down
• Be aware of your physical limitations and listen to your body
when it tells you to stop
• You might find that relaxation tapes and gentle music help
you to wind down
• If you know that you have a big event coming up that might
tire you out, make sure that you prepare for it, by getting as
much rest as possible beforehand


How many people with ms have read this harmful information and followed the advice only to find they have deteriorated rapidly?

:roll:
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Postby shye » Wed Jan 20, 2010 7:11 pm

If we start a poll, I for one vote that Inclined Bed Therapy stays!
I posted under the I/Bed thread, and will continue to do so-- it has already (1 1/2 months) helped me considerably.
I see the links immediately between the CCSVI theory and Inclined Bed Theory. (As I do also with chiropractic Atlas adjustment).

And yes, I wish I had a MVR or Doppler pre-

I think that is a good suggestion, but how many of us have the time, energy and resources to get that done first? This theory presented itself as an option to me, and I took it.

Andrew, possibly you could start a thread asking for those to participate who WOULD run tests first, before starting the Inclined Bed Therapy? And then after, at some set point?
Certainly would quiet critics, and would be a fascinating study.
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Postby Cece » Wed Jan 20, 2010 7:17 pm

Just to note, I am trying Inclined Bed therapy too. So far I'd say it's mildly beneficial for me.
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Doplar tests and Inclined Therapy

Postby AndrewKFletcher » Thu Jan 21, 2010 3:58 am

shye wrote:If we start a poll, I for one vote that Inclined Bed Therapy stays!
I posted under the I/Bed thread, and will continue to do so-- it has already (1 1/2 months) helped me considerably.
I see the links immediately between the CCSVI theory and Inclined Bed Theory. (As I do also with chiropractic Atlas adjustment).

And yes, I wish I had a MVR or Doppler pre-

I think that is a good suggestion, but how many of us have the time, energy and resources to get that done first? This theory presented itself as an option to me, and I took it.

Andrew, possibly you could start a thread asking for those to participate who WOULD run tests first, before starting the Inclined Bed Therapy? And then after, at some set point?
Certainly would quiet critics, and would be a fascinating study.




Shye

This is a good idea, especially considering many have already been tested but have not yet had an operation to insert a stent or angioplasty to stretch the veins.

And some of these people are already sleeping on an Inclined Bed.

After a period of 4 months, it would certainly be worth having another Doppler Test to determine if there are changes in the veins compared to the benchmark test before I.T.

I suspect there will be changes, as is already proven in varicose veins.

However, due to the huge amount of people now experiencing symptom relief from I.T. if there are no improvements observed in the constricted and twisted veins where does this leave us with the CCSVI theory and therapy?

Another problem that most people are not addressing is the cause of the CCSVI. What could have constricted and twisted the vessels?

Many people do not experience ms symptoms in childhood. This lends a question about considering a hereditary cause of CCSVI. If this were the case, the abnormal vessels should be evident from birth, they are after all soft walled vessels so are governed by pressure changes, so what is inflating and deflating them and causing them to twist?

Posture is certainly a viable candidate!

Andrew
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Postby oryx » Thu Jan 21, 2010 6:06 am

Andrew said : Posture is certainly a viable candidate!

I agree with Andrew. I have a horrible posture.. infact a forward neck position last 2 years. In my first years of work, I spent nearly 24 hours sitting in front of the computer, sometimes without break, ignoring my body telling to relax. AND I used to lie in bed straight flat, without even a pillow. Now I have big trouble lying in bed, and bigger TROUBLE, MS.
I do think Andrew has a point there, but I still need to test the IT. After what does it cost ? Next to nothing. Does it involve steriods ? No. Does it involve freaking up my immune system ? No.

I'm going to give it a try.
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Postby tracy89 » Thu Jan 21, 2010 6:50 am

hi i found out i had ms in 2005 and my ms has got worse. i find it hurts more when i walk and sit in a wheelchair for to long. i also get tired on long jouneys too. i have been getting alot of cramp in my feet and carf muscle. i can't use a walking stick as i also have carpal tunnel in both of my wrists and i have virtigo too. i found out lastyear that i have ostio arthritis in my hips and left shoulder and surfer a stiff neck too. it is interesting to red what you have found out. i have just had a new bed and it is low wooden bed and i struggle to get out of it. think i will have to save up for a new one that is more raised. thankyou for your texting me and look forward to more info :)
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Postby shye » Thu Jan 21, 2010 6:56 am

Andrew,

This report might interest you, re: harm from non-activity:
http://www.bloomberg.com/apps/news?pid= ... Xovl_vpFZQ
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Postby shye » Thu Jan 21, 2010 7:06 am

Andrew wrote:
However, due to the huge amount of people now experiencing symptom relief from I.T. if there are no improvements observed in the constricted and twisted veins where does this leave us with the CCSVI theory and therapy?


But Andrew this would be of great help to know this when trying to decide whether to get CCSVI liberation therapy--

Both I/Bed and CCSVI liberation could exist as "curing" different aspects of MS, or just touch on overlapping aspects of MS--
that is, each could exist separately as a healing mode.
Proving your therapy heals the twists is not your aim, but if it does do this, all the better to know this (although I imagine this is not the mechanism of I/Bed)--but if I/Bed does not correct the twists, yet heals, eureka. Certainly a much easier and non-invasive therapy! which heals other aspects of body also.
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