2nd Multiple Sclerosis Inclined Bed Therapy IBT Pilot Study Results

Spinal injury,Saturday 14-Aug-1999 07:03:47,195.8.84.175 writes,EFFECT
OF RAISED BED ON SPINAL CORD INJURY
In 1990 I had two slipped discs and had a lamenectomy but ended up
unable to walk. I was lucky enough to get a bed at ROOKWOOD Hospital
a place that I cannot thank or speak highly enough of they gave me
back the will to live.
After two years all the slow progress stopped as I had been told to
expect. I had no feeling from the hips down and no movement of the
legs at all luckily my arms were o.k so transfers to the wheelchair
were more of a throw which usually ended with my coccis hitting the
wheel but as there was no feeling it did'nt bother me too much.
After a few months came the most horrendous phantom pains like a knife
attached to the mains that struck anywhere in the legs or feet for
this I was on strong painkillers or if it was too bad injections.
About two years ago a cutting from a paper was sent to me it was
about Andrew Fletchers raised bed I rang Andrew and he explained his
theory and told me how to raise the bed the bed was raised eight
inches that day when I saw the bed it looked impossible not to end up
on the floor at the foot however that night was wonderful the phantom
pains stopped and I had a full nights sleep slowly things started to
improve such as instead of having to grab my sock or trouser leg to
lift my legs onto the bed I could lean back and swing them up muscles
in my thighs started to twitch turning over in bed was possible
without having to grab the side of the bed and pull myself over not
having to pull my legs over by hand so many improvements that creep
up and are not noticed until days later.
Pains started again and I thought here we go again but it was soon
obvious that it was nerve regeneration pains as although they felt
like the previous pains these stayed in the same place anything from
six to twenty four hours but then the next time it was further down
the leg now I am glad to say those pains have gone the last ones were
in the toes. The present pains are in the feet again but generated
from the nerve that runs under the buttocks now the feeling has come
back to that area it makes sitting in the wheelchair most
uncomfortable but that is the next problem to get over but I will.
Now what I would like to say is if you have a problem try it stick
with it and most of all have faith in it it has worked for me and
when I walk again first I will thank Andrew and secondly I will let
everyone that reads this web page know.
John Cann honicombe ,John Cann,honico...@clara.net

Just getting started,Monday 30-Aug-1999 09:00:26,216.189.45.104
writes,I Just started on 8/27 had my bed raised by using two cinder
blocks under the frame at the head of my bed this works good and very
stable. I have ms for 9 years and am in a wheelchair I have swollen
feet and ankles and also have a thyroid condition. I have no change yet
and hope to see improvement soon. ,Nancy,purpl...@cetlink.net

Re: Just getting started,Monday 30-Aug-1999 23:56:33,212.1.128.62
writes,Welcome on board Nancy and everyone who has recently joined.
Be patient as I am sure you will see some improvements soon.
The study is still open to everyone who wants to join and costs
nothing. I will not refuse to help anyone who asks for the information.
The study is not a totally free study as payment is expected in the
form of a few words when changes are noticed either bad or good.
That's the only cost to everyone who sends for the information and I
will ensure that I will endeavour to provide this information for as
long as it takes to prove that our bodies require gravity to run
through our bodies fluids from head to toe twenty four hours a day
instead of being interrupted by incorrect sitting and sleeping posture.
Hang in there everyone
Kind regards
Andrew

Dear Mr Cardy
Thank you for responding to the people who took time to write to you
many of whom I am sure would be trying this therapy and participating
in this important study.
I will forward your letter to the people on my mailing list and hope
that this will satisfy their need to understand the MS Societies
position on the inclined bed therapy.
You say that neither you nor the MS Society are opposed to this therapy
yet you have done nothing to see whether it works or not and I find
this hard to accept given the fact that the pilot study reported by
John Simkins stated in 1997 that this should be investigated further.
If you doubt the validity of my work then challenge it and conduct an
independent study or help me to compile the statistics from this one.
Incidentally the study that is running and proving highly effective is
proof that it is not impossible to conduct a study and also proof that
studies do not have to cost millions of pounds.
Your comments that it is practically impossible to conduct a trial of
something that is thought to work with a whole range of unrelated
conditions raises some important considerations. For instance did you
know that most drugs used in veterinary practice are exactly the same
as those used for us? Or that many medicines are used to treat multiple
conditions and that many conditions are treated with multiple drugs.
Also you say unrelated conditions in your letter. This strikes to the
very heart of my success because I say that these conditions all have
a common denominator which I believe relates to the circulation of
bodily fluids and posture in relation to the effects of evaporation and
gravity on said circulation. I would be delighted to show you my
working models which show irrefutable evidence for gravity driven
circulation or you could ask Ruth Carlisle's opinion of the validity
of the demonstration which she witnessed at the MS Society in Effie
Road.
Several physiotherapists and no less than five neurologists-one of whom
now sleeps inclined have shown a great deal of interest and
understanding in the scientific logic behind the inclined bed.
Your comments of "If something starts to suggest convincingly that
there is a specific effect for MS then we may be able to do something
leaves me somewhat confused. Do you not see the reports on the message
board did you not read John Simkins report or are you saying that you
are now prepared to have someone examine the data from the study? Or
are you saying that all of the evidence we have already collated is of
little interest to the MS Society. Please clarify.
Please don't make the mistake of thinking that the messages on the
message board tell the whole picture. If everyone posted their reports
on the message board the MS Society would have to act! The study is
currently showing evidence of long term progressive MS Reversal! "as
anticipated by pilot study results."
I ask you again to assist with this study and to put aside any personal
feelings about either me or my work.
Sincerely
Andrew K Fletcher
,Andrew,Grav...@currantbun.com

The Mutliple Sclerosis Society Of Great Britain and Northern Ireland
27th August 1999
Dear Andrew
Thank you for letting me know about your web-site and for the
suggestion that we might meet.
I would not want to drag you to all the way to London for a meeting
without some clear purpose and at the moment I cannot see what it
would be. I have read all of the material on your web-site and it does
not seem to add more to what you had previously circulated. We are not
likely to support a trial for several reasons. The first is that you
are proposing an intervention that is not specific to MS or any other
condition and without some clear rationale for why it might work for
MS it would be impossible to conduct a meaningful trial. Secondly
given the rather hostile approach you have taken to the Society in
communications with me and with the media it would be difficult to
envisage working together satisfactorily. Thirdly you seem to be
selling beds and it is nearly impossible to conduct dispassionate work
with someone who has a vested interest of that kind.
I have no reason to doubt your assertion that some people with MS feel
better as a result of sleeping in a new position but the evidence
even from the statistics you provided is very thin and
questionable-and as you know people with MS benefit from all sorts
of interventions even placebo.
I wander whether your theory about transport of fluids in the body is
barking up the right tree and whether there might be a much more
obvious mechanical explanation?
With every good wish.
Yours sincerely
Peter Cardy
Chief Executive
CC: Dr Lorna Layward David Harrison
Ref: H:Fletcher-27.8.99.doc
25 Effie Road London SW6 1EE
Tel 0171 610 7171 FAX 0171 736 9861
MS National Help line: Free phone 0808 800 8000
Email: i...@mssociety.org.uk Web-site: www.mssociety.org.uk
Chairman: Sara Phillips Hon Treasurer: Maurine Dickson Medical
Advisor: Professor Alan Thompson
Registered Charity 207495

MS Society response to request for practical assistance with this
study.,Saturday 4-Sep-1999 11:32:44,212.1.154.123 writes,I called
Peter cardy and asked if he could locate someone who would be
interested in helping us to compile the results of this study in a way
that would be OK for the medical profession. I also told him that I
would somehow raise the money to pay for professional help and assured
Peter that there would be no cost to the MS Society. In order to gain
some professional interest I invited him to visit our message board to
hear what a few people are saying about their experiences so far.
His reply came as no surprise to me and to be honest I thought that he
would have a carefully structured excuse for not wanting to help people
with multiple sclerosis. After all we are talking about a couple of six
inch blocks under the bed and for the life of me I can't see why
anyone would not give it a try.
Perhaps you might want to send The Chief Executive of the MS Society a
letter via snail mail and or email and ask him why he and his
associates are turning a blind eye to such a simple but very effective
therapy against multiple sclerosis and many other medical conditions.
The last paragraph in his letter brought a smile to my face and in the
light of the overwhelming evidence we are compiling with this study it
will not be long before Cardy and his like are forced to give up their
fat cat thrones.
Cardy and I will meet in the very near future and he won't like it
one bit! of this I am certain.
Fighting tooth and nail for people with multiple sclerosis.
Andrew K Fletcher

New to the Study,Tuesday 7-Sep-1999 17:36:44,206.214.102.75 writes,Hi
Everyone!
I just started 2 weeks ago on 8/23. I have RRMS and was diagnosed
about 4 years ago. I have trouble walking and use a cane when going
outdoors. I also have lots of other symptoms. I think there are some
little changes in some of my symptoms but I don't know if it's
real or not. At this point I know for sure that my left leg got a
little better. It's weak drags when walking and shakes when I bend
my knees (for example I do that to turn on the bathtub water). So now
when I bend my knees my left leg doesn't shake! I hope this therapy
works for me because I really want to do more things for my family (I
have a husband and 2 little children.) ,LL,

4 ½ months later,Thursday 9-Sep-1999 11:45:02,161.184.49.7 writes,I
HAVE BEEN SLEEPING INCLINED 4 ½ MONTHS. I HAVE HAD RRMS FOR ABOUT 16
YEARS.I AM 40 YEARS OLD. THE IMPROVEMENTS I HAVE NOTICED ARE SO VERY
SLIGHT. IT IS NOT UNTILL I RE-READ MY REPORTS TO ANDREW THAT I SEE
WHERE I HAVE COME FROM. MY SYMPTOMS ARE MOSTLY SENSORY ie. PAIN IN MY
LEGS AND NUMBNESS AND TIMGLING IN MY HANDS. I ASLO HAVE (L) OPTIC
NEURITIS. I DO GET FATIGUED YET CAN STILL WORK PART-TIME AND GO
SHOPPING FOR A DAY. I DO PAY FOR IT IF I HAVE OVERWORKED MYSELF.I HAVE
NOTICED I AM TAKING LESS ANALGESICS AND SLEEPING BETTER.I PLAN ON
FINISHING THE STUDY AND WILL PROBABLY SLEEP INCLINED FROM THEN ON.I
APPRECIATE THE PEOPLE WHO WRITE TO THIS MESSAGE BOARD. IT INCOURAGES ME
TO CONTINUE SLEEPING "TILTED".
BYE FOR NOW LAURA ,Laura,

Sleeping on the Side,Sunday 19-Sep-1999 00:14:40,206.214.102.55
writes,Is it ok to sleep on the side all night long? Will it slow down
or stop the recovery? I have to sleep on my side because every time I
lay on my back either one of my legs would start jerking (Periodic
Limb Movement Syndrome). I think this problem has increased since I
started sleeping inclined. I also still get them during the day and
the jerkiness seem stronger than I've ever seen before. I hope I'm
not getting worse. (I have RRMS and was diagnosed 4 years ago but may
have had MS for quite a while prior to that.) ,LL,

Re: Sleeping on the Side,Sunday 19-Sep-1999 15:39:49,212.159.142.49
writes,Sleeping on ones side marginally increases the angle of the
spine and may therefore be more productive than sleeping on ones back.
If possible try sleeping on alternate sides.
Your increased involuntary movement indicates that the nervous system
is responding and you shouldn't experience this for more than a
couple of weeks as a person who has relapsing remitting MS.
Just hang in there and see this study through to its conclusion.
Kind regards
Andrew

Sleeping on the Side,Sunday 19-Sep-1999 00:14:40,206.214.102.55
writes,Is it ok to sleep on the side all night long? Will it slow down
or stop the recovery? I have to sleep on my side because every time I
lay on my back either one of my legs would start jerking (Periodic
Limb Movement Syndrome). I think this problem has increased since I
started sleeping inclined. I also still get them during the day and
the jerkiness seem stronger than I've ever seen before. I hope I'm
not getting worse. (I have RRMS and was diagnosed 4 years ago but may
have had MS for quite a while prior to that.) ,LL,

Re: Sleeping on the Side,Sunday 19-Sep-1999 15:39:49,212.159.142.49
writes,Sleeping on ones side marginally increases the angle of the
spine and may therefore be more productive than sleeping on ones back.
If possible try sleeping on alternate sides.
Your increased involuntary movement indicates that the nervous system
is responding and you shouldn't experience this for more than a
couple of weeks as a person who has relapsing remitting MS.
Just hang in there and see this study through to its conclusion.
Kind regards
Andrew