Posted by
Ian Kemp on
URL: https://www.es-forum.com/Re-Supplements-ban-tp1540466p1540502.html
Hi Evie,
Yes you're absolutely right - the problem is very poorly understood at the
moment by the medical profession (and by everyone). We have got virtually
no useful help from the Health Service over here on this, a bit from
nutritionists and alternative health practitioners (but also a lot of
rubbish and some harm), and some real help from one or two private
specialists who were experienced doctors and took a real interest in this
area. They are expensive, and they have their own bees in their bonnets
which one has to be aware of, but from our experience they are the best
there is at the moment.
It seems to me therefore that we have to increase our efforts to collate
evidence and case histories and gain more widespread recognition in the
medical profession that ES and MCS are real (just as ME is now gaining more
acceptance). Then we might get young doctors who get the vision for
researching into the root causes and getting somewhere towards solving the
problem. At the moment it seems to me that young doctors fresh out of
medical school won't know the problem exists because it hasn't been
identified and taught to them, and if they do find out, they would be
frowned on for wanting to research into such a "way-out" subject and
wouldn't get grants. Most of the people we've met (doctors and
nutritionists) who have taken an interest in ME, MCS and ES have done so
because either they or a family member or close friend had the problem, and
it therefore came forcibly to their attention that (a) it exists and (b)
current medicine can't cure it!
Ian
_____
From:
[hidden email] [mailto:
[hidden email]] On Behalf Of Evie
Sent: 04 February 2006 09:28
To:
[hidden email]
Subject: RE: [eSens] Re: Supplements - ban?
Hi, Ian,
Unfortunately, many are like me--couldn't get medical help if we handed
out million dollar bills at Mayo Clinic. I went to over 75 doctors and none
could dx me. Only 2 could help me at all. If it hadn't been for my "self
medicating", I would have had no medicating at all, except for
antidepressants that seemingly every doctor I ever went to were so sure I
needed and would help me, (and only made me worse on the few occasions I
actually filled the prescriptions.) I agree that there are alot of snake
oil salesmen out there, but in my experience, I have lost much less money
over a $30/bottle supplement that didn't work than I have over a $130/visit
to a doc plus a $100 prescription/visit. And most often when I did my
homework first, the supplement worked and was not a loss.
Another 2 cents, ;)
Diane
Ian Kemp <
[hidden email]> wrote:
Without wanting to endorse the pharma companies and regulators too
strongly,
I think they do have a point. New drugs have to go through various clinical
trials to make sure they are (a) effective and (b) not harmful to people, at
least in the short term. These aren't required for many "natural" products.
So we have the situation of some products being heavily advertised on the
Internet with what often sound like "pseudo-science" explanations and
unproven claims. Not only do some of these seem to be just making a lot of
money for the suppliers, they also can put people off useful supplements
from reputable suppliers which might really work - it's so hard to sort out
the wheat from the chaff.
The other angle is that self-treatment can cover up a serious problem. Some
supplements contain many times the normal required dose which most people
get from food. Either it's all hype, or if you really need something that
strong, it shows there's something badly wrong somewhere which needs
attention! Like if your fuse keeps blowing, you don't just stick in thicker
wire and metal rods, you try to find the short circuit. I firmly believe
that self-medication covered up the extent of Sue's problems during a period
when we might have had a chance of solving them, before her immune system
got too seriously compromised. But, that being said, I'm not sure even then
that we would have found anyone who really understood what was going on in
her body. It has taken a couple of years of searching and several months of
specialized tests to get any real idea.
Ian
_____
From:
[hidden email] [mailto:
[hidden email]] On Behalf Of
snoshoe_2
Sent: 01 February 2006 23:05
To:
[hidden email]
Subject: [eSens] Re: Supplements - ban?
Wish I had my old links list still. Had some there. CODEX and DSHEA
are no joke. It's not only, eventually going to cover all natural
supplements, but eventually our whole food suppy.
With the supplements, it is the greed of the pharmaceutical industry
not having control over it. That's the only things I can afford, and I
don't like their chemicals anyhow.
If you can't grow or collect your own herbs, you will need Rx's to get
them. There are frameworks in place that are going to be gradually
added to over time. If I find more info. I'll post it.
On another topic, from a link someone posted I found this, I think
someone asked about rebounding? I've been looking for one in 2nd hand
store myself, they get them occasionally -mini trampoline. Here's what
it said on the site:
Bouncing or Jumping is a Cellular Exercise
Your body has about 60 trillion cells. The 2 to 4 G forces
(gravitational pull) involved in bouncing squeezes out toxins. Then,
during the brief weightless period when the body is suspended in the
air, the lower pressure in the cell promotes the movement of nutrients
into the cells. Thus the flow of materials to and from cells is
improved. It is like getting every cell in your body to exercise. Its
the old Hokey-Cokey "in out in out, shake it all about"!
http://www.electrosensitivity.org.uk/ Under News Update section.
~ Snoshoe
--- In
[hidden email], "Ian Kemp" <ianandsue.kemp@...> wrote:
>
> There has been quite a lot said over this side of the pond about the
> possibility of the EU requiring "natural" remedies and supplements to
go
> through clinical trials for effectiveness and side-effects, just like
> pharmaceutical drugs. Obviously this would increase their cost
> substantially and some items might be lost from the market. However
it is
> controversial and there are strong lobbies on both sides, so nothing
has
> happened as yet.
>
> Ian
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