Hi Kevin.


A couple of your comments indicate to me some miscommunication still
on what I'm discussing here. For clarity I'll give a quick overview to
make sure we're both on the same page.


1. there is a standard form produced for doctors and specialists


2. It is to be filled in when they come across a clear positive result
that they consider out of the ordinary, unexpected, ie in a small
percentage of cases.


Lets spin 3 examples:

2a. A patient they'd been treating with severe depression, with little
result, and held no hope for. The person rarely washes or shaves,
shows practically no interest in anything. Patient has been written
off by the DSS as being incapable of work for life. Specialists have
said basically there's nothing more we can do, if he tries suicide
again we'll admit him to a psych ward long term for his own safety.

The patient isn't seen for a while, and comes back one day with an air
of confidence, a clean suit, a job, a calm attentive and positive
attitude, a whole new perspective on thier previous problems,
interests, friends, life plans, and lots of smiles. Person says
'well, I did this, and the problems all gone now'. The doc says, wow,
what a change! All the depression indicators have gone. At this point
the form gets used.


Example 2b: a patient being treating with life threatening asthma,
regularly admitted to A&E for emergency treatment, on strong drugs
which dont seem to be controlling the problem effectively. (A&E = ER)

Doc hears nothing for a while, forgets about patient, then one day
they come in and say the problems all sorted now. They say 'nothing
helped until I took linseed oil, now its just not a problem. I havent
been to A&E for 8 months now.' Doctor checks NHS records, and indeed
they have not needeed A&E in the last 8 months, or even any
prescriptions. Breathing flow rate test shows full recovery. At this
point the form gets used.


Example 2c: a patient being treated with chronic severe eczema, has
seen all the specialists, picks up scripts for creams regularly, often
treated for secondary infection.

Doc hears nothing for a while, forgets about patient, then one day
they come in and say 'Look, no more eczema! Nothing helped until I
stopped eating dairy products, been just fine ever since.' Doctor can
see they no longer have any eczema. Doc checks NHS records, and they
have not had any prescriptions for 6 months. The form gets used.


3. These forms are filled out for all conditions, not a small
selection of conditions. Any surprising positive result is reported,
regardless of the condition.


4. The data is collated centrally, and any results that stand way
above the noise level are looked for.


5. Any strong positive results indicate a reason to do a more in depth
controlled trial on anything found - they obviously do _not_ indicate
something should be used in clinics! That is well down the line.


I hope this is clear.




All one need do is collect the data:
1. realise this is an effective way to learn successful methods
2. attract the people
3. assess the claimed results
4. Apply statistics to discover what is actually working.

Then we will know what works.

But you can't apply meaningful statistics to back of the envelope
studies.

I'm not suggesting a back of envelope study. The data already
exists,
and only needs collecting and assessing. The individuals have
mostly
been assessed sufficiently within the medical system to know they
have
found a real result. Applying statistics to such collected data
does
indeed reveal a clear pattern. Lets give you an example.

method A 3 positive results out of 112 attempts
method B 30,000 positive results out of 50,000 attempts
method C 71 positive results out of 400 attempts
method D 4 positive results out of 6 attempts
method E 60 positive results out of 900 attempts

Very simple stuff, it shows clearly which method should be
researched
in more depth, and which one might warrant more data collection.
This
elementary statistics can indeed be applied.

Correlations by themselves have little value. Correlations have to be
shown to be *causative*.

That comes later. Strong correlation is generally sufficient reason to
do the further in depth study. 30,000 successes out of 50,000 attempts
is of value for that.


I agree that you can use
this as a starting point for further investigations,

Good!



One needs controlled studies, double-blind tests etc...
etc....Anything else is, in reality pretty much useless.

This is a standard misperception of our time.

This has evolved precisely because it was recognised that
the prior methods had seriously failings.

Correct. What is incorrect is to imagine those prior methods to be
useless. How useful they are depends on various factors, and it is
really quite easy to show that in some cases good useful results are
obtained - and in some nothing is obtained.


Collecting the info I
propose would indeed show who has recoverd from what and how, and
it
will show up any substantial trends. Such data is not 100%
reliable,
but 75% reliability is more than enough of a basis on which to do a
more thorough study on a method. I'll explain this more further
down.

One has no real idea how reliable it is at all. There are too many
places where the results could be totally meaningless.

There are expected to be some. It will be less reilable than a similar
but controlled study, but that does not zero its usefulness.
Controlled medical studies arent too reliable either btw. This
approach has both pros and cons compared to controlled medical
trials.... another time tho.


lots of
doctors and nurses have come across the odd one who achieved a
remarkable result with their condition.

Which could have been luck, i.e. nothing to do with any purported
cure,
just fixed itself on its own. Happens all the time.

Of course. But when you get the data and find tens of thousands of
results from a particular method, way above the luck level with all
other approaches, that is statistically significant data, not just
luck. That is what we're looking for.

I agree, if you see strong correlations, then this should warrant
further study.

Good!



Yet the NHS is failing to
collate and assess such data, and study known successes to learn
more
techniques it can apply.

One offs are not success.

So if you have a condition and you find a way to successfully treat
it, and have used the treatment lets say 10 times in your life, and
it
has resulted in rapid favourable outcomes each time, you're saying
that's not a success? It is by definition a success.

Thats not what I'm saying. I meant one off by not working on all
individuals, only a few individuals.

For example, my twin brother suffered with severe eczema for around
25
years, from birth. Continually scratching. It was horrendous. His
skin
was a mess. Nothing helped. His life was utter misery from it. One
day
he decided to go completely vegan, that's is no animal products
whatsoever. After around 3 months, he noticed that he was no longer
scratching. He was cured, and has been ok now for the last 20 years.
On
occasions he has inadvertently taken animal products, in all cases he
now has a severe allergic reaction confirming that food was the
problem.

So, this method worked for him, will it for others?


If a method works often enough for it to rise well above the noise
then it would be picked up by what I'm discussing. If it doesn't, it
won't. No problem there. This approach will never pick up on the ones
that have just a 3% success rate.

The truth is no-one knows what success rate veganism gives for eczema.
No company stands to make out of studying it. But the NHS does. This
is true with many conditions and treatments. I have come across a lot
of people who have resolved their own problems when they were
considered to be beyond help. There is potential there.



This can
*only* come about by controlled trials. This is really a
no-brainier.

That's what you've been taught, and I understand why. In reality
you
dont need controlled trials to get 75% confidence.

This makes no sense. Without controlled experiments you have no idea
what you've got. Its 101 science.

I think you're making assumptions there. Read on. (BTW this method is
already used here to detect potential carcinogens)


You can get that by
pooling multiple results of uncontrolled trials. You'll never get
100%, but with some things you can get enough confidence to warrant
doing a more in depth investigation.

The data could all be Swiss cheese.

IRL with a large number of results some will be and some wont. You get
to assess the noise level and look for anything that rises well above
it.


The literature is filled with erroneous "studies".

Thats right, and this is why controlled studies are normally demanded.
What is not taught in your science 101 is just why so many controlled
(and uncontrolled) studies produce junk results. When you address some
of the problems you can get uncontrolled results with a useful
probability of correctness. You can argue on that, but its been done,
many times. I'm trying not to get too much into all that here.



Now, tell me, was the treatment oral magnesium suphate discovered
by
double blind controlled trials? I think not. Yet it works, and was
discovered to work.

You can pick any one off the cuff example you like, but it means
nothing
to the principle of doing good science.

It means that uncontrolled studies do turn up results some of the
time. Its a known fact. Its also known there are ways to improve the
odds, particularly by using large numbers of test results from a wide
variety of sources.


Obviously it is not only controlled trials that
can produce useful data, you only have to understand statistics to
see
that, rather than believe what you're taught blindly.

You doing that condescending one-upmanship again.

no, I'm just wanting to avoid going down that path. Like I said there
is a whole nother threads worth to this branch-off. We have enough to
discuss just in this one. Suffice it to say very briefly that
controlled studies are not the research cure-all hoped for. The
proliferation of controlled studies with duff results in medicine
shows controlled medical studies to be unreliable too. While your
point about what a controlled study gives you is sound in theory, it
isnt like that in practice. There are serious issues with controlled
medical trials. But no more diversion.

If I just wanted to be condescending I'd say ho-hum. I don't want
to because I prefer discussing, and I realise everyone has plenty of
room to learn, me included. Sometimes assumptions are wrong. I'm not
being condescending, the same basic truths are so for all of us.


The scientific method
is not something one learns "blindly". This is exactly what the
method
is designed to eliminate. Its a process to ensure that what you think
you have, is what you have.

We know that, but I dont think thats the point here. Not all things
are practical to do controlled studies on. You're then left with 2
practical options: dont study it, or study it uncontrolled and accept
the failure rate, and use your positive results as preliminaries for
tighter studies when warranted. That is perfectly valid science.


When peoples welfare is at stake, its even
more relevant then in the inanimate sciences.

Directly, no-ones welfare is at stake. An uncontrolled study can only
be used to pinpoint any strong trends that indicate a few methods
deserve more thorough investigation. That is not putting anyones
welfare at stake, as you seem to suggest.

Indirectly, welfare comes down to which is the cheaper method per
result of finding a new treamtent. If an uncontrolled across the board
collation picks up on one effective treatment it will have done so at
a relatively low cost compared with the currently popular methods. If
that treatment is one people get to go and do themselves without the
NHS paying specialists or drugs, even better, more payback.


There are very good reasons why dbc trials are generally insisted
on,
but to discount _all_ others is an (understandable) mistake... I
could
get into all that in much more depth, but its a whole thread on its
own.

I don't discount non controlled studies out of hand. If they indicate
significant promise, than that is an argument to do the studies
correctly.

Exactly. We agree on that key central principle.



Instead the NHS refuses to learn what it
doesn't know.

Confirmation of claimed cures involve large amounts of money.

The system already has that data. Its on peoples medical records.
Those people have already been assessed by their docs/specialists and
found to be better. It costs little.

Doubt it somehow. Things usually mushroom out of hand.

It is routine that the doc gets to see the patient later, and patient
tells them about their result. And often they do a proper assessment,
and often not. It is routine that the result goes on the medical
records.

Costwise it is only a small percentage of people who have found such
cures. Confirming and completing the paperwork takes one 10 minute
visit. The suggested data collation is pretty basic. As for further
development, the NHS already pays for massive amounts of R&D,
billions, by buying new and still patented drugs. If 0.1% of that
spend is diverted into a process that produces a total of 3 treatment
approaches then it is ahead.


There is simply too many claimed cures to pursue any.

That's what showed me you hadnt understood the idea.


Waiting lists are way over a year
for many treatments in the UK NHS.

For a few yes, but how is this relevant? Long waits are more political
and managerial than financial.


What does need changing is a specific form is required for this, to
make this data clear and mass-harvestable.

Oh dear...another form...I don't think that you have really thought
this
through.

Valid criticisms can be accepted, but 'oh dear' doesnt count as one.


The system don't have it.

Wrong again.
1. It takes no fortune to run a small data collection point and
issue
the forms.

I don't agree. Its extra staff. Every expenditure requires good
support
for it.

Yes... we seem to agree there.


2. It is actually a very cost effective way to do research to find
new
treatments, much more so than paying for drugs that cost billions
to
develop. The system does have the money to pay for that, it just
needs
to allocate a little of that money more wisely.

But you cant determine what will actually pay out in the end. You
assuming that you choose correctly in what your studying. Most won't
pan
out. Its the way life works. There are 1000's of different medical
conditions that all need cured, selecting one, e.g. such as
depression,
is a choice that not many will take.

Hopefully you're clearer now on what's being put forward.


When the survey results achieve a successful treatment, it will
start
to save the system money. It is simply better value than billion
pound
drugs.

Arguable, depression is a non issue for the NHS. They can simply send
depressed people away. Maybe it costs society money in the long run,
but
that will have little impact on NHS policy.

That would be politically unacceptable here. The current edge of
political cost-cutting debate is whether or not sex changers should be
made to pay for their treatment. This is not America


You proposal is really a dreaming proposal.

Its a discussion on a newsgroup, not a business proposal I have any
personal intention of getting involved in.


Nice idea, but will never work.

First I'm hoping you are clearer about what it is now. If you still
think it'll never work, guess what, its already been done on a smaller
scale, and has found results already. Once folk realise there's a
cheaper way of finding working treatments than what's popular today,
this approach will in time become used. Its simply an intelligent and
more efficient approach. Now I dont think it'll be done any time soon,
but in time:

a) a more realistic perspective will be applied to
controlled/uncontrolled medical studies (neither of which are
especially reliable IRL).
b) more awareness will develop of just how many lay people have found
their own successful treatments (many)
C) and as this concept continues to get applied on a smaller scale its
value will become steadily more realised.

Things are already moving in the direction such that all the ground
conditions are being gradually set up now.


It don't take into account the way real life works. Every one is
competing for limited resources, with there own pet agendas.

I know. As the value awareness of this increases, it will end up on
someone's agenda at some point. There are folks who stand to gain from
it after all.


I don't
think you understand just what it takes to get an organisation to go
and
spend money, especially one like the NHS.

We haven't even addressed that question, so I see no base for this
criticism.


The risks of doing something wrong simply does not allow for this
approach.

That doesnt stop todays researchers. Research projects get it wrong
all the time, its expected, its OK.

I did not suggest this. Its the people that implement/recommend the
cure
that has the liability. If something goes wrong, people get sued. Its
that simple.

No they dont, our laws are different to yours.

Secondly your point is relevant to the studies that are done on safety
before a treatment is used clinically. It has nothing to do with the
phase of the process I'm discussing here, ie collecting data and
looking for potential.


One only has two say the words "law" "sue" to put most people in
the
picture.

No, you've just missed it. Cite me a case of a researcher being
sued
for honestly producing data that turns out to not pan out long
term.
Its an erroneous criticism.

No, you missed it. Why would you think I was referring to the data
collectors?

I didnt, its obvious you weren't. I gathered you thought I was
proposing that initial study data be used to recommend tratments to
clinic patients, which is certainly not what this is about. That would
not be a sensible proposition.

Any clinical treatment would need to be well investigated before being
recommended to doctors and patients, and established to be
sufficiently safe. I think thats fairly obvious. The process from
first study to final use involves a bare minimum of:

1. initial data collation to find any potential treatment
2. controlled trials to investigate the look-goods more rigorously
3. trials to establish safety of such treatment
4. cost/benefit analyses, etc.

Going thru the correct procedures eliminates suing over here, and
keeps your U.S. sue risks down to current medical levels over there.


With what I'm proposing it is clear upfront to all that some of the
leads this generates will pan out and some wont. There wont be any
surprises or broken promises when something's found not to work
later,
we know that will happen.

Unfortunately, only a few % will pan out. its the way its always
been.

Yep - in a different process. Bear in mind this process involves the
use of:
a) drugs that are already on retail sale
b) non drug approaches
etc, so some of the work associated with todays new drug trials has
already been done, or doesnt need doing.

If we get a few % it will in fact be quite fortunate.


I'm thinking you'll be rather clearer by now on just what I'm
proposing.

Indeed. Wishful dreaming...

I think it will happen in time, things are moving in the direction
such that all the ground conditions are being set up now. Time will
tell for sure.


****, I got to ban myself from this for a while, this took way too
long. Nice discussing again. I'm sure we'll have more when curiosity
gets the better of me. It always does.


Regards, NT