Re: trust no one

May 1, 2001

Hi Tom

You titled your post " trust no one " . I meant to advise a healthy skepticism,

not to advocate cynicism. And I certainly do not suggest alternative health

is wrong headed or of no value. Quite the opposite. It's just difficult to

separate the wheat from the chaff. And that's why we're here - we need each

other for much of that. If a friend put money into a scheme that looked

suspicious, you'd speak up right? And that wouldn't mean you didn't believe

in investment. It would just indicate you believed in prudence. Anecdotal

evidence is not bad evidence - but the most fundamental sort of evidence.

None of us wish to be guinea pigs. We value the opinion of someone who has

gone before. But all evidence is subject surely to scrutiny as to its being

applicable and trustworthy.

And in areas like these machines, the stories don't hit home in the same way

that folk remedies do. Olive oil and lemon juice are long standing remedies

for gallstone. It is demonstrated by ultrasound to do the job. It is not

just dependent on anecdotal evidence - though clearly that is what catches

the attention. This is a perfect example Tom, of what I was meaning about a

wall between the medicos and the alternatives. Such a pity.

I used " silly " quite on purpose. For this machinery purports in scientific

language to accomplish things in a scientific manner. One cannot use the

language of physics and chemistry and math and medicine and not be held

accountable for the claims and explanations given. For example words like

magnetism and energy are used without any relation at all to what magnetism

or energy are about.

Carl Sagan was a respected man of science. He most strongly disagreed with

Emmanual Velikovsky and his theory about the origins of Venus and its

connection to the stopping of the sun in ancient times. But when Velikovsky

was refused his day in court by the American Academy of Science, it was

Sagan that brought the Academy to reconsider and give him an audience. Sagan

felt strongly that truth did not depend upon from whom or from where it

came, but would stand on its own feet. Truth was something one could debate,

investigate and be reasonable about. So Velikovsky got his day in court.

Later Sagan wrote a marvellous book " Brocas' Brain " where he investigated

the ideas in detail and discounted them without rancour. He set an example

in more than one way.

There is a side to life that is not science. There is mystery deeper than we

can fathom. Experience of these mysteries is part of being human. But when

we use the language of science - with all its care and consistency and

discipline to describe the mysterious, we only confuse things terribly. In

the language of religion these two aspects are called logos and mythos.

Without logos we remain in superstitious fear and wonder. Without mythos,

life has no meaning or purpose. They are in balance. They are different.

There is not one truth nor one way of seeing things.

You're quite right about the ABC's and their 30% efficacy. But like

placebos? No not at all. That's not consistent. The number 30% just shows up

again. The ABC's operate on very specific principles of biology and with

some individuals and in some circumstances they are most helpful. The

meaning of adding the " hope and expectation factor " is perhaps like this.

Let's suppose you are a good candidate for ABC's in the eyes of your doctor.

Now if you are gloomy and negative about what is ahead for you, the drug's

biological effect will be multiplied by a negative factor and the advantage

may well be less than the Doctor expects. If on the other hand, you are

positive about what is ahead and expectant that it will do you good, then

whatever such therapy might do for a laboratory rat, it will do for you

multiplied by some positive factor. Of course the Doctor and pharaceutical

company will take the credit!

One of the great difficulties in discussions with technical aspects is that

one must distinguish between possibilities and probabilities. While many

things are possible, fewer things are probable. A characteristic of

experience is that we learn better to distinguish between the two, and our

early world of black and white becomes shades of grey.

We afflicted only wish to use what science offers and what tradition and

alternative perspective offer as well. We wish to carry the best of what

alternative good news we find to our Pphysicians. We wish to understand each

other's stories. Without clear consistent use of scientific language we will

not succeed.

Peace.

Jock

Trust No one

> " I'd like to tell you such machinery is silly science and a waste of your

> consideration "

> Jock

> I would imagine that Jock expected a little Flack from this. Science

is

> a repeatable experiment that proves similar results. Silly how there is

No

> Cause or Known Cure but we have THIS...ABCs that offer improvement in 35%

of

> patients...Hmmm...isn't THAT the same results as a Placebo? 'Silly

Science'

> got OUT my Gall-Stones without surgery...erased my infection without

> Anti-Biotics...

> and has 'research' instead of just 'anecdotal evidence'.

> I EXPECT some Flack back !

> -Tom-

>

> .

>

May 2, 2001

You're quite right about the ABC's and their 30% efficacy. But like

placebos? No not at all. That's not consistent. The number 30% just shows up

again. The ABC's operate on very specific principles of biology and with

some individuals and in some circumstances they are most helpful. The

meaning of adding the "hope and expectation factor" is perhaps like this.

Let's suppose you are a good candidate for ABC's in the eyes of your doctor.

Now if you are gloomy and negative about what is ahead for you, the drug's

biological effect will be multiplied by a negative factor and the advantage

may well be less than the Doctor expects. If on the other hand, you are

positive about what is ahead and expectant that it will do you good, then

whatever such therapy might do for a laboratory rat, it will do for you

multiplied by some positive factor. Of course the Doctor and pharaceutical

company will take the credit!

I just have one thing to point out here. I don't know about A and B, but

with C, (Copaxone), it is not that it works on 30% of the people - it's 30% reduction in progression of the disease. And, after 6 years, it has shown to be 72% reduction in progression. (I'm referring more to Tom's comments than what is written above, but I lost his email when I reinstalled my server software.)

Carol

May 3, 2001

>I just have one thing to point out here. I don't know about A and B, but

>with C, (Copaxone), it is not that it works on 30% of the people - it's 30%

>reduction in progression of the disease. And, after 6 years, it has shown

>to

>be 72% reduction in progression.

>Carol

How do you know?

sceptic Mike

May 3, 2001

>I just have one thing to point out here. I don't know about A and B, but

>with C, (Copaxone), it is not that it works on 30% of the people - it's 30%

>reduction in progression of the disease. And, after 6 years, it has shown

>to

>be 72% reduction in progression.

>Carol

How do you know?

sceptic Mike

Mike,

Then, I take it you haven't seen the reports? I got the original report, issued by the school of researchers, then I saw it written about by Dr. Squillicote (not sure if I spelled that correctly), and then a 'blurb' was published about it in the MS Society publication. I lost the original report when I reformatted my hard drive. I still have the article by Squillicote, but I'd rather send you the original from the school. I have a friend who has it and have just requested a copy. I will post it here, as soon as I receive it. Stay tuned!

Carol

May 3, 2001

In regard to the effectiveness of Copaxone, there have been no changes in my

MRI's in the last 12 months. (really longer than that but I am only looking

at the latest reports) Is it all from Copaxone? I don't know. Is is part

placebo effect? I don't know. Is it just that my MS has stabilized? I don't

know.

That's probably the most frustrating part of MS. Would I want to risk this

good report by stopping Copaxone? No. And hey, I will take placebo effect as

a " booster shot " anytime. In my opinion it justs shows the power of the

mind/body connection. I visualize the Copaxone working in my body. May sound

a bit kooky but that's just me. cyn

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Re: trust no one

>

> >I just have one thing to point out here. I don't know about A and B,

but

> >with C, (Copaxone), it is not that it works on 30% of the people - it's

30%

> >reduction in progression of the disease. And, after 6 years, it has

shown

> >to

> >be 72% reduction in progression.

> >Carol

>

> How do you know?

>

> sceptic Mike

>

> .

>

May 4, 2001

Mike,

Here is a copy of the Copaxone 6 year study, from the University of land.

Carol

Longest Study of Multiple Sclerosis Drug Shows That Benefits Continue For Six Years

Tuesday August 22, 8:32 am Eastern Time Press Release SOURCE: University of land

BALTIMORE, Aug. 22 /PRNewswire/ -- Results of a six-year study show that sustained use of the drug Copaxone significantly reduces the relapse rate and also delays disability in people with the relapsing- remitting form of multiple sclerosis (MS). The study, which is published in the August issue of Multiple Sclerosis, is the longest evaluation so far of a licensed MS therapy. The study is scheduled to continue until mid-2002, when participants will have been evaluated for 10 years.

Of the 101 patients receiving daily injections of Copaxone throughout the past six years, 77 have had three or fewer relapses, and 26 have not had any relapses. Study participants also experienced a steady decline in the relapse rate, so that on average, they were experiencing one relapse every four to five years, compared to two medically documented relapses in the two years prior to taking the medication and being part of the study. That represents a 72 percent reduction in the annual relapse rate.

"The findings suggest that not only is Copaxone well-tolerated, but that the longer a patient takes the drug, the better it works," said , M.D., professor and chairman of neurology at the University of land School of Medicine in Baltimore and principal investigator of the multi-center trial.

MS affects approximately 350,000 people in the U.S. About 60 percent of all MS patients have the relapsing-remitting form of the disease, which is characterized by relapses, also known as attacks. During those attacks, a person has symptoms that include numbness, blurred vision, difficulty walking, fatigue, and pain. Those symptoms are usually temporary and are followed by periods of remission, in which the person feels no symptoms.

"Over time, people with relapsing-remitting MS experience fewer relapses, even if they are not taking medication. But they go on to have increasing permanent disability," said Dr. . "This study showed that there was a beneficial effect of treatment with Copaxone on neurological disability, which continued over six years when patients were regularly evaluated by their examining neurologist," added Dr. .

Results of the study are important to people like 44-year-old Sue Rebstock of Baltimore, who has been living with MS since 1990 and is a study participant.

"In 1993, when I came home from work, I was too exhausted to cook or take my daughters to outside activities, such as cheerleading practice," said Rebstock. She also remembers experiencing another common effect of MS -- blurred vision.

During her first month of taking Copaxone, however, Rebstock had more energy. Over the course of treatment, her overall condition has improved. She is not bothered by blurred vision and she even has the energy to take aerobic classes again.

Rebstock was diagnosed with MS after her optometrist referred her to a neurologist for complaints of blurred vision. She was discouraged to learn the expected course of the disease, which is that on average, she could expect to have some sort of permanent disability within 10 years of diagnosis. Within 15 years, half of the people living with MS require some sort of walking aid. "My biggest fear was that MS would make me incapacitated and a burden to my family," she says.

An important finding in the study was that Copaxone could be taken daily for years and be well tolerated, according to Dr. . "This is good news because managing relapsing-remitting multiple sclerosis requires long-term drug therapy. Patients' willingness to make injections of Copaxone a part of their daily routines is an important measure of the tolerability, safety, and personal benefit of this treatment."

Dr. also directs the land Center for Multiple Sclerosis at the University of land Medical Center, which is taking part in an international, multi-center study to evaluate the oral use of Copaxone. The trial has just gotten underway and will last for 13 months. The goal is to assess the effectiveness of an oral form of the drug compared to a placebo.

Multiple Sclerosis is a peer-reviewed, bi-monthly scientific journal for clinicians who treat MS patients, and researchers in all aspects of the biology and pathology of the disease.

The land Center for Multiple Sclerosis is committed to providing the highest level of diagnosis and long-term care for individuals with MS. The Center works closely with patients, families, and primary care physicians to develop treatment plans that help patients manage their conditions effectively and lead active, productive lives. The Center is recognized as a world leader in innovative research programs with the goal of finding effective therapies and eventually curing or preventing MS.

SOURCE: University of land

May 8, 2001

In other words, four of ten people with multiple sclerosis do not believe

the blandishments of the medical trade. The following is lifted from s

poll.

Many Multiple Sclerosis Patients Are Not Getting Adequate Treatment

ROCHESTER, NY -- May 8, 2001 -- Despite the availability of drug

therapies that can effectively slow the progress of this debilitating

disease, large numbers of patients diagnosed with multiple sclerosis

(MS) are not receiving treatment. This is according to a new study of

MS patients and neurologists commissioned by Biogen, Inc. and

conducted by Interactive. The results are being released today

during the 53rd Annual Meeting of the American Academy of Neurology.

According to the study, more than four out of ten (42 percent) MS

patients who participated in the survey were not taking any of the

medications approved by the Food and Drug Administration (FDA) for

the treatment of MS. Older patients and those diagnosed with MS at

least five years ago were even less likely to be taking drug therapy.

This is despite a substantial body of evidence demonstrating the

effectiveness of these medications, as well as a recommendation by

the National Multiple Sclerosis Society that all patients with the

most common form of MS should be on medication. Many MS patients who

go without treatment appear to do so because of a mistaken belief

that in the absence of outward signs of disease activity, the disease

is not progressing

The most common reason given for not receiving treatment -- cited by

43 percent of the patients surveyed who were not on treatment -- was

that they hadn't recently had a relapse. Numerous studies have shown

that even when there are no outward physical signs, the disease is

often progressing in terms of cognitive decline, brain atrophy, and

number of brain lesions detectable by magnetic resonance imaging

(MRI). Patients do believe that slowing the progression of physical

disability rather than reducing the number of relapses should be the

main objective of therapy -- as do the vast majority of neurologists

(87 percent and 81 percent, respectively). But the mistake many

patients seem to make is that they assume that the absence of

relapses indicates a lack of disease progression and the

corresponding physical and mental decline.

" Given the current state of treating this disease, too many MS

patients are not receiving treatment that they could benefit from.

The tragedy is that because they feel relatively healthy, they don't

think they need it - even though the disease can be causing physical

and cognitive decline in the absence of symptoms, " according to

Leitman, Group President, Health Care, Education, & Public

Policy at Interactive. He continued, " The study demonstrates

that many of these patients were diagnosed with MS before treatment

that could actually slow the course of the disease was available.

Efforts should be made to reevaluate these patients as candidates for

therapy, now that therapy that addresses more than just the symptoms

is available. "

Multiple sclerosis is a chronic, often disabling, disease of the

central nervous system that is most likely to affect women and those

between the ages of 20 and 40. Symptoms may be mild (such as numbness

in the limbs), or severe (such as paralysis or loss of vision). In

addition to the physical effects of MS, those stricken by the disease

often suffer cognitive decline. In fact, more than two-thirds of

those surveyed said that they had experienced cognitive impairment

such as short-term memory loss, problem-solving difficulties, or

problems processing information.

A large portion of those diagnosed with MS feel they are stigmatized,

expressing fears that they could lose their job or be excluded from

active society if others became aware of their condition. Nearly four

out of ten patients surveyed said that they had lied or failed to

disclose their diagnosis to family members, friends, or colleagues

because they feared what would happen if people knew they had MS.

Additionally, four out of ten MS patients surveyed, who were not

currently in a long-term relationship, said their diagnosis has had a

major impact on their outlook about marriage and long-term

relationships. And, at least a third of those surveyed reported that

their diagnosis had a negative impact on their personal

relationships. Fully half said that they had stopped working on

account of their MS.

Not long ago, people diagnosed with multiple sclerosis had few

treatment options beyond those that could alleviate the symptoms of

the disease. In the last decade, however, drugs have been developed

that not only lessen the frequency and severity of flare-ups or

exacerbations, but more significantly alter the natural course of the

disease, slowing the progression of physical and cognitive disability.

The Medical Advisory Board of the National Multiple Sclerosis Society

has recommended that therapy be initiated for MS patients as soon as

possible following a definite diagnosis of relapsing-remitting MS,

the most common form of the disease.

This Interactive study was conducted online during April 2001

with 562 patients who were diagnosed with relapsing-remitting or

secondary progressive MS, and 251 neurologists who treat patients

with MS. The neurologist sample was designed to be representative of

all neurologists who practice in the United States. The neurologist

questionnaire averaged approximately 13 minutes in length and the

patient questionnaire approximately 17 minutes in length

SOURCE: Interactive

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