What constitutes reliable evidence?

[Valentijn]

I think this is how good science is supposed to work.

The problem is that you are rejecting how science works. Just because the process is imperfect and can be abused, you seem to be suggesting that non-science is just as good. It isn't.

 

[Laelia]

The problem is that you are rejecting how science works. Just because the process is imperfect and can be abused, you seem to be suggesting that non-science is just as good. It isn't.

Please can you explain the way in which you think I am rejecting how science works? And in what way I am suggesting that non-science is just as good? Thanks ☺

 

[Undisclosed]

As a doctor I wouldn't prescribe placebos and I wouldn't recommend CAM. But if a patient was already using CAM or wanted to try it, I would explain that it is not supported by scientific evidence and when it appears to work it is likely due to a placebo effect but it's probably safe. I would tell the patient 'if you decide to disregard the lack of evidence and try it, either because you believe it might work or just in hope of getting a placebo effect, I have no objections. But please don't discontinue conventional treatment x because it's essential to your health'.

Don't get me wrong, I like Dr Hall and I think she is well meaning when she tries to warn patients about using alternative medicine. However I think she is very misguided in her belief that conventional medicine is always efficacious and safe.

I don't think you can conclude from her comments that she believes conventional medicine is always effacious and safe. I don't know any doctors who believe that. And safe doesn't mean absence of side-effects.

I see the post has been edited to:

[Edit: I didn't say what I meant to say in my last sentence, poor choice of words! What I meant to say was that Dr Hall is misguided in her belief that conventional medicine is always as efficacious and safe as it's made out to be]

The safety and effectiveness of complementary medicine exists on a continuum from benign to life threatening. All doctors understand that. There is a difference between removing a wart and replacing a heart. Doctors,have to weigh benefits and if they outweigh the risks.

 

[Laelia]

I don't think you can conclude from her comments that she believes conventional medicine is always effacious and safe. I don't know any doctors who believe that. And safe doesn't mean absence of side-effects.

You're right Kina, of course you can't conclude this, this was a mistake on my part. I did go back to add an edit to the bottom of my post to explain my mistake but perhaps you didn't see that:

[Edit: I didn't say what I meant to say in my last sentence, poor choice of words! What I meant to say was that Dr Hall is misguided in her belief that conventional medicine is always as efficacious and safe as it's made out to be]

 

[Undisclosed]

You're right Kina, of course you can't conclude this, this was a mistake on my part. I did go back to add an edit to the bottom of my post to explain my mistake but perhaps you didn't see that:

I saw it after I posted so I edited my post to reflect your edit.

 

[Laelia]

The problem is that you are rejecting how science works.

Given that you have not replied to my questions, I would like to respond to your accusations.

I'm not rejecting how science works. On the contrary, I'm a great believer in the science process. The problem is that science takes time. And this is time that many of us can't afford to wait for. The sad fact is that we might all be dead before science based medicine provides us with effective treatments for ME/CFS. Sorry if that's depressing, but it's a reality some of us are considering before taking the decision to try treatments which are not currently offered by conventional medicine. If there are low-risk treatments available it makes sense to me to try them. But that's just my opinion. My personal choice.

Just because the process is imperfect and can be abused, you seem to be suggesting that non-science is just as good. It isn't.

I haven't suggested anywhere that non-science is just as good. We're not just talking about science here, we're talking about medicine as well. Two separate things. All I've said is that treatments which haven’t been officially validated might be effective in treating ME/CFS. How is that suggesting that non-science is just as good?

 

[Laelia]

The safety and effectiveness of complementary medicine exists on a continuum from benign to life threatening.

I agree with you Kina that the safety of complementary and alternative medicine exists on a continuum from benign to life threatening. Exactly the same as conventional medicine. However it would be my guess that when examined overall, the safety of complementary and alternative medicine lies on average nearer to the benign end of the spectrum.

 

[pamojja]

..it would be my guess that when examined overall, the safety of complementary and alternative medicine lies on average nearer to the benign end of the spectrum.

We don't have to guess, that much we know for sure. After CVD and cancer, medical injuries including adverse pharmaceutical drug reactions rank third for premature deaths. While dying from supplements is still less likely then being hid by lighting, or the inadvertent deaths from accidentally swallowing soap.

But in this case one really has to differentiate reliable science from applied standard of care medicine. They are obviously not at all overlapping. Otherwise not so many would die from it, and sooo few from unproven traditional medicines. At least the Hippocratic oat with conventional medicine has become totally hypocrite: First do no harm!

I do understand that one can have more trust in science based evidenced medicine than traditional methods, as long as the data and references of each study has been checked.

I absolutely don't understand the blind faith in conventional medicine, when a hospital stay is actually more riskier than going to war! (and not because terminally ill patients go there, but because of preventable medical injuries and adverse pharmaceutical drug reactions!).

But again there is no rational reason why traditional, experimental, natural, non-evidence based medicine should have the same safety precautions as treatments with pharmaceutical drugs - as long as molecules or elements are used, the human biology has evolved with. There IS simply NO evidence of such methods doing as terribly much harm, as methods and synthetic compounds developed in the last hundred years do. Of which Hundredth-Thousands more die from!

Guess all the confusion comes from confusing evidence based science, which what is actually conventionally practiced as medicine, and being ignorant of its actually terrible risks.

While assuming the lack of final RCT-level evidence for traditional medicine (due to lack of funding for not-patentable compounds, but in fact with plenty of in-vitro, animal, and case studies) would equal ineffectiveness and paradoxically, in reality non-existent, terrible harm.

What constitutes reliable evidence?

I've learned something new with this discussion. Despite RCTs being considered the pinnacle of reliable evidence for effectiveness and safety, it can't tell a thing about how applying it on the population level (which standard of care claims would try) - would turn out more riskier than going to war..

And don't tell me that's because that's the nature with disease. If that would be true, where is the evidence for 100.000s death bodies of practitioner not following RCTs, but: 'First do no harm.'

 

[Valentijn]

If there are low-risk treatments available it makes sense to me to try them.

There's a lot of incredibly stupid low-risk treatments available. Unless we want to spend decades and our life's savings trying them at all, it's necessary to use some discernment.

 

[pamojja]

The problem is that you are rejecting how science works. Just because the process is imperfect and can be abused, you seem to be suggesting that non-science is just as good. It isn't.

It would be, if you only meant RCTs with science, but turn a blind eye to actual realities. If you believe the meta-analyses, which found that science based medicine could only reduce 5-year mortality with killer no.1+2, CVD and cancer, by only 1-3% - and causing the 3th most preventable death-rate by mistakes - one has to conclude such science blinded by RCTs (designed to test one agent only at a time) at the level of multi-factorial chronic diseases is still in the middle-ages.

And I rather would turn to a practitioner who still follows the Hippocratic oat instead of RCTs in this case. Practically can't afford, therefore I'm on my own again. Tried to access free standard of care, but each of their suggested treatments came with too much risks, and too little benefits. Personal decision on account of how much risks I'm willing to take. For which I was not only accused of 'non-scientificness', but at worse a personality disorder by a cardiologist. However, I'm glad I can differentiate the actual studies and relate them to the realities I'm facing, and don't have to rely on alleged authority.

It isn't in the case with acute trauma-care. But since we are here concerned with such difficult chronic disease, no-one questioned that.

There's a lot of incredibly stupid low-risk treatments available. Unless we want to spend decades and our life's savings trying them at all, it's necessary to use some discernment.

Admittedly, beside being only able to work half-time and thereby financially strained, Natural medicine did cost me substantially (even without paid practitioners). On the other side, I could not only stay working, but even reverted a 60% walking disability with it. So in the final analysis - worth every cent. Which I can't say from the also substantial monthly health-insurance payments, where I happily have to decline to take it's risk (despite paying for it..)

After my risk/benefits analysis of available treatments, I googled for the most occurring successful case reports in alternative medicine for my condition, and still started precautionary with a dose much below what's recommended, gradually increasing. Well, after about 1 year, reaching the therapeutic dose, I could walk 1 hour again (up from initially 300-400 meters), 2 hrs the second, and with the 6th year disease-specific pains where now more.

I'm painfully aware that's not as it turns out for many here, and it might not work form me again with ME/CFS. But what other hopeful thing than to try? - Of course with discernment, and common sense.


PS: admittedly, sometimes I do think it would be soo much easier if I could just cut off my critically thinking mind, just take the prescribed 2-3 pills, get a prosthesis, don't have to be careful what I'm eating, don't get offended by cardiologists, have my 1% reduction in 5-year mortality, and die however thereafter. My GP told me I'm the only one in his practice, who wouldn't follow the doctors recommendations. But then, I can't be what I'm not.

PSS: from that follows, all those following the doctors recommendations blindly, also can't do other than they are. So why can't we just respect each others for what we are. And stop using derogatory labels?

 

[Laelia]

Unless we want to spend decades and our life's savings trying them at all, it's necessary to use some discernment.

Absolutely. Using common sense and discernment goes without saying.

We don't have to guess, that much we know for sure. After CVD and cancer, medical injuries including adverse pharmaceutical drug reactions rank third for premature deaths. While dying from supplements is still less likely then being hid by lighting, or the inadvertent deaths from accidentally swallowing soap.

I'm not just talking about supplements though, I'm talking about all the various treatment options available with alternative medicine. The table you provide is very interesting, but it doesn't tell us about the risks of these other treatments. Also, as I mentioned on your thread, the table is only looking at risk of death from supplements. There is also the risk of deterioration which for ME sufferers can be a serious one. Another problem with the information you provide is that it only tells us the relative risk of death not the actual risk which can be misleading.

On the whole, I do agree with you though. I'm sure that taking pharmaceutical drugs is way riskier than taking supplements!

I absolutely don't understand the blind faith in conventional medicine, when a hospital stay is actually more riskier than going to war!

Sorry pamojja but this is not quite correct. The chart you have provided is demonstrating that UK citizens are nearly as likely to die from preventable medical injuries in hospital as they are from going to war in Iraq/Afghanistan. But this is not because a hospital stay is as risky as going to war. It's because vastly more UK citizens will be an inpatient in hospital at some point in their lives than the number of UK citizens who will become military personnel in Iraq/Afghanistan.

While assuming the lack of final RCT-level evidence for traditional medicine (due to lack of funding for not-patentable compounds, but in fact with plenty of in-vitro, animal, and case studies) would equal ineffectiveness and paradoxically, in reality non-existent, terrible harm.

I think we need to be a bit careful here. While, I agree with you that supplements are probably much less likely to cause harm than pharmaceutical compounds, they are not without their risks. For example, some vitamins are toxic in high doses as I'm sure you know.

 

[Undisclosed]

I agree with you Kina that the safety of complementary and alternative medicine exists on a continuum from benign to life threatening. Exactly the same as conventional medicine. However it would be my guess that when examined overall, the safety of complementary and alternative medicine lies on average nearer to the benign end of the spectrum.

Not benign for some. For some accounts of deaths, injury etc -- whatstheharm.net -- 368,379 people killed, 306,096 injured and over $2,815,931,000 in economic damages.

 

[pamojja]

I think we need to be a bit careful here. While, I agree with you that supplements are probably much less likely to cause harm than pharmaceutical compounds, they are not without their risks. For example, some vitamins are toxic in high doses as I'm sure you know.

Agree, we all have to be more careful here. But honestly excuse me - because this discussion reminds me in every bit with the one I had... with my mother. She just became 80 (me 50).

She too, as Kina seems to, was seriously concerned about all the handfuls of supplements I started to gulp down with each meal, as well as with numerous powder in water 3 times a day on empty stomach. She couldn't fancy any other, than me at one point inadvertently poisoning myself to death with my dedication to revert my ill-health. While me, in the known of the real difference in the documented risks between supplements and pharmaceuticals, was even more concerned about her unreflected polypharmacy (high blood pressure, cholesterol, diabetes and chronic pain medications).

Lots of stuff for arguments. But to make story short, and probably a bid with the wisdom of old age, meanwhile 8 years later she repeatedly concluded, if supplements would be poisonous, with all what I was consuming, I should be death for long by now. Therefore they could really be not anywhere near that toxic as portrayed in the media. Good on her. Because with the polypharmacy she is still practicing - or maybe the lack of wisdom which comes with old age - I'm still not appeased in her case.

Why?

Because if I, for example rely, on the 2007 annual report of the American Association of Poison Control Centers (I still had on my drive) for mortality as comparison: (and not some website with a clear 1-sided agenda with no evidence for reliability, as Kina preferred)

Number   -   % of all exposures in category   -   Substance
377   -   0.250   -   Sedative/hypnotics/antipsychotics
331   -   0.990   -   Opioids
220   -   0.250   -   Antidepressants
208   -   0.270   -   Acetaminophen in combination
203   -   0.240   -   Cardiovascular drugs
188   -   0.410   -   Stimulants and street drugs
170   -   0.230   -   Alcohols
140   -   0.190   -   Acetaminophen only
99   -   0.230   -   Anticonvulsants
80   -   0.200   -   Fumes/gases/vapors
80   -   0.740   -   Cyclic antidepressants
70   -   0.270   -   Muscle relaxants
69   -   0.090   -   Antihistamines
63   -   0.350   -   Aspirin alone
45   -   0.120   -   Chemicals
44   -   0.230   -   Unknown drug
44   -   0.040   -   Other nonsteroidal anti-inflammatory drugs
36   -   0.280   -   Oral hypoglycemics
28   -   0.200   -   Automotive/aircraft/boat products
21   -   0.080   -   Miscellaneous drugs
21   -   0.040   -   Antihistamine/decongestant, without phenylpropanolamine
20   -   0.050   -   Hormones and hormone antagonists
20   -   0.300   -   Anticoagulants
16   -   0.150   -   Diuretics
...
ZERO   -   0.000   -   Vitamins and Minerals

And double-check with this report looking back 25 years:

Orthomolecular Medicine News Service, February 27, 2007
23 YEARS OF DOCUMENTED VITAMIN SAFETY

(OMNS, Feb 27, 2007) Over a twenty-three year period, vitamins have been connected with the deaths of a total of ten people in the United States. Poison control statistics confirm that more Americans die each year from eating soap than from taking vitamins.

Where are the bodies?
A 23-year review of US poison control center annual reports (1) tells a remarkable and largely ignored story: vitamins are extraordinarily safe.

Annual deaths alleged from vitamins:

2005: zero
2004: two
2003: two
2002: one
2001: zero
2000: zero
1999: zero
1998: zero
1997: zero
1996: zero
1995: zero
1994: zero
1993: one
1992: zero
1991: two
1990: one
1989: zero
1988: zero
1987: one
1986: zero
1985: zero
1984: zero
1983: zero

The zeros are not due to a lack of reporting. The American Association of Poison Control Centers (AAPCC), which maintains the USA’s national database of information from 61 poison control centers, has noted that vitamins are among the 16 most reported substances. Even including intentional and accidental misuse, the number of alleged vitamin fatalities is strikingly low, averaging less than one death per year for more than two decades. In 16 of those 23 years, AAPCC reports that there was not one single death due to vitamins.

These statistics specifically include vitamin A, niacin (B-3), pyridoxine (B-6), other B-complex, C, D, E, "other" vitamin(s), such as vitamin K, and multiple vitamins without iron. Minerals, which are chemically and nutritionally different from vitamins, have an excellent safety record as well, but not quite as good as vitamins. On the average, one or two fatalities per year are typically attributed to iron poisoning from gross overdosing on supplemental iron. Deaths attributed to other supplemental minerals are very rare. Even iron, although not as safe as vitamins, accounts for fewer deaths than do laundry and dishwashing detergents.

http://orthomolecula...mns/index.shtml

One could add up the risks for Cardiovascular drugs, Aspirin alone, Unknown drug, Other nonsteroidal anti-inflammatory drugs, Oral hypoglycemics, Hormones, Anticoagulants and Diuretics my mother is taking. But still remain in the unknown about the incredibly high risk such an untested combination could pose.

I'm sincerely concerned about the safety of my mother. She isn't educating herself about the risks and benefits of the substances (as I would do) she think she needs by believing her Doc blindly.

Still I have to respect her inalienable right to put into her body what and how she decides.


Now to me, on the other side of this argument (which for my mother, at least, has ceased). I documented each and every supplement I took (initially with changing my diet even every bit I ate), along with every lab marker in a spreadsheet since starting supplementing 8 years ago. And educated myself about their pharmacology.

In that time period in average I consumed daily:

33 g of water-soluble vitamins
0.9 g of fat-solubles, including CoQ10 and xanthophylls
12 g of fatty acids, including essentials
8 g of minerals
37 g of amino-acids, including from protein powders
19 g of plant extracts
and numerous other culinary powders, like Tumerik, Ginger, Cinnamon, etc. I lost a bid oversighte for totals amounts.

Only one side-effect in 8 years, when I took more than 60 mg/d of zinc and got a little headache. Despite such unbelievable amounts in average of 8 years - I'm still deficient in many of them tested in serum, whole blood and hair.

Main benefit after 6 years (beside numerous in respect to increased energy, recovery from infection, pains, functional lab markers in most cases improved, etc.) was the revoking of a 60% government certified walking-disability.

Without restriction, I respect everyone's right to put whatever into one's mouth, after evaluating risks and benefits (except with my mother, but I'm working on that). I expect the same right for myself.

There is really nothing further to add to that side-thought in a threat about 'What constitutes reliable evidence".

For my mother her Docs assurance is all needed.
While for me, after evaluating all available evidence - observational, anecdotal, in-vitro, animal, RCTs, meta-analysis - and the benefits indeed experienced, is what assures me.

Please lets respect that. We can relate how our demands on security from evidence are utterly different. But as in the example with my mother, I have no right to fight, what I would consider for myself irresponsible behavior. Or it only leads to fruitless arguments. As we already have seen happening in this thread.

 

[pamojja]

But this is not because a hospital stay is as risky as going to war. It's because vastly more UK citizens will be an inpatient in hospital at some point in their lives than the number of UK citizens who will become military personnel in Iraq/Afghanistan.

Please read the small caption in the right corner of that first graph again, to assure yourself that it also includes increase of risk per exposure. If you still disbelieve, thats fine with me too. But also be aware, that all these numbers are only estimates, because medical- or drug injuries are never reported on death-certificates. To find more about, read for example this recent study (and please evaluate it for yourself):

http://www.bmj.com/content/353/bmj.i2139

There is a whole wikipedia page on medical error:

https://en.wikipedia.org/wiki/Medical_error
https://en.wikipedia.org/wiki/Medical_error
Just for general interest, why we are dying the most in absolute numbers all over the world:

http://www.worldlifeexpectancy.com/world-rankings-total-deaths
(of which, I for example, have already been diagnosed with 6 of the 10 most common deadly diseases - still typing... )

And the above bubble chart updated for the whole EU, with some almost unbelievable differences to the UK:

http://anhinternational.org/2012/08...htning-more-dangerous-than-herbs-or-vitamins/
http://anhinternational.org/2012/08...htning-more-dangerous-than-herbs-or-vitamins/
Never believe anything without double-checking. If a treatment doesn't work for you, it doesn't work for you. If it works, you'll know too. If you meet someone for whom it has been the exact opposite, it has been the exact opposite. One rare orthopedic once said: 'The one who heals is right.' I still disagree, it's not about being right. It's about your ability to live happily with your decision. Which could always turn out either way.

 

[Laelia]

Please read the small caption in the right corner of that first graph again, to assure yourself that it also includes increase of risk per exposure.

Sorry pamojja, you're right, it does say that it includes the increase of risk per exposure. I guess I got confused because it also says in thst caption 'Medical injury poses greater risk to society simply because vastly more citizens are exposed to that risk and hence die'. But if you're correct then these statistics are rather worrying!

 

[pamojja]

But if you're correct then these statistics are rather worrying!

Again, for me that isn't something to be correct about! Honestly, I hope with all my heard to be proven squarely wrong, for example with my worry for my mother. She in fact has started to experiences many of the side-effects those drugs could bring. But through taking them for that many, many years, she can't other than think that's old age. And just waits for her end. It's so tragic.

 

[Laelia]

I've learned something new with this discussion. Despite RCTs being considered the pinnacle of reliable evidence for effectiveness and safety, it can't tell a thing about how applying it on the population level (which standard of care claims would try) - would turn out more riskier than going to war..

Is this because RCTs can't provide us with reliable data about the risk of adverse pharmaceutical drug reactions?

Never believe anything without double-checking. If a treatment doesn't work for you, it doesn't work for you. If it works, you'll know too.

Are you sure about this? A lot of people seem to be saying that it's not possible to know if a treatment is working for you (because, for example, you might have improved anyway without the treatment)?

Honestly, I hope with all my heard to be proven squarely wrong, for example with my worry for my mother. She in fact has started to experiences many of the side-effects those drugs could bring. But through taking them for that many, many years, she can't other than think that's old age. And just waits for her end. It's so tragic.

So sorry to hear this about your mother pamojja. I hope you will be proven wrong too.

After my risk/benefits analysis of available treatments, I googled for the most occurring successful case reports in alternative medicine for my condition, and still started precautionary with a dose much below what's recommended, gradually increasing. Well, after about 1 year, reaching the therapeutic dose, I could walk 1 hour again (up from initially 300-400 meters), 2 hrs the second, and with the 6th year disease-specific pains where now more.

I'm painfully aware that's not as it turns out for many here, and it might not work form me again with ME/CFS.

If it's not too much trouble please keep us updated on how you are doing. I do hope you will find something that helps with your ME/CFS as well. I wish you the best of luck with this.

 

[pamojja]

So sorry to hear this about your mother pamojja. I hope you will be proven wrong too.

Thanks.

I've learned something new with this discussion. Despite RCTs being considered the pinnacle of reliable evidence for effectiveness and safety, it can't tell a thing about how applying it on the population level (which standard of care claims would try) - would turn out more riskier than going to war..

Is this because RCTs can't provide us with reliable data about the risk of adverse pharmaceutical drug reactions?

RCTs, along with observation, in-vitro, animal and case-studies, can tell something about adverse reactions accumulating during the study duration-time under unnatural, ideal conditions.

At the population level, with various unaccounted preconditions, polypharmacies - this predictive power becomes again increasingly unreliable due to untested confounders. And tell virtually nothing beyond the usually 5-years tested. In many cases much shorter.

Never believe anything without double-checking. If a treatment doesn't work for you, it doesn't work for you. If it works, you'll know too.

Are you sure about this? A lot of people seem to be saying that it's not possible to know if a treatment is working for you (because, for example, you might have improved anyway without the treatment)?

I'm sure about the double-checking. With knowing if a treatment works or not.. it depends.

Don't mean acute conditions, like cuts, a headaches, a fever, or infections which would run it's course and heal themselves anyway.

I talk about chronic conditions ending most likely in deterioration, are considered non-reversible by standard of care, and usually end with death. CVDs or cancers are the most common ones. If one finds such with some treatments, despite the predictions of MDs, does get better over years, something in a myriad of synergies of all co-dependent causes - the treatment being one of them - does definitely work. If not, then not. In your particular case with your unique preconditions.

So in my understanding of reality it's never a 'one magic pill' treatment which works, but that with as many (in science disturbing) as possible effective confounders. Placebo being probably the most strongest (according to RCTs), and nocebo the least desired.

But then, for me with already a remission in one such deathly disease, it doesn't mean - as many seem to expect from evidence based medicine on this forum - in being cured once and for all. But at one point dying with the disease, not because of it.