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What constitutes reliable evidence?

Laelia

Senior Member
Messages
243
Location
UK
I'm quite serious when suggesting this:

"Science based medicine vs evidence based medicine"

Thank you @Snow Leopard for posting these videos. I watched the first lecture which was excellent. Anyone else wanting to learn more about evidence based medicine should watch this too. I plan to watch the other lecture you posted another time and perhaps some other lectures from the series as well.
 

Laelia

Senior Member
Messages
243
Location
UK
While your study says that the placebo effect is not as plentiful and I don't know whether this is true or false, it does admit that it does indeed exist. I find that problematic.

Hi @barbc56

The series of lectures that Snow Leopard posted is made by the Science Based Medicine people whose website you referred me to. In the second lecture they mentioned this study so they seem to think it is a significant one. The key finding from the study is that placebos have no effect on any objective measurements, only subjective ones. This is important and well worth remembering. :)
 
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Laelia

Senior Member
Messages
243
Location
UK
The following was a statement from the second lecture of the Science Based Medicine lecture series:

“There is really no such thing as alternative medicine. There are only treatments that have been tested and proven to work and treatments that haven’t. If a treatment had been proven to work, we wouldn't call it alternative, we would just call it medicine."

This was a comment made by @Jonathan Edwards on the MAIMES thread:

"Generally speaking doctors will agree pretty unanimously on whether or not there is reliable evidence - unless of course they have a vested interest in the treatment!"

It is my opinion that both of these statements are misleading, for the following reasons:
  1. The first statement suggests that treatments used in conventional medicine have been proven to work. This is not the case. I only need mention Graded Exercise Therapy (GET) here to illustrate my point.

  2. The first statement also suggests that there is a clear-cut definition of what evidence is sufficient to ‘prove’ that a treatment is effective. There is not.

  3. Jonathan’s statement suggests that there is a clear-cut definition of what constitutes reliable evidence. There is not. There is a spectrum of reliability and determining where evidence lies on the spectrum is nuanced and relies on the subjective interpretation of many studies.
 

arewenearlythereyet

Senior Member
Messages
1,478
Personally, I find that comment a gross exaggeration having been treated by Dr Mhill in the past on several occasions. Have you had a bad personal experience ?

Pam
My bad experience was really just from wasting time reading a lot of "tripe" on her website. (see my earlier comments). On this basis I took the decision not to waste my money on any treatment from her.
 

Laelia

Senior Member
Messages
243
Location
UK
Personally, I find that comment a gross exaggeration having been treated by Dr Mhill in the past on several occasions. Have you had a bad personal experience ?

Pam

My bad experience was really just from wasting time reading a lot of "tripe" on her website. (see my earlier comments). On this basis I took the decision

I have set up another thread:

http://forums.phoenixrising.me/index.php?threads/whats-your-opinion-of-dr-myhill.50933/

Please feel free to continue your disussion over there. ;)
 

pamojja

Senior Member
Messages
2,398
Location
Austria
I'm quite serious when suggesting this:

"Science based medicine vs evidence based medicine"

Yesterday watched the first video only. And it did remind my to always check the science again, the data and methodology itself, to see if science is really settled in one point.

For example, she states that the science on a correlation between autism and vaccinations has clear evidence that there is none. Well, unless one ignores the whistle-blower of the CDC, which admitted that a clear link between vaccine and autism in African-Americans has been doctored out from a final study by the CDC. (which by the way, owns patents for vaccinations)

Or the clear evidence of smoking causing lung-cancer. Because no double placebo-controlled study can ever be made to prove, there still would be enough in vitro, animal studies and epistemological studies to prove it. - Only that most animal studies showed that animals given cigarette smoke 'round the clock outlived the control animals.

I wished science would prove things clearly. But as it is, it's used to prob up one's pet theory, a consensus, or a standard of care by neglecting conflicting results. Each has to get into learning how to read studies, understand their weaknesses, and make up their own mind about the reliability of each. And then the politics of it. For example of the number of RCTs showing the effectiveness of anti-depressives, there are almost the same number of RCTs showing negative effects - but have simply never been published (found out with a freedom of information request).

When I got sick with a serious PAD years ago I came across one forum-thread which changed my view about scientific evidence versus consensus forever. It thought me the basics - even though I still lean toward the irrational consensus vs. the obvious conflicting scientific evidence, at least in that one question. For which it was applied in that discussion:

Smoking is good for you!

If anyone trained in science here can prove - and not by consensus (as forum moderators there have chosen to) - that science isn't still conflicting in this one point. I would be forever grateful for that. I couldn't, though I really wished for. At least not with the utmost rigor looking at scientific evidence I learned there.
 

Basilico

Florida
Messages
948
Desperation and money making opportunities for the more corrupt go hand in hand sadly.

This, unfortunately, is as the heart of the problem in my opinion, and why CFS/ME patients have been so taken advantage of.

My husband and I have seen several so-called "CFS specialists" who all claimed to have "the cure" and assured us that if we followed their protocols we would be much improved. Spoiler alert: we didn't improve.

I fully support practitioners thinking out of the box and being willing to do some experimentation to find something that works for their patients (Goldstein style) as long as patients completely understand what the risks are.

The problem that arises is that with a poorly understood illness like CFS/ME, all sorts of doctors/alternative practitioners come out of the woodwork making claims that they have the answer...Myhill or any of the other CFS doctors can claim that certain treatments work for a majority of their patients (as their evidence), but patients have no way of even knowing whether this is true.

For example, a "CFS specialist" I saw in Florida claimed to have a 98% success rate treating with Valtrex and some various supplements. As soon as I heard this statistic, I knew it was bogus. Anyone with a 98% success rate would be FAMOUS, their name would be all over this board. And, in fact, the treatment did nothing for either of us and we stopped going. Yet, I bet his success rate is still 98%.

If a doctor claims that a treatment doesn't have any controlled trials backing it up, but it seems to work for his/her other CFS patients, what do you believe? They certainly can't give you specific names of patients to verify what they are saying is true, so you are really put in the position of believing unverified claims that could either be legit or completely made up.

Since most people are so desperate, I think many of these specialists are given a free pass and no kind of "evidence" is ever demanded of them because we know that the evidence doesn't exist and we are willing to accept whatever treatments they dish out if there is even a sliver of a chance of getting better. That kind of situation is ripe for exploitation. Yet, if we only act when there is RCT evidence, then we'll basically never act.
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,024
“There is really no such thing as alternative medicine. There are only treatments that have been tested and proven to work and treatments that haven’t. If a treatment had been proven to work, we wouldn't call it alternative, we would just call it medicine."
Who is it that said this? Ive read this quote somewhere before and i agree with it, but i'm just wondering the source, google doesn't have a clue (which is strange).
 

RogerBlack

Senior Member
Messages
902
If a doctor claims that a treatment doesn't have any controlled trials backing it up, but it seems to work for his/her other CFS patients, what do you believe? They certainly can't give you specific names of patients to verify what they are saying is true, so you are really put in the position of believing unverified claims that could either be legit or completely made up.

How do you select your patients, do you verify they meet the CDC/...
What metrics are you using for improvement?
How systematically did you survey the patients?
Did you follow them up post-treatment?

I note that an un-followed up treatment that kills the sick patients would look quite good.

If they do not have a formal system counting patients and using specific metrics, with a written protocol, I would almost wholly disregard it.

Even if the doctor is being honest, it is way, way easy for them to mislead themselves.
 

Laelia

Senior Member
Messages
243
Location
UK
Who is it that said this? Ive read this quote somewhere before and i agree with it, but i'm just wondering the source, google doesn't have a clue (which is strange).

The lady in the video just says it likes it's her own words.


Yes, but Richard Dawkins' quote is subtlety different from the one in the video.

"There is no alternative medicine. There is only medicine that works and medicine that doesn't work."

I actually think Dawkins' quote is even more misleading as it suggests that all alternative medicine is known to be ineffective (which is obviously not the case). I wonder if that's why the quote was modified for the video.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
The lady in the video just says it likes it's her own words.

Yes, but Richard Dawkins' quote is subtlety different from the one in the video.

"There is no alternative medicine. There is only medicine that works and medicine that doesn't work."

I actually think Dawkins' quote is even more misleading as it suggests that all alternative medicine is known to be ineffective (which is obviously not the case). I wonder if that's why the quote was modified for the video.

This is not a 'quote'. It is what I and most of my colleagues have been saying to my students for twenty five years at least. Dawkins has just paraphrased what everyone else has been saying (what he tends to do). Dr Hall's version is the usual one.
 

Laelia

Senior Member
Messages
243
Location
UK
This is not a 'quote'. It is what I and most of my colleagues have been saying to my students for twenty five years at least. Dawkins has just paraphrased what everyone else has been saying (what he tends to do). Dr Hall's version is the usual one.

Ah well it looks like Wikipedia got it wrong in that case.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
The following was a statement from the second lecture of the Science Based Medicine lecture series:

“There is really no such thing as alternative medicine. There are only treatments that have been tested and proven to work and treatments that haven’t. If a treatment had been proven to work, we wouldn't call it alternative, we would just call it medicine."

This was a comment made by @Jonathan Edwards on the MAIMES thread:

"Generally speaking doctors will agree pretty unanimously on whether or not there is reliable evidence - unless of course they have a vested interest in the treatment!"

It is my opinion that both of these statements are misleading, for the following reasons:
  1. The first statement suggests that treatments used in conventional medicine have been proven to work. This is not the case. I only need mention Graded Exercise Therapy (GET) here to illustrate my point.

  2. The first statement also suggests that there is a clear-cut definition of what evidence is sufficient to ‘prove’ that a treatment is effective. There is not.

  3. Jonathan’s statement suggests that there is a clear-cut definition of what constitutes reliable evidence. There is not. There is a spectrum of reliability and determining where evidence lies on the spectrum is nuanced and relies on the subjective interpretation of many studies.

Dear Laelia,
If you read carefully my posts and listened carefully to Dr Hall you would see that these statements are not misleading because they do not suggests what you suggest they would suggest. In fact Dr Hall and I have explicitly indicated that we do not suggest what you are suggesting we suggest.

Dr Hall says nothing about conventional medicine precisely because she has made it clear she does not see any distinction between 'conventional' and 'alternative' medicine. She is only interested in the evidence. She did a piece agreeing that GET fell into the unproven category if I remember rightly. She says nothing about there being a clear cut definition of sufficient evidence.

I have said quite specifically that there is no clear cut definition of what constitutes reliable evidence; on the contrary I have defined it as what a reasonably intelligent person without vested interest in possession of all relevant facts of the case would consider reliable - precisely because it is so hard to give a recipe. And of course there is a spectrum of reliability for individual pieces of evidence. I think you are conflating reliability of a piece of evidence with reliability of the body of available evidence for a treatment's efficacy.

What I said is that in practice doctors almost always agree whether or not the total evidence available for a treatment is reliable enough to assume it works (where there is no vested interest). For all the standard treatments in rheumatoid arthritis there is agreement that the evidence is reliable. For a number of fringe treatments there is pretty unanimous agreement that the evidence is not reliable. That has nothing to do with whether there is a cut off for reliability of individual studies that can be applied across the board. Assessment of individual studies needs to be nuanced.

I don't know what 'subjective interpretation' means though. It sounds a bit like the 'clinical nose' that people like the doctor played by James Robertson Justice in Doctor in the House were supposed to have in the 1960s. You don't want an airline pilot who flies your plane by his 'aerial nose' and similarly you don't want a doctor who works that way. We have grown out of that.

To come back to reality, we are discussing this in the context of treatments for ME where there is pretty unanimous agreement amongst doctors that they are not supported by reliable evidence. Even doctors who prescribe anti-viral will tend to agree that the evidence so far is not reliable. Those that differ probably have vested interests. The reality is pretty black and white. None of this discussion is ever going to raise current treatments provided by private practitioners for ME/CFS to the status of 'has reliable evidence for efficacy', not even rituximab. I see little point in distracting the debate from this simple fact by raising straw men about what people seem to be suggesting when if you read carefully they have said they are not!!
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
ok then let's get pernickety. Wikepedia says they are quoting Richard Dawkins in A Devil's Chaplain from 2003. In fact they are quoting from Dawkins' foreward to "Snake Oil and other Preoccupations" by John Diamond (2001), this foreward being included in the collection of writings that is A Devil's Chaplain. I don't have my copy of John Diamond's book any more (but remember thoroughly enjoying reading it), but I do have A Devil's Chaplain to hand, where Dawkins writes:

If a healing technique is demonstrated to have curative properties in properly controlled double-blind trials, it ceases to be alternative. It simply, as Diamond explains, becomes medicine.

So actually Wikepedia is quoting Richard Dawkins quoting John Diamond. I'm not aware that any of these people are claiming to make a great original statement, they are merely espousing/repeating a viewpoint held by many others (including @Jonathan Edwards and his colleagues, and hopefully their students).

Wikepedia just lists people who have made similar quotes along these lines - who made them and what they said.

Does the word "quote" imply a claim to be the original source? Maybe we should start a new thread on that.