What constitutes reliable evidence?

[Undisclosed]

Hi @Kina,

So are you saying that I should just accept what the scientific guidelines say are true without thinking it through and trying to understand it for myself? Maybe in that case I should also just accept that the NICE guidelines for the treatment of ME/CFS are also true?

Will probably have more thoughts to add later...

Guidelines about what constitutes reliable evidence are not the same as the NICE guidelines. I think you can trust the information related to reliability re: anecdotal evidence versus controlled studies etc. If you look at the NICE guidelines related to CFS, you can discern that it is not based on reliable evidence (Pacing and GET). I agree with the following post. Maybe read the thread and apply some logic to your posts rather than just disagreeing without thinking through what you are saying. You asked what constitutes reliable evidence, you have been give some really good answers and I believe you have been provided a good basis for understanding. You just seem to want to twist words and argue so I am out too.

From my perspective @Laelia you have everything you need to understand written in this thread by a number of people who are genuinely trying to help you understand the basics for scientific research and the difference between GPs prescribing stuff. It does come across very strongly that you are twisting words around and disagreeing with every single post or opinion that is made. Perhaps re- read through the thread and ask very specific questions to help you understand if that is genuinely your intention rather than a series of open ended disagreements?. I honestly can't grasp,what's not to understand? This will be my last post here since I feel I've added all I need to and this thread appears to be going around in ever decreasing circles.

 

[Laelia]

You just seem to want to twist words and argue

I can assure you that it is not my intention to 'twist words'. I am trying to use words in such a way that will bring greater clarity to this discussion. And I really can't understand why there should be a problem with me or anyone raising an argument or questioning things.

Maybe read the thread and apply some logic to your posts

If my arguments seem illogical or incoherent at times it's because I'm struggling through brain fog to be a part of this discussion. However, I really don't think it's fair to suggest that all (or even many) of my posts on here have been illogical.

so I am out too

That's fine Kina. As I said to the others, if I quote you again on this thread I will do it without using the quote feature. I am doing this out of respect for your decision not to participate any further in this thread.

 

[Laelia]

I am not trying to prove that the 'establishment' view of reliable evidence is wrong. I still don't understand what the 'establishment' view of reliable evidence is. So how can I possibly be trying to prove that it is wrong?

Science is built on hierarchies.

I have gone back and read through this and the previous thread in order try and understand what the establishment view of reliable evidence is. @barbc56 very helpfully provided an image of a pyramid to describe the levels of evidence in their increasing order. However this pyramid does not explain which of the levels can provide us with reliable evidence. A number of you have said that you don't think that anecdotal evidence can ever be reliable. Can I safely assume then that this is the establishment view of anecdotal evidence? What about the other lower and middle levels of the pyramid which I don't think have been mentioned in this thread? Is it the establishment view that the none of these can provide reliable evidence either?

 

[Laelia]

Kina: "I think there is a difference between 'evidence' and 'information'. For example, there is a lot of information on Myhill's website which she backs up with a research study or two. When does the information on her website become evidence?"

It might be helpul at this point to provide Wikipedia's definition of scientific evidence which I'm sure is accurate:

Scientific evidence is evidence which serves to either support or counter a scientific theory or hypothesis.

Kina: "I think you can trust the information related to reliability re: anecdotal evidence versus controlled studies etc."

No I don't think that you can trust this information. The PACE study is a case in point. In my opinion the PACE trial is much less reliable than anecdotes from ME patients about the efficacy of GET.

Kina: "Maybe a better question is 'What constitutes reliable information'."

Kina: "When members here on PR post anecdotes on how a supplement works for them, I don't ever see that as evidence of anything, I see it as providing information about the supplement."

I'm sorry but I think Kina has got this all wrong. If anecdotes didn't provide evidence of anything then there would be no point whatsoever in exchanging them. I think there is a good reason the term 'anecdotal evidence' is frequently used. I don't recall ever hearing the term 'anecdotal information'.

 

[barbc56]

I'm out!

 

[pamojja]

I'm still in. Lealia, you probably interested in this perspective:

Double Blind Studies: Are They Still Valid Or Corrupted?

excerpts: ..
The purpose of this article is to alert and remind doctors and patients alike to read the fine print carefully. Everyone has to adjust to to this new reality. What is described below is what is taking place now. I have noticed Doctors overall are perhaps slower than informed patients to make this adjustment. Understandably so, since we doctors have memories of the good information a well done double blind study can offer.


There are 3 main avenues with which the original intent of the double blind study has been corrupted into a simple search for data to use for selling a product.

1. First step in the corruption process began when a company that stands to profit from a positive outcome was given total control by the FDA of the studies to evaluate the effect and safety...

2. Method of corruption #2: The FDA now accepts the ability of a drug to create a positive change in a test result in a patients as the principal criteria to measure effectiveness instead of changes in a patient herself/himself....

3. The third and final way the double blind studies have been corrupted is probably the least known but most pernicious of the three. This is the proverbial ‘last straw” of corruption of what was a wonderful method of getting at the truth about the value of a treatment. If modern physicians or patients do not know the term Contract Research Organization, commonly abbreviated CRO, and how this type of company is used in a double blind studies we are are ill informed.

Currently, 30% of an average double blinded study is outsourced to a CRO. It is predicted that this percentage will rapidly rise to 80% in 10 years. Shouldn’t doctors and patients know this? ...

..., the results of double blind studies no longer can be automatically considered superior to patient and doctors doing critical vigorous observations on their own of the results of meds introduced into the marketplace...

Can only agree with the final conclusion of that article:

With that info in hand, many of us begin to become our own “unbiased investigators for truth” in medicine.

Just as I already wrote. Each study has to be verified by oneself, if the conclusions are justified by the data.

 

[Undisclosed]

Kina: "I think there is a difference between 'evidence' and 'information'. For example, there is a lot of information on Myhill's website which she backs up with a research study or two. When does the information on her website become evidence?"

I wish you would learn how to quote properly. Using italics is very difficult to read for some of us. I know I said I was done with this thread but since you decided to discuss what I said, I will add my two cents or tuppence and then be done.

It might be helpul at this point to provide Wikipedia's definition of scientific evidence which I'm sure is accurate:


Scientific evidence is evidence which serves to either support or counter a scientific theory or hypothesis.

Wikipedia is no where near accurate in many cases. Have you ever seen the ME/CFS page -- it's a pile of lying psychobabble and totally inaccurate. You can't always trust the Wikipedia.

Is it not obvious to you that 'scientific evidence' either supports of refutes a scientific theory or hypothesis. Just like legal evidence is used to either support or refute legal theories etc.

But what constitutes reliable evidence? You have been given an example of a hierarchy of evidence and good information by many.

Kina: "I think you can trust the information related to reliability re: anecdotal evidence versus controlled studies etc."

No I don't think that you can trust this information. The PACE study is a case in point. In my opinion the PACE trial is much less reliable than anecdotes from ME patients about the efficacy of GET.

I think we all agree that the PACE trial is not reliable evidence due to design problems, researcher bias, poor subject selection and so on. In general, what is accepted by any serious scientist or anybody who understands the scientific process is that anecdotal evidence is the weakest form of scientific evidence. In other words, the least reliable.

Your failure to understand this is astounding. You can talk about one study but it's not just about one study, we are talking about what constitutes reliable evidence which is accepted worldwide by scientists. Many studies get published that do not constitute reliable evidence. When one questions these studies, the truth comes out. One can question studies by asking questions about the quality and reliability of evidence presented.

Kina: "Maybe a better question is 'What constitutes reliable information'."

Kina: "When members here on PR post anecdotes on how a supplement works for them, I don't ever see that as evidence of anything, I see it as providing information about the supplement."

I'm sorry but I think Kina has got this all wrong. If anecdotes didn't provide evidence of anything then there would be no point whatsoever in exchanging them. I think there is a good reason the term 'anecdotal evidence' is frequently used. I don't recall ever hearing the term 'anecdotal information'.

I didn't ever say that anecdotes don't provide evidence of anything. Perfect example of you twisting words. What I said was that anecdotal evidence in scientific research is the poorest type of evidence. Why didn't you fully quote me.

What I said was this, maybe putting it in red might help you.

Well, in research/science anecdotes can be seen as providing useful information. Researchers use anecdotal evidence to suggest new hypotheses but never use anecdotal evidence as validating evidence.

As far as 'anecdotal information' -- I have heard that term used -- information coming from anecdotes.

 

[Undisclosed]

You might want to take a course to get a basic handle on all this stuff. The following is free and self-paced.

https://www.edx.org/course/science-everyday-thinking-uqx-think101x-4

What you'll learn

• The scientific method and its use in everyday life
• Tools for improving your everyday thinking
• Tips and tricks for changing people’s minds
• Techniques for learning and retaining information longer
• How to distinguish fact from fiction

 

[Laelia]

I wish you would learn how to quote properly. Using italics is very difficult to read for some of us.

Sorry! I won't use italics again!

Have you ever seen the ME/CFS page -- it's a pile of lying psychobabble and totally inaccurate. You can't always trust the Wikipedia.

I wasn't suggesting that you can always trust Wikipedia! You must think I'm a complete idiot to think that this what I was suggesting! Ha! I was simply suggesting that Wikipedia's definition of scientific evidence was probably accurate.

Is it not obvious to you that 'scientific evidence' either supports of refutes a scientific theory or hypothesis.

Yes it's obvious to me! But from what you were saying I thought it was not obvious to you! Perhaps that was just a misunderstanding though.

Your failure to understand this is astounding.

Is it really astounding? Even taking into account the fact that I am very sick and brain fogged?

I didn't ever say that anecdotes don't provide evidence of anything.

But you definitely did imply this:

When members here on PR post anecdotes on how a supplement works for them, I don't ever see that as evidence of anything, I see it as providing information about the supplement.

Perfect example of you twisting words.

Or maybe it was a perfect example of me misunderstanding your words? It would be really nice if people could stop accusing me of twisting words and malicious intentions. I keep trying to explain that this is not the case.

 

[Laelia]

You might want to take a course to get a basic handle on all this stuff. The following is free and self-paced.

https://www.edx.org/course/science-everyday-thinking-uqx-think101x-4

What you'll learn

• The scientific method and its use in everyday life
• Tools for improving your everyday thinking
• Tips and tricks for changing people’s minds
• Techniques for learning and retaining information longer
• How to distinguish fact from fiction

Thanks for this Kina, I might take a look at it.

 

[Laelia]

I think I made the mistake of trying to participate in this discussion at a time when I am too sick and brain fogged for it.

I plan to go away and do more study on this using the resources some of you have suggested. I won't come back to this thread until the brain fog clears, which I hope it might eventually (fingers crossed)...

Thank you everyone for your contributions to the thread, you have all been very helpful. I'm sure this discussion has been helpful to other people on here too, not just me.

 

[Laelia]

I've made a start on the study which I said I was going to do. I'm not here to express any opinions on anything at the moment. I just want to share a few things from the second Science Based Medicine lecture which other people might find interesting.

This is what one of the founders of sciencebasedmedicine.org says about complementary and alternative medicine (CAM):

“CAM is a political ideological entity, not a scientific one. It is an artificial category created for the purpose of promoting a set of dubious, untested or fraudulent health practices. It is an example of the (successful) use of language as a propaganda tool.” Steven Novella

This is one of the slides from the second lecture:

Why is CAM suddenly so popular?

• Science has become so successful we get frustrated when we can't cure everything
• We are healthier and now we want perfect health
• We live longer and we face different threats
• Worried well have the luxury of worrying
• Everyday life has been pathologized
• We have invented imaginary diseases

And here is another:

The big reason people turn to CAM

• Public demand for CAM is due to only one factor: The deplorable widespread lack of critical thinking skills

 

[Laelia]

I think this might be the article by Dr Hall (who presents the Science Based Medicine video lectures) that Jonathan was referring to earlier in this thread:

https://sciencebasedmedicine.org/tr...cise-therapy-how-the-pace-trial-got-it-wrong/

However, people should also be aware that this was what Dr Hall wrote about ME/CFS as recently as 2015:

The same constellation of symptoms might be variously diagnosed by different mainstream and alternative medical providers as CFS, fibromyalgia, chronic Lyme disease, Gulf War syndrome, post-traumatic stress disorder (PTSD), multiple chemical sensitivity, environmental sensitivity, candidiasis, and any number of fake diseases. However the symptoms start, they quickly become complicated by deconditioning. As patients exercise less, they become less able to exercise. Muscles atrophy with disuse, endurance declines. Confirmation bias sets in. The sick role becomes a self-fulfilling prophecy. Whatever the underlying pathology, the degree of suffering is affected by psychological factors. It is devilishly difficult to sort out the physical from the psychological and to know how best to help these sufferers. Current treatments are not very effective.

https://sciencebasedmedicine.org/iom-recommends-replacing-cfs-with-seid/

Discussed here: http://forums.phoenixrising.me/inde...iom-recommends-replacing-cfs-with-seid.35963/

Dr Hall also wrote this article about the use of Rituximab in CFS:
https://sciencebasedmedicine.org/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/

It received a lot of criticism on here: http://forums.phoenixrising.me/inde...ab-revisited-in-science-based-medicine.42499/

 

[barbc56]

I really debated whether I should post this or not however, I don't think it's fair to leave out one of Dr. Hall's latest blog.

https://sciencebasedmedicine.org/tr...cise-therapy-how-the-pace-trial-got-it-wrong/

A thread I started.

http://forums.phoenixrising.me/inde...ed-medicine-blog-criticizes-pace-trial.50497/

What makes me hopeful is that as more evidence is discovered, a true scientist has no problem adjusting a theory. Science evolves..

 

[Laelia]

I really debated whether I should post this or not however, I don't think it's fair to leave out one of Dr. Hall's latest blog.

I hadn't left out this blog, it was the first article of Dr Hall’s that I mentioned in my previous post. But thank you for adding the thread to the discussion about this article, I hadn't found that earlier.

 

[TreePerson]

I think I made the mistake of trying to participate in this discussion at a time when I am too sick and brain fogged for it.

I plan to go away and do more study on this using the resources some of you have suggested. I won't come back to this thread until the brain fog clears, which I hope it might eventually (fingers crossed)...

Thank you everyone for your contributions to the thread, you have all been very helpful. I'm sure this discussion has been helpful to other people on here too, not just me.

Don't apologise. In my opinion you've been horribly bullied. Some people on here are extremely unnecessarily rude when they disagree. Appallingly patronising and aggressive. And you have been very tolerant and polite. I'm out too for obvious reasons. ☺️

 

[Laelia]

Don't apologise. In my opinion you've been horribly bullied. Some people on here are extremely unnecessarily rude when they disagree. Appallingly patronising and aggressive. And you have been very tolerant and polite. I'm out too for obvious reasons. ☺️

Awe thanks @TreePerson. ☺ It's understandable that tensions sometimes rise on here given how sick some people are and how long they've suffered for. However I think some people need to be more careful how they communicate on these forums. What we don't want to create is an atmosphere where people are afraid to express their opinions for fear of being belittled. This is a serious problem in my opinion.

 

[Laelia]

Jonathan Edwards (earlier in this thread):

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.

This is not correct. I have listened very carefully to a number of Dr Hall’s lectures and she has explicitly indicated that she does see a distinction between 'conventional' and 'alternative' medicine. This is what she says towards the end of the 10th lecture:

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.

[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]

 

[barbc56]

Jonathan Edwards (earlier in this thread):
This is not correct. I have listened very carefully to a number of Dr Hall’s lectures and she has explicitly indicated that she does see a distinction between 'conventional' and 'alternative' medicine. This is what she says towards the end of the 10th lecture.

Dr. Hall is correct. Conventional medicine at least has some plausibility and hopefully studies to go along with it. That doesn't mean there aren't risks but the benefits usually outweigh the risks. Nothing is guaranteed to be 100% effective or safe.

Alternative medicine, which is different, may have some theories that will turn out to be correct but until science shows this, it's still alternative and the harm may outweigh the risks. But we don't know as they haven't been scientifically studied. Some theories of alternative treatments don't even make sense as far as how the human body works.

Dr. Edwards is saying the same thing only using different words.. Medicine is defined by the evidence behind it.

There's a saying, "Do you know what alternative medicine that has been proven called? Medicine".

People still have a right to choose.

I hadn't left out this blog, it was the first article of Dr Hall’s that I mentioned in my previous post. But thank you for adding the thread to the discussion about this article, I hadn't found that earlier.

So why did you choose to quote the negative URLs, but not the one about the PACE trial which you found later? This was posted verbatim in two threads.

There are nine pages here where members have been generous enough to take time to explain these concepts. Why don't you just agree to disagree?

IMHO, this feels like goading others to respond for the sake of inviting discord. I have responded too hastily to many posts and that's my bad.

In the last few days, i have decide to ignored several threads. Something I don't think Ive done before.

It's really been quite therapeutic.

 

[Laelia]

Dr. Hall is correct. Conventional medicine at least has some plausibility and hopefully studies to go along with it. That doesn't mean there aren't risks but the benefits usually outweigh the risks. Nothing is guaranteed to be 100% effective or safe.

You're right @barbc56, of course nothing is guaranteed to be 100% effective or safe in medicine. I made a mistake in my previous post which I have gone back to explain in the edit at the bottom of it. What I was trying to say is is that Dr Hall is misguided in her belief that conventional medicine is always as efficacious and safe as it's made out to be. Apologies for the confusion.

There's a saying, "Do you know what alternative medicine that has been proven called? Medicine".

Yes, this was discussed earlier in this thread ☺

So why did you choose to quote the negative URLs, but not the one about the PACE trial which you found later?

Maybe in the interest of fairness I should have quoted something from Dr Hall’s PACE article too. So I shall do that now:

Conclusion: A flawed study with lessons to be learned

Studies like the PACE trial can have a strong impact on patient care, and flawed studies can result in harm to patients. Conventional peer review is obviously not enough: the effective peer review in this case came after publication. Numerous flaws were found that should have been addressed before publication. Critics called for the study to be retracted; so far, it hasn’t been. This unfortunate episode can serve as a wake-up call and it points out the value of freely sharing raw data with other researchers. Good scientists want to know if they are wrong. They want to have their work scrutinized and should be willing to share their data without the requesters having to resort to a court order.

Is that better? ☺ This was a great blog that Dr Hall wrote.

IMHO, this feels like goading others to respond for the sake of inviting discord.

I'm very sorry if that's the way it feels to you. It is not my intention to goad anyone to respond, I just want to be able to express my opinions and point out other people's mistakes as I hope others will point out my mistakes. I think this is how good science is supposed to work.

There are nine pages here where members have been generous enough to take time to explain these concepts. Why don't you just agree to disagree?

I feel like I've barely even touched the surface of this subject so expect more disagreements to come, either on here or on other threads. I will try my hardest to express my disagreements in a thoughtful manner but please feel free to ignore my comments if they are causing you a lot of stress. Nothing on here is worth getting stressed out over, your health is far more important. ☺

Peace and love to you and everyone.