A proposal for ME Action: a commitment to evidence-based medicine

I don't think the subjective/objective dichotomy holds up well and that's why I felt like offering an alternative.
Rather than the idea that anyone who critiques objectivity is saying "everything is subjective" (which would be solipsistic mental masturbation) I think some would say that perspectivism is the only solution to that dichotomy and that the dichotomy is a very crude approximation of how we interact with reality.

 

Agreed. But that's not the same as implying that there are no scientific principles, which is verging on what what many posts are implying. It's either happening by accident or on purpose, but it is happening.

A scientific finding has a definable level/status of consensus/quality/crap-assessment. That idea has been placed in doubt. And there is a scientific method and process that determines this. Done by humans, sure. But human fallibility can't be a cop out for an unevidenced free for all.

 

Actually, this seems like a point where it's important to separate out "science" as an institution or institutions, and scientific process. Jonathan Edwards has mentioned that much of what's published in good journals (including very high impact factor ones) is crap. We saw with the pace trial that there could be a kind of consensus between scientists based not on scientific process but based on financial interests and reflexive appeals to authority.

So I don't know if you should be worried that people aren't respecting scientific principles or just think that they are trying to clarify them in the midst of the loss of credibility of many scientific "institutions"--from journals to universities to governmental medical oversight organizations.

 

Definitely not. I'm not 'upset 'with the conversation - much more than people's feelings are at stake. You're making a comparison with people who are more emotionally attached to their opinion than reasoned evidence - a false equivalence.

I'm worried about what is at stake and being undermined. And what has been undermined can even have an estimated number of ruined lives and lacking pharmaceutical dollars attached to it, if estimated empirically. This problem is that critical.

But again we come back to the same point. What is the point? That there is crap out there so we should not care and just allow crap ourselves? There is the essence of my entire concern. Still. In circles......

 

I'm bailing out. I genuinely feel like I am losing a discussion that shouldn't even exist to be lost.

I have been successfully distracted into submission...

So I'll leave it at that. I am perturbed.

 

They're part of it in the sense that they tell us, that, maybe, there might be something of interest here. That's all. And all this should be verified with scientific tools.

I've seen hundreds of these theories proposed for ME, based on observation, speculation and self experiment, some completely crap, some moderately interesting, some very promising etc... but all these theories are just nothing untill proven right. PERIOD.

Untill now, none has passed the test, even some very promising ones.
So EVERYONE proposing a theory should be very humble and modest.

We should all be. Science has failed PwME up till now, but the scientific process is the only way that we can expect an understanding of this (these) disease(s).

These basic principles are all that this forum is about.
You may disagree this them.
But you cant' keep reproaching members to believe in them, when this is at the core of why we set up this place, and very publicly expressed.

 

Very much agreed. If we just went by that pyramid wed end up at the conclusion that CBT/get was the best treatment for ME as I think it's the only one that's had systematic reviews, some of them with positive results.

Also I thought that with systematic reviews , it's easy to cherry pick studies to support a viewpoint although I suppose there are ways around that problem?

And i may be thinking of A different type of study--partjcularly brain damaged today lol

 

Systematic reviews rely on quantity to some extent. So to reach the top of that pyramid with any given treatment, one has to have funding and support for many studies. If it becomes a numbers game, like that, its easy for those scientists with lots of institutional support to win it regardless of the quality of their evidence. I still think the pyramid provides some valuable guidance but is not perfect.

 

I don't think you need to be perturbed @InfiniteRubix. I don't think anything has changed on the forum or any commitment to science and reliable evidence has been lost. I suspect almost everyone here agrees with what you are saying in principle. The forum is actively influencing research programmes worldwide. Debates about what constitutes reliable evidence will go on for ever but they are a side show.

I actually think it is a mistake to talk of ideas or evidence having 'status' in terms of things like consensus. Particularly in biomedicine a lot of scientific ideas are too difficult for most people to fully grasp and so consensus is very often biased towards a dumbed-down inaccurate version. When it comes to judging reliable evidence and ideas each of us is on our own. Standardised procedures and 'evidence quality pyramids' are not the gold standards. The only gold standard is that if you sit down and think about something hard enough, making use of everything you have seen and heard, you come to a personal estimation of how reliable something is likely to be.

I think the red herring here, as Cheshire says, is the bit about observation or 'lived experience' or self-experimentation having a place in the generation of reliable ideas. Nobody doubts that these have a place. It is just that it is not the same place as evidence from controlled experimentation. Testing the reliability of an idea requires checking what would happen in another case - a controlled study. Without that there can be no causal inference, just correlation. There are of course all sorts of layers to the distinctions but in simple terms you need controls. Just recently we may have had more calls to put more weight on uncontrolled observations but I think the discussion has covered the reasons for not doing so.

 

Please forgive me for spelling errors, I am typing this fire voice control dictate and I can't really go back and edit a lot of it. I hope the modes don't mind having to edit my posts if it's needed.

I think experiences and how people with ME live does have its place in certain circumstances. The fact that so many people with ME have become very ill after graded exercise therapy and CBT, despite those be being the proposed treatment worldwide. it's only talking about our experiences which started the ball rolling and we are now at a place where we have so many scientists on board, understanding what's happening to us, and we may even be able to get these guidelines retracted. I was glad to see that the latest nice survey for severe ME had lots of questions about what we are going through day to day, how doctors have treated us, how are experiences were when we were diagnosed, we have never been asked these questions before! I think it's important that those of us with severe me are able to talk about these things. I'm saying this because I think these sorts of lived experiences are important, because how else would the rest of the world know what's happening or know what to do to prevent it happening again?

So I don't think the term lived experiences should have a bad name when it’s applied to these circumstances. In fact so much of the other parts of forum is about lived experiences!

However I think when it comes to treatments(and surgery), just experiences and anecdotes is not good enough. I think people with ME deserve and should ask for a lot more. When I when I became ill, I tried so many different treatments which all sounded so promising and which all had lots of blog posts, anecdotes, and People on Facebook saying how much it helped him them., and all of them left me with a lot less money and more ill. I do wish I had found this forum sooner, simply because the advice that people gave me here about pacing and resting has been more helpful than everything else combined. The only other thing that has actually helped me seeing a cardiologist, and that's because my heart rate is erratically high constantly between 100 and 140, i'm treating that has helped my energy levels a little bit.

Of course people will share anecdotes about treatment and if they want to, to try things. But because of all the issues mentioned above, including the need for controls, and how treatment expectations can make a difference, it should be remembered that these are just anecdotes, and it doesn't matter how strong the anecdotes are worded, we really do need clinical trials and at least some proper scientific data before making claims. This is especially true for vulnerable patients, of which I think I am one, seeing how very ill I was and I am, and how desperate I am to get better, and how desperately I cling on to things.

In the case of some surgeries we don't have that. We have a few surgeons who have been operating on patients for a while, but the measurements they use aunt used by the vast majority of their colleagues, they rely on test results to predict surgery which also aren’t used by their colleagues, and diagnose when other surgeons and other neurologistjust don't. And this is not just a drug that you take once, but a surgery that you live with for life, so in this case I think it's just as important to have the strongest scientific evidence. I won't say anymore because I understand the relevant threaads are closed. But it's so important for all of us, especially as I said for vulnerable and very ill people, that claims about treatments and surgeries are tested properly.

 

Also sorry I didn't sign this letter when it first came out, I know I'm too late now, but I agree with everything that was said in it.

 

This, so very much this, with some more of this on top. S4ME has a raison d'etre (my head hurts too much to find keyboard accents)

Many thanks indeed for the direct reassurance. I also agree on all fronts, especially your statement about the wider role of this site, which I would optimistically amplify. Maybe I am naïve, but I actually believe that S4ME is and will be of greater and growing importance than many people would assume This is why I cared enough to persist, as credibility is always fragile as a concept. That's merely me compounding my agreement...

I totally agree that the words status, consensus, quality or the pyramid and the like are insufficient or ambigious - they have double meanings that can be wrong or don't capture the essence entirely. That's the joy of dancing around synonyms and proxies - hoping something would finally settle the issue. I genuinely like @Trish 's word "crap" and would like a formal equivalent - which escapes my flakey head.

The only additional thing that I would make explicit is that 1) deep thought, by sufficiently informed people, who also listen where necessary is 2) also done in a group sometimes. This means that 3) assessment can sometimes be more procedurally formal than standalone personal evaluations. And, absolutely critically, individuals or such groups will 4) also make relative comparisons between findings/opportunities. To be clear, I know that nothing that you wrote contradicts this. Your experience on research/ethical committees is an example of that, plus your wider history. But point 4 is something some people would prefer to obfuscate - point 4 will remain something that pwME will have to get used to working with IMO - S4ME is well placed to navigate those opportunities/pains.

Just fleshing out the unavoidable nature of this a bit more for anyone still reading: a group might be deciding/prioritising policy choices, investment opportunities, marketing budgets or regulatory questions. And the group may be formal or informal. Maybe a committee, maybe in a commercial setting or maybe even as a part of political discourse (e.g. opposing experts giving testimony to a parliamentary select committee). Sure, groups can muck up, as we know well. But formal assessment and comparison can, must and does exist - otherwise very little will ever be decided in life. Action requires it, particulalry at scale. They can also straight-jacket things in some ways (hence pwME understandable neuroses), but that is a great problem to have one day - as it means pwME would have achieved institutional, commercial or political relevance.

This, this and some more of this

 

Not that I can remember, no