Where can patients argue with clinicians and scientists about bad science in ME/CFS?

I doubt very much that there is a specific ME/CFS committee.

 

He was/is completely wrong. He also tried to sue a sick pwME in court

A medical professional should not be aligning herself with an electrical engineer giving medical advice on sick forums. This to me undermines her credibility. She left because of disagreements. I don't recall members here calling her 'stupid'.

 

Judging from the response to when I recently posted about doing something like this, it seems like most think it's pointless, expecting such demands to be ignored as just noise. Zero interest, it seems, even from this forum.

I have to say I was disappointed in that. Not the response to this particular idea, but that merely demanding a basic level of acceptable standards is seen as so unrealistic that it's not worth bothering. Even though it's absolutely right that the standards, especially in evidence-based medicine, are so low as to be theatrical, purely symbolic. I'm not sure why we bother doing anything else, then. Since it never changes. We keep seeing bad studies. We keep criticizing bad studies. Bad studies keep getting funded anyway. Most of them identical. An infinite loop no one dares criticize. Somehow.

I can't imagine an organization being dedicated to such an idea if it's deemed too ludicrous to bother. Which may be why we are in such a bad state. Without those below-acceptable level standards, almost none of this would be happening. And for sure it's a huge uphill battle but no one is calling for this. Not patients, not academics, not clinicians, not health care professionals. No one! Instead the standards are actually lowering, which makes the demand even more significant. Sometimes there are disguised calls for improving things, but their recommendations usually lower standards, because they are not sincere.

Ah, well.

 

This sounds like an elaborate song-and-participation trophy thing to me.

It's funny how there is this idea of academia that is all about smart rigorous criticism, and yet the reality is basically the opposite. Most can't stand any criticism that isn't in the form of a committee of superiors, or whatever. It's all such a joke of a system.

 

Unfortunately, those forums are basically a mashup of the worst offenders and mindset. Even the skeptics sub-reddit is super gullible over the very type of awful pseudoscience we are subjected to and would defend it all.

This stuff is the last great belief system that is completely unchallenged in most settings. Especially among experts. It's simply assumed to be correct and anything that defies it is to be cast out with prejudice. It's super weird to see otherwise rational people display the exact same nonsense that has been slowly cast out to the fringes, like with stuff like astrology and telepathy, which used to be super fashionable beliefs.

But as one post mentioned above, to everyone involved in this, it's just a job. They're paid to do the bare minimum, and when they leave home for the evening or week-end, they can enjoy a real life. We are stuck in this, we literally can't have a life until they deliver something, but they have zero incentive to do so. It makes for a completely unbalanced process. They're content with not producing anything useful, while we literally lose our lives to their indifference. It's such a rotten system.

 

It is.

 

I have been thinking about it, but haven't really got there yet.

Part of what's making me hesitate is the possibility it could be worth waiting on new initiatives until we hear the first of the findings from DecodeME. Even if nothing very clear comes up on first pass, that's not the end of it. There's a huge mass of data to understand.

If, as we hope, early reports trigger publicity and interest, I wonder if that could be an effective way to highlight the deficiencies in the majority of research projects? Even if people with ME/CFS don't have the capacity to pick through research papers, they could share it online with messages such as "It's brilliant to have a team that actually gets it" and "This is how you do proper science".

Even if only 0.5% of researchers are intrigued enough to find out why they're responding like that, it's a gain. It's another person who might understand why patient involvement is so important, and that scientists don't have to be defensive about every criticism of their approach. Listening to feedback doesn't undermine their standing, it makes them better researchers.

Scientists who think they can ignore this because they're the experts, not the patients, are probably a lost cause anyway. For now at least.

That's as far as I've got so far. Apologies, it hadn't occurred to me that lack of response could look like lack of interest.

 

Discussion usually picks up quickly when there is interest. There hasn't been any. It was just a draft that I was planning on fleshing out but seeing the lack of interest I won't bother any further. It was just an idea.

It would be a big project, though. Even though it's technically very little. Everything uphill on ice.

 

I see those as two entirely separate and independent problems. There is actual research, which is a long, arduous process based on scientific processes and methods.

And then there's evidence-based medicine, which is a clown show where standards don't actually exist, can be thought more as style guides for how to write and edit copy-pasted BS. It will never produce anything but sucks up 90% of the interest and resources.

The scientific process is significantly impeded by the clown show. Removing the clown show would make it more likely for the scientific process to achieve something, it exists mainly to impede and has no goal in mind, it produces nothing and isn't expected to. This psychobehavioral approach could genuinely go on for a million years and no one involved would find anything wrong with it.

We would get better science with the clown show is removed from the equation. The only way to achieve that is to enact real standards in evidence-based medicine, so that pseudoscience is no longer accepted and able to overrule the scientific process. Which would basically cancel 90% of the so-called evidence-based medicine nonsense. But of course we're the only ones who want that, the profession prefers the clown show giving fake answers to fake problems invented to cover up real ones. It makes them feel better about it. Somehow.

But obviously transforming medical culture to no longer accept blatant pseudoscience that strokes their egos is likely just as giant a task as effectively solving this problem. Possibly bigger. There's just too much resting on it, it's far from just us. Ideologies usually only ever get beaten by force. By actual, violent force in large scale conflicts. Which is not going to happen here.

But the fact that no one even stakes that position isn't just something that should justify defeatism. It's pathetic, and part of the idea I proposed, what makes it significant, is to be the first to actually make such demands. Especially when the current track is to lower those standards further, as more time passes and the children of this ideology remain mere infants only barely capable of soiling themselves.

 

It’s hard for me to be optimistic when this is the current trajectory.

 

I’m new here and I love this place. Why do people hate it and stay away?

I might be naive and idealistic, but I (used to) work in a firm with a partner structure - they are essentially a breeding ground for this kind of culture. During my first meeting with the entire local division, I inadvertently told the national CEO that I couldn’t believe how late they were with making some recent changes to their «people development approach».

Later on, the «local CEO» told me how relieved she was that someone had said something. She has currently far surpassed the national CEO in the global firm. I’ve had repeated requests from higher ups to keep asking questions. Once I caught Covid, the consensus seems to be that it’s noticeable that I’m not there.

I know some of them don’t like mye questions, but they still recognise that they add value. They make us better as a firm, and they make me better as a consultant because I have to live up to my own standards.

This is a long way of saying that there are still organisations that recognize the value of critical thinking. And if the entire organisation isn’t set up for it, it could be possible to at least find a department or a group. Those people are our hope.

None of this is to argue against anything you said, I just felt the need to emphasize that there are a few people out there still doing good work, and that critical thinking can survive under difficult conditions. Maybe mostly for my own sake..?

 

In those circumstances it would be useful to have a ‘sticky’ on the top of the thread if it is a researcher on it wanting that feedback but I think it does and should change the way I might write if I realised I was replying to the actual author - I’m not always that sharp and particularly if it’s a long thread and I’m replying to someone else’s point it’s easy to forget.

on the other hand I completely understand the points about the pure bps Or psychosomatic stuff as they tend to want to use their rhetorical to persuade us as an aim rather than be interested in wanting patient experiences on the ground or how we experience a certain mechanism or what our reaction to trying (inc eg working long hours or not etc) different things has resulted in when we are eg reading an idea through. So there’s at best a cross purposes because of the way they’d interpret even that feedback as being criticism etc

 

I also imagine as it’s written down and not a private closed thing like a journal club you’d have to be pretty confident and know how to handle these things re it being their real name and their real work and career etc

even if some might want to give it a go I don’t do Twitter for many reasons (heakth, short characters a nightmare task but also leads to a certain type of interaction and pace and so on) but particularly because I don’t want to accidentally write something short meaning one thing and not realise most read it another way and be stuck in the middle of something above my energy abilities to explain in good time.

I’m probably not getting the terms I need here but I can see how if you were entering this from a professional point of view you’d want to come up with your own dos and donts to feel you come across as intended etc. if you haven’t a blueprint of how a few others do it well and are earlier on in career then it’s pros vs cons

public engagement is I’d assume still a big thing (and part of ‘impact’ - something research is sssessed by) including in someone building their career and demonstrating eg worth for things like professorship but there tend to be options for that where they are more in control and it might be eg an enthusiastic general public

@Sasha with the new amend to the Helsinki declaration it’s a well-timed question ‘if taken generally as an idea to adapt a lot’ because actual patient engagement is a different thing in this (to the perhaps one-way here’s our wonderful poster)

but I agree with not all being sent invites given bps ones are likely to have little common ground and could twist being invited to critiques of each of their papers well. Remember some churn out a lot with their name on somewhere each year (and mightn't think it enjoyable to receive 20 links to 20 threads ? what number do we take the hint on something that is relatively findable anyway? on their latest piece of work being perhaps objectively critiqued ... but still.. )

 

And @rvallee
Me too - mines more about really bad timing given other stuff and heakth right atm , so it’s not had my considered time (and won’t for a bit yet, and sort of needs that big picture thought to do a good reply on the main part of it)

but I think my posts around similar threads/topics show I’m behind something on these lines (the Helsinki Declaration/posts by @Hutan and @rvallee about this and patient participation stuff) just no bandwidth to consider caveats/nuance and reply well atm

 

That sounds lie a psychological question!!
I guess we would have to ask them.

One or two have explained that they find the critical analysis disrespectful. You will have to judge for yourself. I don't personally think it is. I also think people with ME/CFS have every right to be critical when so many professionals and charities who claim to by trying to help are so clearly clouded by self-interest.

 

I don't think that would necessarily be true. It might be more so the case that they prefer or are simply more adapted to a different stance altogether: Instead of someone writing a critique, that person simply shows what the problems are by doing the same work but doing better by improving previous flaws and as such making the previous work less relevant, not by pointing out flaws but by doing better.

(I'm not suggesting that this is how things should be done or that this forum should change.)

 

No, I think maybe they just prefer people to say 'Wow, thanks for that!!' and re-tweet.