Responsible ME/CFS journalism - how to report on treatments?

I've managed to stumble across several treatments that worked really well for me, so I did post about them. Sadly, aside from LDN, the others didn't work as well for anyone else. However, unless other people tried it, there was no way to know that it wouldn't work for them. Luckily, they (cumin and T2 or iodine) are cheap and fairly safe. I think it's also uplifting for others to know that it's at lest possible to get lucky and find something that works. Some people report spending tens or hundreds of thousands of dollars on treatments, none of which worked, but I point out that the same can be said of people who buy lottery tickets: lots of people never win, but that doesn't mean that the next ticket won't be a winning one.

I agree that reporting treatment success should be as: "it worked for me, under these conditions" rather than "this will work for you too".

More information on Creekside's treatment experience here:
Personal experience of using cumin to treat PEM

 

Yes, especially since ME has the habit of working for one or two doses, then stopping working and never working again. Luckily, none of my effective treatments had any significant side effects.

 

Yes, that changes it, although the post does say "patients", so it does fit people who did find something and post the "You gotta try this!" message (without waiting to see if it continues working or has side effects).

Well, you could get a paper cut. More seriously, you could get kidnapped by someone who is watching for winners. You could get into a car accident in your rush to cash in the ticket. Very low probability, but so are significant side effects from cumin. I've seem treatments touted that I judged to be too risky to even consider trying, or too unlikely to work to be worth the expense. I'm biased, since I've never encountered serious side-effects from my experiments, and have "won" several times, so I do like the lottery ticket analogy.

 

I usually swerve social media and only read the mainstream press, and they tend to report mostly on published trial outcomes.

The difficulty for journalists is that researchers want to highlight success, so the release will focus on the most positive aspects. With bigger stories—a new discovery in brain imaging, say—journalists will often seek a response from someone who knows the ground but wasn't involved in the trial. They tend to be the ones that add the "Really interesting development, but more work needed" line.

I guess the problem with all that is the assumption that published science is reasonably honest, and the paper's tame expert isn't biased in favour of the authors or on the payroll of the company that funded the trial to show their drug is effective. But with some exceptions (ME among them), reporting rarely seems to look so egregiously bad that it risks major harm.

TwiX and its like, though ... that's a whole other kettle of haddock. As far as I can see, if someone charismatic manages to persuade desperate people that they need a high-risk or speculative treatment, we're left with firefighting as the only option.

 

Humans are gullible, and there will always be those who jump for the next "magic" treatment. You can provide rational arguments and point out the lack of evidence, but if they want to believe in magic treatments--or ghosts or astrology--they are going to, and other people will exploit that. Less gullible people will view information with healthy skepticism, and follow up with more research into the topics.

As Kitty points out, there's a problem where "reasonably honest" sources allow some dishonesty to slip through. Knowing who/what to trust is one of the ongoing challenges of life.

 

I don’t think the problem is people being gullible. I think the problem is a lack of decent information and a paucity of solid options plus huge social condemnation of people not trying hard enough to get well, not willing to try anything to recover. So on the one side you have pressure to improve condemnation if you don’t, on the other people willing to sell false hope. You are pushed and pulled in one direction, one that may not be in your best interest. You need the intervention of ethics and standards in reporting upon all this so as to improve outcomes at a collective level these are currently not looking good at all.

 

The problem is that there are a lot of gullible people and they don't do that, including in positions of authority. Sometimes those gullible people vote in similarly gullible people to represent their aligned mindsets.

That can lead to the situation where the UK Prime Minister writes the word "Bollocks" on a long Covid report, ignoring and overriding scientific advice, and the chief scientific advisor to the MoD (with a damehood) is texting "Who is this fuckwit?" about a professor of evidence-based medicine at Oxford University.

(Perhaps there's a Venn diagram for professors, Oxford and EBM.)

Spoiler: Did lead to this BlueSky post though

https://bsky.app/profile/trishgreenhalgh.bsky.social/post/3kc4v4oxzly2w

 

This.

It's one of the reasons some illnesses are in a different category when it comes to the issue of information. Perhaps that's what needs to be communicated better to journalists.

But how are the newly ill to realise the extent to which highly-qualified people talk absolute tripe on Twitter? If they didn't study science to a high level, how are they to assess evidence? To people in the early stages of an illness without a treatment, every slick, well-argued theory looks plausible. They may not smell a rat until they've read several other equally plausible but mutually exclusive theories, and it's hard to blame them for that.

Scientists who post on social media ought to take more account of this, and remind people (often) that hypotheses aren't evidence and most of them will be wrong. Those reporting on open trials should remind people (often) that they're not evidence because they can't measure effect.

 

Re: “It worked for me”

What exactly did you take the product for? What worked? on what basis can you say it worked?i If a drug for thyroid ‘worked’ then would you say that it treated hypothyroidism and not ME? Does that mean that the next patient will have the same response? do you have a sustained recovery over time, no more crashes, lots of vitality and back to a normal function of professional, recreational and social life, with no restriction?

 

moved post

If you were to reject n=1 you would reject a whole lot of things in ME/CFS - including some that turned out to be helpful. In a disease where treatment trials are rare and don't even scratch the surface of what is possible - you have to start somewhere.

 

Thanks for this. I realize that I have little authority/credibility to judge medical hypotheses and treatments as to whether they make sense from a pathophysiological or clinical perspective. I might have inclinations but they're not really based on much. But it is within my scope to be able to look at reasoning and rationales and epidemiology and whether claims being made are warranted, given the data or arguments presented, especially when it comes to non-medical interventions. Many of these people leave themselves so wide open for that sort of criticism it can be mind-boggling--like the new psychosomatic therapy paper.

The thing about mind-body programs is that I'm sure they can be helpful to lots of people for any number of reasons, basically because meditative practices, breathing exercises, positive affirmations, relaxation practices, etc, can all be really helpful in whatever ways for many people. And certainly not thought of as harmful. It's the overlay and absurd claims of effectiveness for everything that are so irresponsible.

 

When I was able to attend Buddhist teaching events, or sangha with monk in attendance, we were taught that mindfulness was a powerful tool and not to be messed with. That the purpose of practicing daily was so that we would form muscle and mind memory in the good times so that eventually we would be skilled and practiced enough that we could meditate still when times were more difficult.

But this was considered like nutrition for the mind. They always talked about taking care of your body with mindfulness, pure water, nutrition and exercise and time to play and relax and visiting the doctor. They always brought up the importance of visiting a dr when you are sick. And getting medicine, And taking medicine. And taking action when you are sick.

Not sitting on a cushion, trying to meditate your sickness away.

 

Hi, I'm sorry--I shouldn't have been so categorical. I was thinking "not thought of as harmful among people in general for those who find those kinds of things helpful." I wasn't thinking specifically about patients, and should have been, given where I was writing it. thanks for making that point.