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

[Hutan]

Post moved from another thread “Your Blood is Black”: My ME/CFS Experience with HELP Apheresis in Germany

On the question of whether a treatment that is reported to be useful by one or more patients or promoters should be written about:

There are a lot of clues that can help us work out if something is worth highlighting as perhaps worth a try outside of a trial. Things like,

• is the science, the mechanism plausible? (for example, does the clip on the ear that is supposed to stimulate the vagus nerve even go on a bit of the ear near the vagus nerve?). If we can't tell, then opinions from people who know something about the specific field can help. Is there any sort of replication e.g. another unrelated lab is reporting the same thing, another unrelated clinic is able to replicate results? Or does it all rest on the word of one person/organisation?
• Does the person who has come up with the treatment stand to make a lot of money? Do they have the background to be making the claims they are making? Or do they have a background in dodgy deals and fraudulent claims? Have they set up a business based on the treatment? Has the person said implausible things in the past?
• Is the treatment similar to anything that has been tested and doesn't really help (e.g. anything involving thinking positively, or mindfulness)
• Is the improvement really significant and has it happened in a number of people who are past that initial two year period when recovery is common? Are the people who say they have recovered actually known in the ME/CFS community - as in, legit patients rather than 'plants' to drum up business? If you go back to them six months after they said they were better, are they still better? Could the person claiming recovery have been misdiagnosed - does their illness really sound like ME/CFS?
• Could a person suffer substantial harm if they have the treatment (including spending a lot of money or wasting a lot of time or blowing their credibility with their doctors and family)?

Many people are desperate for something to make them feel better. So writing about claimed cures carries with it a responsibility. Pointing out 'more research is needed' won't stop people from signing up if the treatment sounds like it might help. I think I'd be more worried about promoting something dodgy that harms people than not promoting the thing that ends up being the cure. Because there's a whole lot more dodginess out there than cures, and because, if something is indeed a cure, it will almost certainly still be around next month and the month after that, and there will be a bit more information about it by then, that can help people know if it is the cure for them.

Another issue is that, if there is a belief that ME/CFS can be cured by some laughably implausible treatment, it reinforces ideas that we are just hypochondriacs who need the crutch of a pseudo-cure to become well. That makes it harder for us, and for the researchers trying to get funds to study something that is plausible.

Another issue is that people working their way hopefully through a long list of implausible treatments probably aren't feeling angry about the lack of useful treatments. And we need that anger and frustration to advocate for better funding and better research.

 

[Creekside]

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

 

[NelliePledge]

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

Side effects and timeframe of at least 6 months are very important aspects on any report of individual improvement. I’ve had prescription medication that helped quite a lot with sleep for months then i became aware of the significant side effects and then eventually the beneficial effect reduced to negligible.

 

[Trish]

I think you rather miss the point, @Creekside. Hutan's post and the thread title are about journalism, not about individuals sharing their personal experiences on blogs, forums, and other social media.

Someone who earns a living from journalism, whether via payment from a media outlet or from donations as for example Cort Johnson does, has a bigger responsibility to be selective about what they choose to write about and how they write it, especially if they are specialist journalists writing about a specific disease and being given access to scientists to attend their private meetings and do interviews.

That gives them both the status as a sort of expert and the responsibilty that comes with it to discriminate between scientific research findings and hype from salespeople of bogus therapies, and individuals telling their stories and what they believe cured them based on their own and possibly a few others' anecdotes. Treatments are not like lottery tickets, treatments can cause significant, sometimes irreversible harm.

 

[Creekside]

Side effects and timeframe of at least 6 months are very important aspects on any report of individual improvement.

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.

 

[Creekside]

Hutan's post and the thread title are about journalism,

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).

Treatments are not like lottery tickets, treatments can cause significant, sometimes irreversible harm.

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.

 

[Trish]

I'm thinking as much about psychological, mind/body treatments that can cause immeasurable harm, such as the Lightning Process, Gupta Amygdala, neural re-whatever, etc., even CBT of the supposedly supportive kind can cause harm, as I know to my cost. I don't want to see anyone who takes donations from sick people to support their writing about ME/CFS giving any crediblity to any of these things, however much their proponents try to persuade them they have been helped by them.

I am happy to donate to someone like David Tuller, who does his research and is willing to be extremely critical of unevidenced treatments. I personally would not donate to someone who writes enthusiastically about everything, however weak or non existent the evidence.

 

[Kitty]

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.

 

[Creekside]

I'm thinking as much about psychological, mind/body treatments

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.

 

[Ash]

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.

 

[SNT Gatchaman]

Less gullible people will view information with healthy skepticism, and follow up with more research into the topics.

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

 

[Kitty]

huge social condemnation of people not trying hard enough to get well, not willing to try anything to recover.

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.

Less gullible people will view information with healthy skepticism, and follow up with more research into the topics.

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.

 

[Milo]

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?

 

[Cort]

moved post

The bigger the megaphone, the greater the responsibility. Reporting successes for N=1 experiments sounds very much like promoting treatments that can be harmful for others and harmful for our community as a whole. It sounds a lot like promoting to me.

You need to be aware that here we talk about science and the way forward. It's what I love about this forum. We "promote" good science, and we criticize where needed. Kindly.

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.

 

[Trish]

To take the converse argument, by including n=1 cases in series of articles that purport to be about scientific developments in ME/CFS, there is the real danger of encouraging people to try things that are useless, expensive and have the potential to cause harm.

Writing enthusiastic articles about particular doctors experimental treatments on pwME can be no better than advertising for those doctors' sometimes harmful treatments that have no research evidence to support their relevance to ME/CFS.

Personally i would only want to see articles about such treatments if they are being done as part of a clinical trial, as was the case with rituximab, where the doctors involved were very clear that people should not be prescribed it until and unless the trials proved positive. And as it turned out they were right, as the phase 3 trial showed it was no better than placebo.

An example of an article I consider irresponsible is the latest Health Rising blog on CCI/AAI surgery, discussed here:
https://www.s4me.info/threads/the-s...fs-discussion-thread.9638/page-76#post-501023

 

[dave30th]

I am happy to donate to someone like David Tuller, who does his research and is willing to be extremely critical of unevidenced treatments.

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.

 

[Trish]

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.

I question the suggestion that mind body practices are not thought of as harmful. When I was healthy meditation, mindfulness etc was pleasant and relaxing and probably did me a bit of good. Now they make things worse by focusing me on pain etc and leaving me more tense. And positive affirmations make me feel a failure, and remind me of all the things I can't be or do.

 

[NelliePledge]

Simple example of the negative side of mindfulness etc I was doing a yoga class years ago at a spa day and at the end there was a guided meditation which involved going back to last time you were on a beach, no negatives there…. Except last time I had been on a beach several weeks earlier that year we had scattered the ashes of a close family member.

 

[Ash]

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.

 

[dave30th]

I question the suggestion that mind body practices are not thought of as harmful. When I was healthy meditation, mindfulness etc was pleasant and relaxing and probably did me a bit of good. Now they make things worse by focusing me on pain etc and leaving me more tense. And positive affirmations make me feel a failure, and remind me of all the things I can't be or do.

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.