The MEpedia Primer for Journalists

That could be interesting.

Though given the statistics on your site, I’m guessing me-pedia gets what 10k ish page views per day?

And if you look at the total views, which is 30+ million, divide that by 8 years and 365 days, you get a figure around 10k. So it seems 10k views per day is pretty much me-pedia’s alltime average.
 
Maybe it'd be good to reach out to some of the journalists doing it right, like Ed Yong, to get their input on how to best structure this for other journalists. I don't think I have the energy to do this, but just throwing it out there.
 
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I really like ME/CFS Skeptic's draft. Some comments that came to mind:
ME/CFS Skeptic said:
The National Institutes of Health and Care Excellence (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS.
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The UK National Institute for Health and Care Excellence (add UK; singular institute so no 's'; for Health, not of Health)
I don't think it is true that it actively recommends against other exercise programs, it's just that it doesn't call them treatments for ME/CFS. I'd say 'therefore does not recommend exercise programs as treatments of ME/CFS and actively recommends against GET', or just 'therefore does not recommend exercise programs as treatments of ME/CFS'.


ME/CFS Skeptic said:
Cognitive behavioral therapy (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease.
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Maybe 'Counselling including cognitive behavioural therapy (CBT) may be offered to people to help them cope with the disease'. There may be times after the diagnosis when people need counselling support e.g. when making decisions about having children.

ME/CFS Skeptic said:
This has been considered a barrier to appropriate patient care.
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Maybe 'This has been a barrier to appropriate patient care and has caused much suffering'.
Reference the recent Swiss survey that found significant suicidal thinking related to psychosomatic paradigms.

ME/CFS Skeptic said:
ME/CFS experts
Luis Nacul
Carmen Scheibenbogen
Lucinda Bateman
Nancy Klimas
Anthony Komaroff
Chris Ponting
Karl Tronstad
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I agree with Kitty, so often our heroes turn out to be not so great after all; and there are other good experts not listed there. Any list of the top 7 will be quite personal. I'd leave the list out.

I definitely agree with linking through to David Tuller and Brian Hughes' blogs.
 
Hutan said:
I really like ME/CFS Skeptic's draft. Some comments that came to mind:

The UK National Institute for Health and Care Excellence (add UK; singular institute so no 's'; for Health, not of Health)
I don't think it is true that it actively recommends against other exercise programs, it's just that it doesn't call them treatments for ME/CFS. I'd say 'therefore does not recommend exercise programs as treatments of ME/CFS and actively recommends against GET', or just 'therefore does not recommend exercise programs as treatments of ME/CFS'.



Maybe 'Counselling including cognitive behavioural therapy (CBT) may be offered to people to help them cope with the disease'. There may be times after the diagnosis when people need counselling support e.g. when making decisions about having children.


Maybe 'This has been a barrier to appropriate patient care and has caused much suffering'.
Reference the recent Swiss survey that found significant suicidal thinking related to psychosomatic paradigms.


I agree with Kitty, so often our heroes turn out to be not so great after all; and there are other good experts not listed there. Any list of the top 7 will be quite personal. I'd leave the list out.

I definitely agree with linking through to David Tuller and Brian Hughes' blogs.
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All suggested changes made, thanks!

I added this for those bloggers:
Recommended reading
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I don't know if it's worth adding more organizations to this, like SolveME and OMF, or if it'll make it unnecessarily long:
Patient organizations
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I think it's important that everything in this is cited, so curious (and responsible) journalists can easily follow up on any claims that they might want to use.
 
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ME/CFS Skeptic said:
Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year
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I think those are actually outdated figures.
[In the past] we estimated a United States ME/CFS prevalence of 1.5 million and an annual economic impact of $36–51 billion. Now, due to COVID and its resulting post-acute sequalae, we estimate total ME/CFS prevalence could rise to between five and nine million. This would incur an annual U.S. economic impact of $149 to $362 billion in medical expenses and lost income, exclusive of other costs, such as disability benefits, social services, and lost wages of caretakers​
https://www.tandfonline.com/doi/full/10.1080/21641846.2022.2062169 (2022)

ME/CFS Skeptic said:
underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden.
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The updated version of said analysis (2022) found it to be just 2.5%
https://www.tandfonline.com/doi/full/10.1080/21641846.2022.2062169

It may also be worth mentioning that both these analyses found ME/CFS to be the most underfunded disease compared to disease burden at the NIH (for which disease burden data was available.)
 
Also it will be really important in said primer to stress the fact that ME is extremely disabling, perhaps, an entire section can be done on this.

Even relatively good reporting on ME often makes it sound like it means: you’re often tired, your sleep is meh and you can get nausea while standing up, and sports makes said fatigue worse for a bit.

So emphasising patients can often be housebound and bedbound, most are unable to work, etc, is very important.

I think this chart could be useful in this context:
upload_2024-6-9_13-17-1.png
It is made by Ror Preston at my request. It uses the data from Hvidberg et al (2015) but removes the psychiatric conditions from the chart, which I think is important given misconceptions about the disease.
 
Epidemiology
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ME/CFS affects approximately 0.4% of the population or 1 in 250 people.[1][13] The illness is much more common in women than in men: approximately 75% of patients are female.[1][13][14] Although ME/CFS can affect people at any age, it is most common in people between the ages of 40-60 years.[15]
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I wonder if this might usefully be expanded to include peaks of onset?

The 'most common in people between the ages of 40-60 years' is true from the point of view of epidemiology, but it always looks a bit odd to anyone familiar with ME/CFS. They're more used to thinking and talking about age at onset, which is obviously a bit different—it is useful background for press articles, though.

The other thing is that currently the page doesn't currently mention children. There is some decent info and sources on the general MEpedia pages, which could be snippeted for the primer.

I need to go and get dressed because I have to go out, but in the meantime, thank you for all the work on this. It's looking good, and it's a vast improvement on the original.
 
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