The Hornig/Lipkin cytokine study is out! Let's light up the internet with calls for biomed research!

[oceiv]

There are a lot of articles listed here.

While we need to correct misinformation in bad articles, we have to be careful about giving more attention to bad behavior than to good. Any attention is good attention in some media books and we don't want to encourage those who write garbage.

I see a two-pronged goal here:
1) we want to encourage sound, scientific, sympathetic writers to keep writing on the topic... and their editors to want to publish such articles, and
2) we want people who search to learn more about SEID to find the most accurate and informative articles.

How best to accomplish these goals?

I agree with these goals. Regarding #1, a similar discussion is going on in another thread. Do you mean that more attention should go towards reinforcing good writers than to correcting bad journalists? Or do you mean that no energy should go towards correcting bad articles? I'm on board for the first. While some sites consider any traffic good traffic (often described as click-bait sites), reputable news organizations (NYT, WAPO,WSJ for example) are concerned about maintaining their credibility and tend to correct or amend coverage if there are numerous valid reader complaints. On this illness (as we know), some news orgs have been slow to change. Some reporters have self-corrected and have adjusted their views after patient input, though.

Good points - for (2) I think we need a new thread (when we're ready) listing the good articles with a title that says something like, 'Click through to these good Hornig/Lipkin articles to give them traffic and get more of them!'

For (1), if there's bad info, I think we need to point it out and say in the comment that there's a big audience for articles on this where the writer understands the issue, and a well-networked community who will funnel attention to it.

Yes! We should also try, as has been mentioned to get across the point that more funding is needed, perhaps with a hashtag that can be followed on social media. #MoreFundingNow for example.

It's important that we go beyond "clicking through" on the very best articles. We want to use the power of search engines to our advantage. We want the best articles to come out on top when someone (journalist, politician, your grandmother) does a search.

Someone who knows more about these things can hopefully give better information than I can at how to utilize this resource, but I think we need to make a concerted effort to use search engines to find the best articles (even though we know they're there) and click on the result to get search engines to give more priority/value to those articles. Am I right? Anyone here up to speed on how search engines work?

Before I was sick, I was in a tech field.. If anyone knows someone on either the technical side or the marketing side of internet site marketing, these people would be good people to ask. Also, tech geeks (geek used in the positive sense of the word) are always good resources. I do know that some issues advocacy groups use a focused search strategy - maybe others have experience in this strategy. I don't know how or if search engines approve, frown upon or don't care about these strategies. These groups also always share news articles with each other quickly, through email, twitter and Facebook, so that articles they like are read and rank highly on news org sites (different from search engine ranking). There are many factors that determine search engine rankings, like newness of content and good SEO strategy. Traffic is always a big part of search engines' algorithms. Google has an overview of their search process, but the algorithms are proprietary.

 

[oceiv]

Another A-rated article from a popular science site. Their coverage of health studies is extensive. Since they cover a lot of studies and ME/CFS studies have included studies from doctors/scientists who want to disprove this illness, this site's coverage of this illness is a mixed bag. They cover the studies as they come, whether positive or negative. This article is great, though and includes a lot of scientific details not included in other coverage.

ScienceDaily
Direct link: http://www.sciencedaily.com/releases/2015/02/150227144903.htm
Search for this title plus key words in your favorite search engine. You need to add in "Science Daily" to your search because other articles have the same title: Robust evidence that chronic fatigue syndrome is a biological illness Science Daily
Journalist: None listed. Source is http://www.mailman.columbia.edu/new...e-chronic-fatigue-syndrome-biological-illness
Article is easily shared with email, twitter, Facebook buttons at the top of the article.

Has anyone read the WSJ article? In a Google News search, it is #1. I'd love to know if #1 is good or bad.

 

[Simon]

Request for brief guide to media coverage (@oceiv ?)
Hi
I'm working on a blog about the Hornig/Lipkin cytokine study that's been in the news. While the blog focuses on the science I just wondered if someone could give me a thumbnail sketch of the media coveraage

eg
- top 5 pieces in the US (any TV?)
- comparison in the UK
I haven't really been following the media here in the UK but my hunch is that there was much less than in the US, but it was broadly positive despite the best efforts of the SMC. But hoped someone here could put me right on this

Thanks to @Sasha for this thread and help to date

 

[SOC]

Or do you mean that no energy should go towards correcting bad articles?

Not at all. I'm 100% behind correcting bad articles. I'm just suggesting that we don't all rush to read the bad articles for the indignancy factor. Those who read bad articles should comment with corrections. Those who are not up to commenting, or are only going to read a few articles, should try to avoid giving the bad articles traffic. The energy we spend on bad articles should be directed towards intelligent correction, not reading just to get indignant and complain here at PR. The first is a positive effect for the patient population, the second just encourages the bad writers to our detriment.

Yes! We should also try, as has been mentioned to get across the point that more funding is needed, perhaps with a hashtag that can be followed on social media. #MoreFundingNow for example.

Good idea, if it's allowed.

 

[Sasha]

New one on Medscape, haven't read it (requires log-in):

https://login.medscape.com/login/ss...RzY2FwZS5jb20vdmlld2FydGljbGUvODQwNzA2&ac=401

 

[Sasha]

It's interesting that Canada has not covered much of this story, I wonder if Canada has a science medica center too?

And, lo...

http://www.ctvnews.ca/health/chroni...real-measurable-illness-researchers-1.2257005

 

[Cheshire]

From Canada (Québec)
http://journalmetro.com/plus/sante/...-une-maladie-biologique-et-non-psychologique/
http://www.psychomedia.qc.ca/syndrome-de-fatigue-chronique/2015-02-28/biomarqueurs-sanguins-stades

 

[Scarecrow]

New one on Medscape, haven't read it (requires log-in):

https://login.medscape.com/login/ss...RzY2FwZS5jb20vdmlld2FydGljbGUvODQwNzA2&ac=401

Here are the first three paragraphs:

Patients with recent-onset myalgic encephalomyelitis/chronic fatigue syndrome had distinct alterations in plasma immune signatures in an analysis of data and blood specimens from two large multicenter cohort studies.

The findings were published online February 27 in Scientific Advances by Mady Hornig, PhD, from the Center for Infection and Immunity and the Department of Epidemiology, Columbia University Mailman School of Public Health, New York City, and colleagues.

Patients who were within 3 years of developing the illness, which has now been renamed "systemic exertion intolerance disease" by the Institute of Medicine, had prominent activation of both proinflammatory and anti-inflammatory cytokines and dissociation of intercytokine regulatory networks, suggesting a potential biomarker for diagnosing the condition, the authors say.

It's a good report. There are no snide undertones.

 

[Sasha]

Here are the first three paragraphs:

It's a good report. There are no snide undertones.

Any snide responses?

 

[Scarecrow]

@Sasha No, only two but they are positive.

 

[oceiv]

Request for brief guide to media coverage (@oceiv ?)
Hi
I'm working on a blog about the Hornig/Lipkin cytokine study that's been in the news. While the blog focuses on the science I just wondered if someone could give me a thumbnail sketch of the media coveraage

eg
- top 5 pieces in the US (any TV?)
- comparison in the UK
I haven't really been following the media here in the UK but my hunch is that there was much less than in the US, but it was broadly positive despite the best efforts of the SMC. But hoped someone here could put me right on this

Thanks to @Sasha for this thread and help to date

Sure, I can post my top U.S. articles (so far, I've found only 4) and what IMHO makes them top material. Also what I thought of the overall media coverage. If I find a fifth, I will add it. Brief. I haven't personally seen any TV coverage of this study. I haven't read the UK coverage except for 2 articles. I can take a look at BBC, Independent, Telegraph, etc (the links posted already). I'll have to post it late-night, since those are my good hours

For people who read the UK coverage, what were your favorite articles? The New Yorker seems to be a favorite for U.S. coverage, but are there any others people loved?

I'm really appreciative that @Sasha and @SOC have steered this conversation in a positive and pro-active direction.

 

[Sasha]

@oceiv, @Simon, I found the ones in the post below...

 

[Sasha]

US

New Yorker
http://www.newyorker.com/tech/elements/chronic-fatigue-syndrome-iom-report

New York Times
http://www.nytimes.com/2015/02/28/health/chronic-fatigue-syndrome-study-findings-may-lead-to-diagnostic-tool.html

Wall Street Journal
http://www.wsj.com/articles/more-ev...-basis-to-chronic-fatigue-syndrome-1425063603

Science Daily
http://www.sciencedaily.com/releases/2015/02/150227144903.htmYahoo! News

Yahoo! News
http://news.yahoo.com/blood-biomarkers-found-chronic-fatigue-syndrome-194057315.html

UK

BBC
http://www.bbc.co.uk/news/health-31644618

The Independent
http://www.independent.co.uk/life-s...e-syndrome-has-biological-cause-10075856.html

The Telegraph
http://www.telegraph.co.uk/news/sci...roof-that-ME-is-real-found-by-scientists.html

The Daily Mail
http://www.dailymail.co.uk/health/a...ommonly-seen-professionals-not-just-mind.html


France

Le Parisien
http://www.leparisien.fr/laparisien...e-et-non-psychologique-27-02-2015-4563553.php

Other countries: Canada, Germany, Ireland, New Zealand, Norway, Pakistan, Sweden, Switzerland, Tahiti, Thailand

(I'm sure that's not exhaustive - I just found these just now and they haven't appeared on the boards).

I just found this TV clip, which is positive if not spectacular:

http://www.ctvnews.ca/health/chroni...real-measurable-illness-researchers-1.2257005

 

[oceiv]

@Simon

U.S. Media Guide to the Hornig/Lipkin cytokine study

The U.S. media coverage of the Hornig/Lipkin cytokine study has been widespread and mostly positive. Most articles confirmed that this study found significant biological evidence for ME/CFS. More outlets than not reported on the study, although there were some notable exceptions. My top, A-rated articles were NYT, The New Yorker, an AFP wire article, ScienceDaily (republish of a Columbia article) and WSJ (behind a pay-wall, but available through search engines). What made these articles so good? The articles were judged on empathic/positive views towards the disease, accuracy, scientific details, whether they included details not seen in other articles, quality/clarity of writing and whether they provided a larger context of ME/CFS' history. It's important that we give these articles traffic, so that editors know that quality reporting on our disease has a large audience. It's also good to search for them by the article's title in your favorite search engine. If the first page of each search engine has the best articles, our family, friends and doctors will be getting the most positive and accurate info. What were your favorite articles on this study?

(If you want more details of each article in the media guide - up to you. I thought better to put it in and you use only what you need, because I'm offline for many hours @Simon )

Now some specifics of why these articles stood out. NYT: David Tuller (freelancer) has long-time experience writing about ME/CFS and his writing reflects an in-depth knowledge of the struggles patients have had. He also has a friend with the disease, knowledge of epidemiology and a healthy journalistic skepticism of the institutions who have fought against the disease's legitimacy. He listens to patient feedback and self-corrects. The New Yorker: author Meghan O'Rourke has keen insight into and unique perspective on the history of ME/CFS. You will not see this article's information anywhere else. She personally knows what it's like to have a mysterious, undiagnosed illness and how damaging it is when doctors think your disease doesn't exist. AFP: This is a well-written wire article, accurate and heavy on the scientific details. ScienceDaily republish: This popular science site regularly covers health studies. Its previous coverage of our illness has been mixed, but this republish of a Columbia article nails it and includes many scientific details of the study, not seen elsewhere. WSJ: While this article isn't as full of scientific details as others, this journalist and article are top-notch. A Pulitzer-prize-winning journalist, Amy Dockser Marcus knows how to cover complex subjects with utmost clarity. She has intelligently written about a broad variety of subjects, including ME/CFS. This article is easily-consumed and will appeal to an influential demographic.



*AFP is a French wire services, with journalists all over the world. Their articles often appear in U.S. media outlets. Media outlets can choose from a variety of wire service articles.

Special thanks to @shannah for help with the WSJ article. @Simon I'm looking forward to your blog, especially because interpretation of the study in the media has varied between: this study found potential biomarker for only short-term patients (under 3 yrs.) and alternately this study found potential biomarkers for both short-term and long-term patients (over 3 yrs.)

 

[oceiv]

UK Media Guide to the Hornig/Lipkin cytokine study

UK media coverage of the Hornig/Lipkin cytokine study has been less wide-spread and much less positive towards our disease than U.S. coverage. One reason for this difference may be that the SMC's initial coverage included 3 psychiatrists and no immunologists. Imagine a heart study reviewed by no cardiologists. The SMC "expert opinions" found their way into all UK articles that I read. My only A-rated article is the AFP article on Yahoo UK. Reasons for ratings listed above. I read 5 UK articles, a 6th (The Times - great title) was behind a pay-wall: BBC, Daily Mail, The Independent, The Telegraph. The Guardian had no coverage. The main reason for the lower ratings is the fact that most articles emphasized the belief that this disease is either imaginary, psychological or controversial. Also, most took a skeptical or negative tone about ME/CFS. There is some good info in all 5 articles, but the articles either started with these false notions or ended on them. While most U.S. articles picked only medical doctors and/or patients to quote, UK articles more often picked psychiatrists, however there are some doctor and patient quotes. Note: psychological illnesses are real too, but ME/CFS should not be described this way. The better of the UK articles were the BBC and The Telegraph (more good than bad of the ratings criteria above), but they both included portions of inaccurate info and at least some negative tone towards our disease. On UK coverage, is your glass half-full or half-empty? What were your favorite UK articles?

@Simon People who are more familiar with UK media may have a different view of the coverage, as well as how it compares to past UK coverage. I'm a news junkie, but I read only a few UK outlets. I'm interested to hear your and others' more positive take on the UK coverage. Edit or change as you wish, accordingly.

Thanks to @Sasha , @Denise @Esther12 and @Kati for links and context.

 

[oceiv]

I feel weird posting a third comment in a row, but I wanted to respond to @SOC

Not at all. I'm 100% behind correcting bad articles. I'm just suggesting that we don't all rush to read the bad articles for the indignancy factor. Those who read bad articles should comment with corrections. Those who are not up to commenting, or are only going to read a few articles, should try to avoid giving the bad articles traffic. The energy we spend on bad articles should be directed towards intelligent correction, not reading just to get indignant and complain here at PR. The first is a positive effect for the patient population, the second just encourages the bad writers to our detriment.


Good idea, if it's allowed.

I think this is a good strategy. I have the mental energy now to read a whole bunch of articles. But this was not always the case (and might not always be the case). I would've appreciated knowing the best articles, at that time. My mental energy suddenly went up when my physical energy jumped off a cliff. Also, personally, focusing on something positive distracts me from negative things (stress is no good for ME/CFS). It seems like analyzing coverage on any given ME/CFS story and encouraging the good reporting would be an integral part of any ME/CFS campaign. Do ME/CFS orgs publicly focus on this kind of strategy? Or is it all behind-the-scenes with marketing and PR? I put our suggestions in my media guide, but how do we as a community continue the effort, all together? @Sasha ?

Hashtags are allowed in many comment sections I've seen because they are just extra text and have no functionality, unlike on Twitter or Facebook where they do have functionality. A more moderated section like NYT's may or may not allow it.

 

[Sasha]

IIt seems like analyzing coverage on any given ME/CFS story and encouraging the good reporting would be an integral part of any ME/CFS campaign. Do ME/CFS orgs publicly focus on this kind of strategy? Or is it all behind-the-scenes with marketing and PR? I put our suggestions in my media guide, but how do we as a community continue the effort, all together? @Sasha ?

Hashtags are allowed in many comment sections I've seen because they are just extra text and have no functionality, unlike on Twitter or Facebook where they do have functionality. A more moderated section like NYT's may or may not allow it.

Hi oceiv - I haven't heard of our orgs using this strategy.

To do any community effort on a media story as it's happening (not sure if that's what you mean!), I think we need to be prepared for it. This story was unusual in that a few of us had the press release in advance and knew when the embargo came off and so were able to prepare a bit of a strategy for exploiting stories in our favour by leaving comments, but we hadn't thought of what you're suggesting (which is a clever idea, I think).

I'm embarrassed to say that, having started this thread, I haven't been able to keep up with it! I've been overloaded this week. I don't understand FB and Twitter and whatnot but if hashtags would be useful in future, we should set them up now, and get instructions written up ready so that when the next media story hits, all we have to do is link to those instructions the moment we're aware of the story.

Gotta go now - I'll try and catch up properly on this thread later. I hope I've made sense - haven't had time to go back and read through properly!

 

[Kati]

Hi oceiv - I haven't heard of our orgs using this strategy.

To do any community effort on a media story as it's happening (not sure if that's what you mean!), I think we need to be prepared for it. This story was unusual in that a few of us had the press release in advance and knew when the embargo came off and so were able to prepare a bit of a strategy for exploiting stories in our favour by leaving comments, but we hadn't thought of what you're suggesting (which is a clever idea, I think).

I'm embarrassed to say that, having started this thread, I haven't been able to keep up with it! I've been overloaded this week. I don't understand FB and Twitter and whatnot but if hashtags would be useful in future, we should set them up now, and get instructions written up ready so that when the next media story hits, all we have to do is link to those instructions the moment we're aware of the story.

Gotta go now - I'll try and catch up properly on this thread later. I hope I've made sense - haven't had time to go back and read through properly!

A hashtag is only useful if it is easy to find and it is widely used. There is no point in #sickwithMe or #IOMreport unless you want to find your fellow patients tweeting. there is no points in that. We need to get out of our community, expland to the larger one, and reach out to the decision makers. Twitter is amgood vehicle for that however it needs to be used wisely in order to be effective. Same tweet, 20 times will turn off your followers. Getting a wide range of follower helps. Participating in tweetchats, even better. (Google health care tweet chats for a weekly schedule of chats)