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

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Sasha

Fine, thank you
Messages
17,863
Location
UK
The press embargo on this lifted two minutes ago!

Center for Infection and Immunity said:
NEW YORK (Feb. 27, 2015)—Researchers at theCenter for Infection and Immunityat Columbia University’s Mailman School of Public Health identified distinct immune changes in patients diagnosed with chronic fatigue syndrome, known medically as myalgic encephalomyelitis (ME/CFS) or systemic exertion intolerance disease. The findings could help improve diagnosis and identify treatment options for the disabling disorder, in which symptoms range from extreme fatigue and difficulty concentrating to headaches and muscle pain.

These immune signatures represent the first robust physical evidence that ME/CFS is a biological illness as opposed to a psychological disorder, and the first evidence that the disease has distinct stages. Results appear online in the new American Association for the Advancement of Science journal,Science Advances.
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Full press release here.

Stories will soon be appearing so let’s take advantage and act to call for donations, for the NIH to increase funding to $100m/year and for congresspeople to get involved.

Here’s how you can help.

(1) Keep an eye out for stories and post links on this thread.

I’ll update this post with a list. The CII will be trying to update their Facebook page with links to stories here, and so will the Microbe Discovery Project.

If you’re outside the US, look out for coverage in your own country!

Story list

Global: Yahoo News
Global: Medical Express

US: Wall Street Journal

UK: Independent
UK: Telegraph
UK: Daily Mail

France: Le Parisien

Not commentable: New Yorker



(2) Click through to the stories

Give them traffic so they’ll give us more ME/CFS stories.


(3) Post a comment on the news-site calling for donations, funding and action by congress

We want ACTION out of this! So let’s tell people what they can do to help us.

Get in quick as you can so that people see our messages and so that we set the tone.

TOP TIPS:
  • Thank the journalist.
  • Keep it short – people don’t read long stuff. If you’ve got multiple points, do multiple posts.
  • Don’t rant. :)
  • Push the positive – present this as a solvable problem that the reader can help. We just need the money and the political will! Researchers are raring to go!
  • Do not feed the troll! We’re getting good at this. Don’t engage – just politely direct people to the latest research which they’re unaware of. Cite the IOM report. :cool:
That’s it! Go, go, go! :rocket:
 
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Denise

Senior Member
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1,095
Thus far I have seen these links to coverage and the article itself :
http://www.healthline.com/health-ne...hronic-fatigue-is-a-physical-illness-022715#1

http://www.meassociation.org.uk/201...ia-university-press-release-27-february-2015/

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

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

http://www.psmag.com/health-and-behavior/a-test-for-chronic-fatigue-syndrome

https://www.yahoo.com/health/new-study-shows-biological-differences-in-people-112238126322.html

http://health.usnews.com/health-new...stem-changes-tied-to-chronic-fatigue-syndrome

http://www.reuters.com/article/2015/02/27/us-health-chronicfatigue-idUSKBN0LV2BH20150227

http://nymag.com/scienceofus/2015/02/chronic-fatigue-syndromes-biological-roots.html


http://www.businessinsider.com/afp-blood-biomarkers-found-for-chronic-fatigue-syndrome-2015-2

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

http://www.nytimes.com/2015/02/28/h...udy-findings-may-lead-to-diagnostic-tool.html

http://www.eurekalert.org/pub_releases/2015-02/cums-sdr022315.php



The article:

http://advances.sciencemag.org/content/advances/1/1/e1400121.full.pdf
 
O

oceiv

Senior Member
Messages
259
Scarecrow said:
New York Times

http://www.nytimes.com/2015/02/28/h...s-may-lead-to-diagnostic-tool.html?ref=health

Comments not being taken (yet?) on this David Tuller article. Will post if there is any change.
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I read in an NYT article about their commenting system, that articles will either have comments or no comments from the start. The editors choose a certain number of articles per day to get comments. The decision is based on a number of factors. They don't have enough staff to let all of their articles have comments, because NYT comments are moderated.

But NYT does frequently publish letters to the editor and are more likely to publish those if they get a lot on any given article. On the following link, you can find the letter to the editor instructions: http://www.nytimes.com/content/help/site/editorial/letters/letters.html Also there is an article with tips to getting your letter published: http://www.nytimes.com/2004/05/23/opinion/23READ.html

NYT said:
How to Submit a Letter to the Editor
Letters should be exclusive to The New York Times or The International New York Times. We do not publish open letters or third-party letters.

Letters should preferably be 150 to 175 words, should refer to an article that has appeared within the last seven days, and must include the writer's address and phone numbers. No attachments, please.

We regret that because of the volume of submissions, we cannot acknowledge unpublished letters other than by an automated e-mail reply. Writers of letters selected for publication will be notified within a week. Letters may be edited and shortened for space.

To send a letter to the editor:

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From my observation, very high-traffic NYT articles often lead to another article being written on the same subject soon afterwards. They capitalize on high reader interest. This is the third CFS/ME article in a short period of time. I wish Lipkin's leptin study had also gotten this type of immediaite press. It's a great sign that this article was published so soon after study publication.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi guys - had to go and lie down in the dark and I've only just woken up again having missed all the excitement! Sorry I wasn't here to update the thread with places to post comments.

Hope there might be more today.

Great idea about a letter to the NYT @oceiv - and thanks @SOC!
 
Kati

Kati

Patient in training
Messages
5,497
Sasha said:
Hi guys - had to go and lie down in the dark and I've only just woken up again having missed all the excitement! Sorry I wasn't here to update the thread with places to post comments.

Hope there might be more today.

Great idea about a letter to the NYT @oceiv - and thanks @SOC!
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Sasha, I had a thought for you. These kind of days can be stressful for all of us, even if it's sheer excitement. Rumors flew when someone broke embargo. now we know. I decided to get out and breathe fresh air for a while and not remain completely glued to my screen. The news will be waiting when you emerge from the other side of your migraine. Take good care of yourself.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks, @Kati - I had stupidly got dehydrated earlier in the day and it was already building up - and then the multitasking did for me! Ah well. Thanks for your kind thoughts!
 
Marco

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Sasha said:
http://www.leparisien.fr/laparisien...e-et-non-psychologique-27-02-2015-4563553.php

Le Parisien! Just posted a comment and it's in moderation.

Jump in, francophones (or people willing to use Google Translate!).

@Marco?
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Thanks Sasha

Google translate did a fair job and only needed a little tinkering (happy to be corrected by any real Francophones) :


Chronic fatigue, a biological disease, not psychological


Chronic fatigue is a biological, not psychological illness, which can be identified by markers in the blood, according to a study published on Friday, which nourishes the hope of better treatment.

This discovery is "the first solid physical evidence" that this syndrome is "a biological disease and not a psychological disorder" and that the disease has "distinct stages," say the authors of this research from the Mailman School of Public Health at Columbia University.


The study is published in Science Advances journal. With no known cause or treatment, chronic fatigue syndrome of chronic (also) known as myalgic encephalomyelitis (ME / CFS) - has long puzzled scientists.


It can cause extreme fatigue, headaches, difficulty concentrating, and muscle aches.


"We now have confirmation that the disease known as ME / CFS that affects millions of people is not psychological," said Mady Hornig, associate professor of epidemiology at the Mailman School and lead author of the study.


"Our findings should speed up the process for diagnosis (...) and to discover new treatments focusing on these blood markers," (she said welcoming the findings).


Researchers tested the levels of 51 immune system markers in the plasma of 298 patients and 348 healthy people. They found that the blood of patients with the disease for three years or less contained higher levels of molecules called cytokines. In contrast, the blood of patients with the disease for more than three years did not show that level of cytokines.


The link seems unusually strong with a cytokine called interferon gamma, related to fatigue after many viral infections," according to the study.


However cytokine levels do not explain the severity of symptoms, which fluctuate daily. Patients suffer some days and other days not at all.


"It seems that patients with ME / CFS are hit hard by cytokines up to the third year or so. At that time the immune system shows signs of exhaustion and cytokine levels are falling," said Ms. Hornig.


This finding may support the theory that the disease hits vulnerable patients who contract common viruses such as Epstein-Barr, originally mononucleosis, and fail to recover.
 
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