Ron Davis featured in "nature" journal of science article

[Old Bones]

"Biological underpinnings of chronic fatigue syndrome begin to emerge

Before his 33-year-old son became bedridden with chronic fatigue syndrome, biochemist Ronald Davis created technologies to analyse genes and proteins faster, better and more cheaply. Now he aims his inventions at a different target: the elusive inner workings of his son’s malady."

"Davis’s findings, although preliminary, are helping to propel research on chronic fatigue syndrome, also called myalgic encephalomyelitis (ME/CFS), into the scientific mainstream. Physicians used to dismiss the disease as psychosomatic, but studies now suggest that it involves problems in the chemical reactions, or pathways, within cells. “We now have a great deal of evidence to support that this is not only real, but a complex set of disorders,” says Ian Lipkin, . . .

A report released in February 2015 by the US Institute of Medicine (IOM) has helped to drive the shift. After reviewing more than 9,000 studies, an expert panel concluded that chronic fatigue syndrome was an under-studied physiological illness. “They essentially said, ‘Shame on you for not investigating this,’” says Zaher Nahle, vice-president of scientific programmes at the Solve ME/CFS Initiative . . . "

Read the full article here:

http://www.nature.com/news/biologic...onic-fatigue-syndrome-begin-to-emerge-1.21721

 

[A.B.]

Beautiful. The narrative in the media has really changed in the last years.

Hopefully that it's published in Nature means that some very good scientists will read it and become interested.

 

[AndyPR]

New study coming out from CII.

Lipkin has identified a distinct set of intestinal bacteria in 21 people with chronic fatigue syndrome who also had irritable bowel syndrome — conditions that often occur together. His study, accepted for publication in the journal Microbiome,also links both diseases to changes in body processes influenced by gut microbes, such as the production of vitamin B6

 

[mango]

Ooh, brilliant! Reading this gave me full body goosebumps!

Here is Nature's tweet ("like", reply, retweet!):

https://twitter.com/i/web/status/846717859355070466

And Nature's Facebook post ("like", comment, share!):
https://www.facebook.com/NatureNews/posts/1430281343709037

Please remember to add the link to OMF's "Donate now" page, when you share this article or post comments
http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

 

[A.B.]

This was just tweeted to 1.6 million followers on Twitter.

 

[adreno]

More good stuff. It just keeps coming!

 

[Esther12]

A good sign. I remember thinking that Nature has been particularly bad for us in the past.

 

[Sidereal]

Can't wait for the Lipkin paper to come out.

 

[AndyPR]

Ooh, brilliant! Reading this gave me full body goosebumps!

Here is Nature's tweet ("like", reply, retweet!):

https://twitter.com/i/web/status/846717859355070466

And Nature's Facebook post ("like", comment, share!):
https://www.facebook.com/NatureNews/posts/1430281343709037

Please remember to add the link to OMF's "Donate now" page, when you share this article or post comments
http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

And CII's and Solve ME/CFS's perhaps as well if there is space? http://bit.ly/DonateToDrLipkin and https://donate.solvecfs.org/

 

[Old Bones]

Beautiful. The narrative in the media has really changed in the last years.

@A.B. You're so right about the narrative having changed.

I first started watching for on-line news about ME a year and a half ago. I had just attended a health-focused "Meet-up". A motivational speaker described how she cured her FM with a positive attitude, and suggested I do the same. While challenging her, I spelled out "myalgic encephalomyelitis" on a scrap of paper, and suggested she do an on-line search. My timing couldn't have been worse.

The next morning I did my own search, and was horrified to find pages of articles re-posting the claim that ME patients are simply afraid of exercise.

These days, it's more likely that accurate articles are being "picked up" by various on-line news sites. About time! Now, if only we'd start seeing them regularly without looking. This doesn't appear to be happening -- at least not yet in Canada.

 

[mango]

"Like", reply, retweet!

https://twitter.com/i/web/status/846754501771984897

 

[Molly98]

this is great news, good article.
I wish it all had some influence on changing the narrative in the UK though.
Perhaps it will, eventually but we have MUS pulling us in the opposite direction.

But this is great.

 

[arewenearlythereyet]

New scientist and nature within months of each other. Who needs the lancet !

 

[mango]

And CII's and Solve ME/CFS's perhaps as well if there is space? http://bit.ly/DonateToDrLipkin and https://donate.solvecfs.org/

Great idea! Thank you

I made a short one for OMF, to free up some space

http://bit.ly/DonateToOMF

 

[mango]

https://twitter.com/i/web/status/846771673328160769

 

[mango]

https://twitter.com/i/web/status/846770186736709632

https://twitter.com/i/web/status/846773078755487744

 

[A.B.]

I still think that we as community didn't really appreciate the IOM report enough. It made a lot of change possible in my opinion. They said it very clearly: this is not a psychiatric condition, patients have problems tollerating exertion, and it needs to be studied a LOT more. And we could have had the SEID name and definition, which may not be perfect but is still better than CFS, which is what we're stuck with now for the foreseeable future. If there happens to be a push for SEID again (quite possible given the NIH seems to finally get it), please let's accept it this time. It's clearly better than Fukuda CFS.

 

[Nickster]

https://twitter.com/i/web/status/846770186736709632

https://twitter.com/i/web/status/846773078755487744

This is interesting data about bacteria. My son who suffers with CFS/ME said that his first symptoms of the this crazy thing started with his gut first (particularly in the lower intestine) and from there he had so many reactions to most everything including life. He described feeling this pain in the intestine where it meets the lower intestine (the elbow of the connection) and it felt like a foreign invader was living in there. Getting the proper test for these invaders would greatly help.

 

[viggster]

Amy Maxmen is a former mentee of mine and it's great to see her do good work like this. She recently started working for Nature out of the Bay Area after covering Ebola in West Africa and other daring adventures. She's a good reporter who is now in the front door as more findings emerge. Oh, and Nature is based in London and has a big sway in the UK science community. The sound you hear is the Science Media Centre getting nervous (I hope). ☺

 

[caledonia]

I still think that we as community didn't really appreciate the IOM report enough. It made a lot of change possible in my opinion. They said it very clearly: this is not a psychiatric condition, patients have problems tollerating exertion, and it needs to be studied a LOT more. And we could have had the SEID name and definition, which may not be perfect but is still better than CFS, which is what we're stuck with now for the foreseeable future. If there happens to be a push for SEID again (quite possible given the NIH seems to finally get it), please let's accept it this time. It's clearly better than Fukuda CFS.

No CFS or SEID - a totally new name based on the new biomarker. This is how other similar chronic diseases have gotten traction.