David Tuller article on IACFS/ME conference and the microbiome project

[Nielk]

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research

excerpt:

At a conference last week in San Francisco devoted to myalgic encephalomyelitis — the devastating illness more commonly and misleadingly called chronic fatigue syndrome — it was immediately clear that researchers from leading medical centers in the U.S. and abroad have been making tremendous strides in documenting immunological, neurological, cardiovascular, and other types of dysfunctions among patients. It was also clear that little of this compelling research is being funded by the U.S. government — so much so that one researcher recently launched a video crowdfunding campaign.

Some of the emerging research has yet to be published in peer-reviewed journals, but the persuasive data provided strong support for the argument that the illness is a serious inflammatory condition triggered by infection or other physiologic insults; that it is as debilitating as other major chronic diseases, and often more so; and that patients accused of having a psychosomatic or psychiatric disorder have been seriously mistreated by the medical establishment.

“I was thrilled to see so much good science,” said Leonard Jason, a psychologist from DePaul University in Chicago and a longtime researcher into ME/CFS, as the disease is usually called these days. “That’s such a sea change. There was such a wealth of research that every session you went to you saw abnormalities being pointed out in different domains. It was breathtaking.”

 

[Firestormm]

Brilliant article!! Thank you David

 

[CBS]

Great article...I tried to post the following comment but had technical issues. I'll try again later.

The CDC, NIH and their "patient advocacy organization" partners are going to find themselves diverting precious resources (that should have gone towards research) into damage control. When the whole truth of what has happened is revealed, their failure to exhibit the slightest hint of urgency while so many people have suffered will be their damning legacy.

At the very least, the CDC & NIH could count the frequency of ME/CFS in their morbidity and mortality data. Data was presented at the conference on the stratospheric rates of suicide by patients left with severe CNS dysfunction/damage and no other avenues for relief.

YOU COUNT WHAT YOU CARE ABOUT and the CDC and NIH have clearly and callously failed to show any concern for millions of suffering patients.

 

[rosie26]

There has to be someone out there in this world who has millions of dollars and an interest in ME who can donate the funds. If I win the lotto tonight I can promise you I will pay for the microbiome research you can count on that !

I will be donating $20 soon.

 

[Sasha]

There has to be someone out there in this world who has millions of dollars and an interest in ME who can donate the funds. If I win the lotto tonight I can promise you I will pay for the microbiome research you can count on that !

I will be donating $20 soon.

Weirdly enough, I also have similar plans for my future win on the lottery!

Thank you for donating the $20 - if every ME patient in the US knew about this campaign and did the same, we'd have $20 million to play with!

 

[beaker]

It's a great article. I wish it was published somewhere else. The other articles on the page sound very tabloidly
e.g. "World's Largest Penis" , "How to Create the Perfect On-line Dating Profile" , "10 Cutest Cats" and more.
Yes there is right now(it changes) an article on Christie and the NJ bridge scandal.

Where are you NYT ? But then again, maybe more people read Buzzkill than the NYT?

 

[Sean]

I have very detailed plans for spending my future lotto win.

 

[Esther12]

Great to have decent articles published in a range of places imo. tbh, I've heard of buzzfeed more than I've read it, but I hear of it quite a lot.

 

[Sasha]

It's had over 28,000 views...

 

[Sasha]

48,000 views...