Nature: A reboot for chronic fatigue syndrome research

Cheshire

Cheshire

Senior Member (Voting Rights)
by Amy Maxmen

After decades of pleading, people with the condition have finally caught the attention of mainstream science — and dozens of exploratory studies are now under way. Scientists entering the field are using the powerful tools of modern molecular biology to search for any genes, proteins, cells and possible infectious agents involved. They hope the work will yield a laboratory test to diagnose ME/CFS — which might have several different causes and manifestations — and they want to identify molecular pathways to target with drugs.

The US National Institutes of Health (NIH) in Bethesda, Maryland, bolstered the field last year by more than doubling spending for research into the condition, from around US$6 million in 2016 to $15 million in 2017. Included in that amount are funds for four ME/CFS research hubs in the United States that will between them receive $36 million over the next five years.
Click to expand...

Very long article that speaks about Dr Jose Montoya, Dr Anthony Komaroff, Dr Leonard Jason, the Rituximab trial, Dr Derya Unutmaz, the NIH program, Dr Ron Davis and David Tuller

https://www.nature.com/articles/d41586-017-08965-0?WT.feed_name=subjects_biotechnology

Edit: Amy Maxmen's tweeter account, @amymaxmen
 
Last edited:
BurnA said:
Wow, that was great article, managed to cover just about everything and no mention of yuppie flu or harassment.

Perhaps we are making progress.
Click to expand...
Didn't avoid yuppie flu.
Around 1987, researchers coined the name chronic fatigue syndrome. But the media snidely called it ‘yuppie flu’. Doctors often told people their symptoms were caused by neuroses and depression.
Click to expand...
 
Nature said:
Around 1987, researchers coined the name chronic fatigue syndrome. But the media snidely called it ‘yuppie flu’. Doctors often told people their symptoms were caused by neuroses and depression.
Click to expand...
I disagree with the story that the psych explanation for symptoms started in the mid 1980s. From personal experience, I can say this narrative was already well established in 1979.
 
Dancer said:
But at least she derided the term "yuppie flu" by using the word "snidely."
Click to expand...
Exactly. Mentioning it is not the issue, it's the context in which it is mentioned. Given that virtually everyone already knows the phrase, and most have preconceived prejudice of what they think it means, it's much better it does get mentioned, if it clearly educates how wrong that prejudice is. If people are afraid to mention 'yuppie flu' even to make it clear what a stupid, unkind, inaccurate, media-stereotyped slur it is, then people will never recalibrate their reaction when they hear it.
 
It is interesting to read this having just looked at the SMC promotion video. Presumably somebody writing for Nature is doing the same thing of going out and getting the hot story just like SMC, but actually doing it properly. Where is the balanced punchy article written by journalists who have had a briefing from SMC? What happened to this particular hot story?
 
cannot read but good to see nature seemingly sucking less this time.

now, to the nature editor:

withdraw the maddox prize

1] accurately reporting why
2] every bit as publically as you bestowed it
3] in all of the same venues to which you released it and it got subsequently picked up from
4] NOW

p.s. this reporting is not good: "bolstered the field last year by more than doubling spending for research into the condition".

twice nothing is nothing. if you fail to point that out then readers think well that's ok then.
 
Samuel said:
cannot read but good to see nature seemingly not sucking this time.

now, to the nature editor:

withdraw the maddox prize

1] accurately reporting why
2] every bit as publically as you bestowed it
3] in all of the same venues to which you released it and it got subsequently picked up from
4] NOW
Click to expand...

I have sort of already done that this week but it may need doing again!
 
Samuel said:
p.s. this reporting is not good: "bolstered the field last year by more than doubling spending for research into the condition".

twice nothing is nothing. if you fail to point that out then readers think well that's ok then.
Click to expand...
Agreed. In fairness to Amy Maxmen I think she is likely trying to get across the point that the tide is turning, even though it may have only just begun to turn.
 
Samuel said:
twice nothing is nothing. if you fail to point that out then readers think well that's ok then.
Click to expand...

I think that's a tad unfair. Had the author just said 'doubled funding', that would be a valid criticism - but here the dollar amounts are given, plus the prevalance estimates of the disease.

Some CFS researchers argue that the NIH’s contribution remains too lean. “A real problem is that funders want to see papers coming out in a short time period, but this is a complex disease that requires long-term studies that are expensive to conduct,” says Eleanor Riley, an immunologist at the University of Edinburgh, UK. Beginning in 2013, Riley helped to launch and maintain an NIH-supported biobank of ME/CFS samples at the London School of Hygiene and Tropical Medicine. But the bank has been limited by funding constraints.

Ronald Davis, a biochemist who directs Stanford’s Genome Technology Center, says that he too struggles to fund his lab’s work on ME/CFS. He points out that although HIV affects roughly the same number of people in the United States — about 1.2 million — it received 200 times as much funding from the NIH as ME/CFS did in 2017.
Click to expand...
 
Last edited:
I wasn't aware of the study looking into prevalance in Nigeria. Bookmarking that for the next time I hear some oh-so-clever below the line commentator argue 'isn't it funny how CFS only affects middle class women in rich countries?' or some variant thereof.
 
Hard for an article which tries to cover so much to be able to get everything right, but this definitely feels like another step in the right direction. Good to see them linking to Tuller's blogs too, so that people interested in the details will be able to find them easily enough.
 
Through the 2000s, advocates accused the NIH of favouring grant proposals focused on psychiatric and behavioural studies, as opposed to those exploring physiological pathways. A sea change occurred in 2015, however, with the IOM’s review5 of more than 9,000 scientific articles. “The primary message of this report,” concluded the IOM, “is that ME/CFS is a serious, chronic, complex and systemic disease.” Soon afterwards, NIH director Francis Collins said that the agency would support basic science to work out the mechanisms of the syndrome.
Click to expand...

Actually, it was about 9 months after the IOM released its report on 2/15/15 that Francis Collins announced on The Charlie Rose Show on 11/04/15 that the NIH would be looking into ME/CFS.

Something else happened in that time frame, though. About two weeks after the IOM report was published, The Center for Infection and Immunity at Columbia's Mailman School of Public Health came out with the paper titled Distinct plasma immune signatures in ME/CFS are present early in the course of illness. The paper was overseen by Ian Lipkin.

A second paper, again from lead author Mady Hornig, on cytokines in the spinal fluid of ME/CFS patients was published a month later, on 3/31/15.

Two positive papers coming from Lipkin's group in the wake of the IOM report probably helped a lot of people at the NIH, quite possibly including Francis Collins, to take another look at ME/CFS.

I've also always wondered if the XMRV paper didn't ultimately shake things up in our favor, too. It should have been a wake-up call to the NIH and the CDC that some outside group might just come along and "eat their lunch" by making a major discovery about ME/CFS, leaving them to answer questions like, "Well, what have you been doing for the past 30 years?" "Uh, calling people in Wichita?"

Starting their own internal research into the biological anomalies of ME/CFS might be considered a cheap insurance policy against such a future embarrassment.
 
Last edited:
Good article but timelines at the end are not pleasant to read....more funding needed and a bigger sense of urgency. I am sick for nearly 2 years but that makes me feel like, it's not a huge deal in this community as some are sick for decades with no help so it feels a bit bratty to moan at the two year mark. There is something wrong there. The whole situation for ME patients is outrageous.
 
@Sunshine3

2 years can be a long time, if you're eagerly waiting for something, if you're not, it's just things not happening. Which isn't great, but it's a lot better, and passes a lot faster, than being in a constant state of anticipation.

ETA - It's best, IMO, just to take things as they come, each hour, day, week, month, year or even decade, as it comes, take what good you can from it and forget the rest. Although at times it feels like there is no time, despite there being nothing but, there isn't enough to waste on bitterness.

(Which isn't to say that a certain amount of griping/moaning and general grumpiness isn't perfectly healthy, everyone needs a release valve :hug:)
 
Last edited:
Wonko said:
@Sunshine3

2 years can be a long time, if you're eagerly waiting for something, if you're not, it's just things not happening. Which isn't great, but it's a lot better, and passes a lot faster, than being in a constant state of anticipation.

ETA - It's best, IMO, just to take things as they come, each hour, day, week, month, year or even decade, as it comes, take what good you can from it and forget the rest. Although at times it feels like there is no time, despite there being nothing but, there isn't enough to waste on bitterness.

(Which isn't to say that a certain amount of griping/moaning and general grumpiness isn't perfectly healthy, everyone needs a release valve :hug:)
Click to expand...

I might just print that post and stick it on my wall.....
 
You must log in or register to reply here.
Back
Top Bottom