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Links to media coverage of the Naviaux study (Aug 30, 2016)

Hutan

Senior Member
Messages
1,099
Location
New Zealand
From The Washington Post article:

Naviaux looked at 612 different metabolites, which are intermediate substances such as glucose produced by cells as they break down larger molecules and produce energy. They found that 80 percent of the metabolites were lower in those with CFS. They also found what they described as “abnormalities” in 20 of the metabolic pathways.

That sounds impressive - 80% of 612 metabolites. Unfortunately I think it isn't correct.

From the Naviaux paper abstract:

We targeted 612 metabolites in plasma from 63 biochemical pathways by hydrophilic interaction liquid chromatography, electrospray ionization, and tandem mass spectrometry in a single-injection method. Patients with CFS showed abnormalities in 20 metabolic pathways. Eighty percent of the diagnostic metabolites were decreased, consistent with a hypometabolic syndrome.

From the Naviaux paper:
Twenty-one of the top 25 (84%) discriminating metabolites were low. These findings were consistent with the notion that CFS is a coordinated hypometabolic state.
...
Females. Thirteen metabolites were selected as a diagnostic classifier in females as described above.

There were statistically significant abnormalities of any kind (high or low) in only 20 of 63 pathways. So lots of the metabolites tested showed no significant variance between patients and controls.

The paper could have been clearer about this. The Washington Post statement immediately struck me as wrong, but it has taken me quite a while to put together this weak refutation.
 
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slysaint

Senior Member
Messages
2,125
BBC Radio Scotland show - The Kaye Adams Show
I didn't catch the name of the helpline woman who was also interviewed but I was pleased that she brought up the issue of the use of the ICC for diagnosis and treatment and also the over emphasis of CBT/GET treatment in England.
The presenter said that they had been overwhelmed by the response to the issues surrounding ME and that they would return to the subject again.........:thumbsup:
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Do you have a link to that?? For, umm, research reasons only, obviously... ;)

Didn't read it myself - just noticed it was one of the stories on the right when I read the health article. They update those stories so fast that it's disappeared now, and been replaced by "Olivia Newton John's daughter's ever-changing look sparks concern". These people at Fox are thorough, I'll give them that.

Oh go on then, I just searched it for you:

http://www.foxnews.com/entertainment/2016/09/06/kim-zolciak-jogs-so-hard-her-bra-breaks.html
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.

soti

Senior Member
Messages
109
I wonder if 'Elle' magazine, (recently singing the praises of 'it's all in your head') should be informed of the latest developments?

Hmm, since so many ME sufferers are women has anyone tried pitching a feminist angle on this, along the lines of
"a majority-female illness is wrongly trivialized for both female and male sufferers but science is going to save the day"? Maybe it would interest some of the new (not that new, but non-traditional) crop of women's magazines/websites like Bust, xojane, or, in France, Causette?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
While having broad media coverage is desirable I suspect (but don't know of course) that given each mag/website has a style and a target audience as well as an angle for delivering content we might find that some media may not do well at explaining any of the science and that any narrative/story telling will be done to appeal to the audience and may not reflect accurately on the illness.
This may not be true of the magazines mentioned but it's historically been difficult to get decent coverage.
 

Kalliope

Senior Member
Messages
367
Location
Norway
The Norwegian newspaper Bergens Tidende had a feature on ME on Sunday. The article is behind a paywall, but mentions the trial and tells the heartbreaking story of Rebecka who fell ill when she was only 8 months old. She was diagnosed with ME when she was 5.

Dr. Helland who works at Oslo University Hospital at the unit for CFS/ME says in the article that we don't know what the illness is. She believes there is a long way to go before the riddle is solved. When asked about the Naviaux-trial she answers that it is not surprising to find differences between healthy and sick people.
She says we must not forget the biology, but in addition assess whether psychosocial circumstances can play a role. No illness is merely physical. It is not always the same thing that maintains a disease that triggered it. Even a broken leg has psychosocial circumstances.

There are a couple of other patient stories (all very sympathetic).

Professor in neurology, Harald Nyland, who has been interested in ME since the 1970s, is convinced that ME is physiological and that the hibernation-theory is pointing towards something correct. To become chronically ill with a diagnosis like this is hard. The disease is very stigmatised. He has great sympathy for these patients and says they are very brave, great people.

Dr. Owe (Haukeland university hospital) says it is difficult to call it a disease. It is more of a condition. We don't know the causes and find nothing when we examine the patients.

The Rituximab-trial to Fluge/MElla at Haukeland University Hospital is mentioned as is a #MillionsMissing-demo from June.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I feel the need for medics to elaborate on this psychosocial role in medicine. In clear language and specifics.

The rest sounds very good. Except Dr Owe who clearly doesn't have a clue (or even an inkling perhaps)