Prof Jonathan Edwards & patients' journal editorial: ME/CFS is a solvable biological problem

[Simon]

@Simon do you know when we could start to see the first results/ confirmations of those potential models?

Good question. It's likely to take a while, especially if it involves bringing in new researchers. They will have to decide to take an interest, decide what to do, apply for grants... You get the idea

The NIH in house study may well throw up interesting info, but that won't finish collecting data til 2018.

Hopefully good research is in the pipeline. One example is the Lights' work on gene expression changes after moderate exercise in mecfs patients, but not in healthy controls or MS patients. That fits with the second model we suggested, where the brain is normal but abnormal signals come from body (in this case muscles/associated nerves). Two years ago it was reported that a NIH-funded replication of their pilot study has been successful
Sufferers of chronic fatigue, fibromyalgia have hope in new diagnostic tool | Deseret News
Still no publication though, and I like to think one is imminent.

 

[Bob]

The paper is still the most read in the journal and has had 5170 views so far. The next most read article has had 2123 views, and the next paper published chronologically in the journal has had 13 views. Congrats to the authors!

 

[Gingergrrl]

Great paper and somehow I missed it back in April. Congrats to the authors on all of your hard work!

 

[Simon]

The paper is still the most read in the journal and has had 5170 views so far. The next most read article has had 2123 views, and the next paper published chronologically in the journal has had 13 views. Congrats to the authors!

Thanks, Bob. Hopefully there are a good few researchers, as well as many patients, among the five thousand.

 

[msf]

At second glance, the paper does not seem to refer to the gut at all. Perhaps you should add an addendum, mentioning the recent Hanson study, and how this does/doesn´t fit the models of disease you outlined in the paper.

 

[Simon]

At second glance, the paper does not seem to refer to the gut at all. Perhaps you should add an addendum, mentioning the recent Hanson study, and how this does/doesn´t fit the models of disease you outlined in the paper.

The gut is mentioned here:

Two independent research groups are currently examining the possible contribution of gastrointestinal-tract microbiota to persistent immune dysregulation.[32,33]

This hypothesis would fit the first of three major models we cover :

1. The brain is responding normally and symptoms are due to persistent signal input from peripheral tissues, such as cytokines or metabolites, based on persistent immune dysregulation (as in autoimmunity, for example, or, conceivably, low-grade infection).

Mady Hornig has also suggested that another way the gut could affect the brain is by affecting the levels of tryptophan, which is needed to make the neurotransmitter serotonin. That doesn't quite fit the models we propose, but they were never intended to be definitive:

There are many possible models, but three major categories of causal model appear of most interest:

 

[msf]

Sorry, I should have scanned it more carefully, I only read as far as ´persistent signal input´ and assumed it was another faulty response-type theory. And I missed the part about the gut research, which is incorrect by the way. There are at least 4 groups: Hanson´s, Lipkin´s, KDM´s, and Maes´s.

 

[Simon]

The editorial was the fourth most popular openn access paper across all Taylor and Francis journals (probably hundreds of them):
Author Services Open Access: 2016’s most popular research

4) The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem
Jonathan C.W. Edwards, Simon McGrath, Adrian Baldwin, Mark Livingstone, Andrew Kewley

“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is comparable to multiple sclerosis, diabetes or rheumatoid arthritis in prevalence (∼0.2% to 1%), long-term disability, and quality of life, yet the scale of biomedical research and funding has been pitifully limited.”

Downloads: 6,390*
Journal: Fatigue: Biomedicine, Health & Behavior

No. 3 was from the Journal of Sex Research, who's popularity may not have been driven by purely academic interest.

 

[Tom Kindlon]

https://twitter.com/i/web/status/1068581451241799687