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Media and Research Digest (013)

Friday 26th October 2018
Welcome to the Thirteenth Emerge Australia Media and Research Digest!

The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

1 – The 2017 Cochrane review of ME/CFS which supports GET has been withdrawn
Author: Kelland, K.

The 2017 Cochrane Review of ME/CFS studies, by Larun et al, has been temporarily withdrawn. Cochrane editors Rachel Churchill and David Tovey stated that the ME/CFS literature review had received “extensive feedback” which they now considered grounds for temporary removal.

Cochrane reviews, published on the Cochrane database, are considered the gold standard for medical evidence based on literature reviews. In 2017, Cochrane published a literature review of 8 ME/CFS studies which concluded that “Exercise therapy had a positive effect on people’s daily physical functioning, sleep and self-ratings of overall health.”

The studies included in this review have received widespread criticism from patient groups as well as critical evaluations from peers (see new publication by Vink below). Even though the review has only been taken down temporarily at this point, it is still considered to be a major success for patient groups and activists for ME/CFS. Additionally, Cochrane’s editors are now apparently considering moving ME/CFS away from mental health into another section, possibly the “long-term conditions” section.

2  – Could the brain’s mast cells be causing Chronic Fatigue Syndrome (ME/CFS)?
Author: Johnson, C.
Link 1:

Link 2:

Dr Theoharis Theoharides (MD, PhD), a pioneer in the field of mast cell research with over 400 publications, has recently weighed in on ME/CFS. He acknowledges that, while deconditioning could contribute to the symptoms, ME/CFS patients definitely have an energy production problem and the HPA axis could be an area of issue as it affects metabolism.

Dr Theoharides proposes that “a mast-cell induced inflammation in the hypothalamus could be causing chronic fatigue syndrome (ME/CFS).” He suggests that a hormone (corticotropin) is released by the hypothalamus during stress which increases the permeability of the blood-brain barrier. This allows immune cells (mast cells) and pathogens to infiltrate the brain which leads to inflammation, which in turn produces more corticotropin and other histamine compounds. These compounds may sensitise microglia cells which produce inflammatory factors in response to even small increases in stressors.

In terms of potential treatments, Dr Theoharides identifies many supplements which may help including magnesium and flavonoids (such as luteolin) which has mast cell inhibiting properties. He does note that it is difficult to get these substances into the brain and notes that intranasal administration may be a solution.

3  – Graded exercise therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is not effective and unsafe. Re-analysis of a Cochrane review
Author: Vink, M.

The 2017 Cochrane review, which examined 8 previous studies of Graded Exercise Therapy (GET) for ME/CFS concluded that overall GET is effective. However, this re-analysis of the report illustrates a number of major flaws and contradicts its claim that GET is safe for ME/CFS.

This analysis, published in Health Psychology Open, identifies 7 key issues with the 2017 Cochrane report:

The researchers of the reviewed studies are proponents of GET and cognitive behavioural therapy (CBT). It is interesting to note that one study out of the eight which didn’t have an association to GET and CBT made the opposite conclusion.
 The Cochrane review excluded a study which found GET and CBT was ineffective and may even be harmful.
The reviewed studies used the Oxford and the Fukuda criteria where the main benchmark was 6 months of unexplained fatigue, and didn’t feature post-exertional malaise (PEM) as a compulsory criteria. 15 percent of the participants labelled as having ME/CFS were actually healthy and 40 percent had co-morbid psychiatric disorders.
Many of the studies included individuals who were relatively high functioning. Many were able to work and had high physical functioning scores. Some participants had normal VO2 max scores.
Most reviews used patient self-reporting and lacked subjective measurements. The tests were also unblinded meaning participants are subject to outside influences.
The Chalder Fatigue Scale is developed by mental health professionals and was geared towards depression and as such included numerous flaws for ME/CFS. This includes a ceiling effect which means if the participant gets worse in one area, the overall scores won’t reflect it.
The percentage of dropouts differed substantially between trials. People experienced negative outcomes for the intervention are more likely to drop out and they are less likely to participate in follow up evaluations. Under-reporting of dropouts would inflate the overall findings in favour of GET.

Overall, this report illustrates the inherit flaws in the 2017 Cochrane review and shows that GET is not a safe treatment method for ME/CFS.

4  – Deconstructing post-exertional malaise in ME/CFS, a cross-sectional patient survey
Authors: Chu, L., Valencia, I., Garvert, D. & Montoya, J.

This recently published paper (June 2018, PLOS ONE – the world’s first multidisciplinary open-access journal) discusses how researchers at Stanford University recruited 200 subjects affected by ME/CFS and conducted an in-depth survey of post-exertional malaise (PEM) to try and deconstruct its various aspects.

The survey asked four questions:

What symptoms, if any, are triggered or worsened by physical or mental activity?
What symptoms are triggered or worsened by emotional distress?
How soon usually after starting mental or physical exertion does your illness begin to worsen?
If you feel worse after activities, how long does this worsening usually last?

Overall, the results showed that over 90% of participants experienced PEM following physical or cognitive exertion. Emotional distress triggered less symptoms in comparison. Additional symptoms included cognitive difficulties, sleep disturbances, headaches, muscle pains, and at least 60% experienced one type of inflammatory immune-related symptom. Onset of symptoms varied among participants with 40% experiencing symptoms within the first 24 hours, 11% having a delayed response of over 24 hours and 40% of participants’ reported that response time varied. In terms of duration, 84% endured PEM of over 24 hours with over 20% experiencing PEM for more than 3 days.

The researchers noted that highlighting these characteristics may improve diagnosis of ME/CFS, and incorporating them into the design of future research will accelerate our understanding of ME/CFS.

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