The Emerge Australia Media and Research Digest (023) 17th May 2019

Friday 17th May 2019
Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome


Welcome to the Twenty-Third Emerge Australia Media and Research Digest!

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

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1 – Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in Natural Killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients
Authors: Cabanas, H., Muraki, K., Balinas, C., Eaton-Fitch, N., Staines, D. & Marshall-Gradisnik, S.

This study has further confirmed earlier findings from Griffith University researchers that ME/CFS patients have impaired Transient Receptor Potential Melastatin 3 (TRPM3) activity in their Natural Killer (NK) white blood cells. The study further establishes TRPM3 channels in NK cells as a potential diagnostic marker for ME/CFS as well as a target for potential treatment.

Transient Receptor Potential (TRP) channels are molecular channels located on a cellular surface which are important for calcium signalling and homeostasis in cellular activity. Calcium is known to play a vital role in mitochondrial energy production. The TRP Cation channel subfamily melastatin member 3 (TRPM3) is a subset of TRP.

Transient Receptor Potential Source: Shahidul Islam, Md. (2011). Transient Receptor Potential Channels. Advances in Experimental Medicine and Biology. Berlin: Springer.

2  – Markers of non-coeliac wheat sensitivity in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Authors: Uhde, M., Indart, A., Yu, X., Jang, S., De Giorgio, R., Green, P.,… Alaedini, A.

Researchers in the US have published a study which suggests that a subset of ME/CFS patients may have non-coeliac wheat sensitivity (NCWS). Results from the study showed that NCWS is linked to the activation of cells in the immune system, along with a weakened lining of the digestive system. Symptoms of a non-coeliac wheat sensitivity include abdominal issues, fatigue, and cognitive problems, which are also common in people with ME/CFS.

Researchers examined serum sample biomarkers, and together with computer modelling, identified (with a probability of 75% accuracy) that 15% of ME/CFS patients in a cohort of 131 may have NCWS as compared to 4% of healthy controls.

This initial study paves the way for further investigation into the possibility of NCWS in ME/CFS which may guide clinical and therapeutic relevance of food sensitivities in ME/CFS.

3 – Cognitive behavioural therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is not effective. Re-analysis of a Cochrane review.
Authors: Vink, M. & Vink-Niese, A.

A new re-analysis of the Cochrane review highlights 12 areas of concern about the PACE trial and its associated studies.

The paper contends that some of the key major flaws of the Cochrane review and the PACE trials include:

  • Multiple biases from researchers, reviewers, and the methodologies implemented in the studies.
  • Changes were made to outcome criteria which boosted the recovery rate, as compared to control groups.
  • A study was excluded because results showed cognitive behavioural therapy (CBT) did not help non-depressed ME/CFS participants.
  • Most of the studies used the Oxford Criteria, a diagnostic criteria which is too broad.
  • All studies were non-blind trials and relied on self-reported outcomes which can be unreliable.
  • Many participants had multiple psychiatric disorders such as depression and anxiety and CBT is known to be an effective treatment for such conditions. This can alter the findings relating to ME/CFS.

This reanalysis finds that “patient evidence suggests adverse outcomes in 20 per cent of cases.”

4 – Millions Missing Global Campaign 2019

Each year, in the second week of May, thousands of people around the world join in the #MillionsMissing campaign to raise public awareness about ME/CFS.

Last week, Australia was host to five public Millions Missing events, from Perth to Melbourne, Adelaide to Sydney, and all the way up to Palm Cove in Cairns. This year was the biggest campaign yet, with media coverage across a number of different outlets globally. The social media hashtag #MillionsMissing has thousands of photos, videos and comments from the week.

We also made a #MillionsMissing video playlist of what we all watched on the day. You can view the playlist by clicking through to the Emerge Australia Facebook page here:

We especially encourage a regular monthly donation of $2 as this helps us to quantify how many people we are reaching and shows that the Digest is valued. 


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