Fri 6th July 2018
Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Welcome to the Sixth Emerge Australia Media and Research Digest!
One quick announcement :-
We are starting to gear up for a screening of Unrest (plus Q&A) on Thursday evening, August 2nd at Melbourne Uni. The screening is organised jointly between Melbourne Bioanalytics, ME Action and Emerge Australia (go collaborative efforts!). If you’re in the Melbourne area please think about sharing this information with your doctor, friends and any relevant professionals.
It’s free to attend (donations to Melbourne Bioanalytics are welcomed but not compulsory) and there will be a great panel with a super awesome professional MC following the screening. Panel members include scientists, patients, myself (Emerge CEO) and Dr Don Lewis.
We’ll also have some great buffet style food and wine to encourage networking following the event.
We hope that you enjoy the digest. Thanks for reading!
– Dr Heidi Nicholl, CEO Emerge Australia
1. Transient Receptor Potential Ion Channels in the Etiology and Pathomechanism of CFS/ME
By: D. Staines, S. Du Preez, H. Cabanas, C. Balinas, N. Eaton, R. Passmore, R. Maksoud, J. Redmayne, S. Marshall-Gradisnik
International Journal of Clinical Medicine, May 2018
Symptoms of ME/CFS may be due to the impaired passage of calcium ions into cells. Nutrients such as calcium, sodium and magnesium are essential for normal metabolic processes which are constantly occurring in nearly every cell of the body.
These substances can only enter cells at specific entry points in the cell membrane, in the form of positively charged ions e.g. calcium enters as Ca2+ ions. These entry points are called transient receptor potential (TRP – pronounced ‘trip’) ion channels.
Ca2+ plays an important role in intracellular signalling pathways so it is essential for the normal functioning of each cell. The level of intracellular Ca2+ falls as it is used up by the cell and this normally leads to activation of the TRP channels followed by an influx of Ca2+ to replenish the level of Ca2+ within the cell. Slight variations in genetics can result in the formation of faulty proteins in some TRP ion channels, with the resulting faulty proteins preventing entry of Ca2+ ions into cells. There is also evidence that the faulty TRP ion channels can “block” neighbouring normal ion channels on the cell membrane and further prevent entry of Ca2+. This could account for the broad range and severity of ME/CFS symptoms.
TRP ion channel variants may be possible future targets for drug therapy to improve Ca2+ entry into cells in ME/CFS patients.
2. Study finds a lower liver volume in ME/CFS patients
By: Pawel Zalewski, Andreas Finkelmeyer, James Frith, Laura Maclachlan, Andrew Blamire & Julia L. Newton
Fatigue: Biomedicine, Health & Behavior
A Study done by the Institute of cellular medicine in the UK, in conjunction with colleagues in Poland found that ME/CFS patients had lower liver volumes compared to their healthy controls.
The liver is a capacitance vessel for maintaining Blood Pressure (BP). Among ME/CFS patients, along with significantly reduced liver volumes, it was found that liver volume was unrelated to BP drop upon standing but was associated with BP returning to baseline. Additionally, red cell and plasma volume were positively associated with liver volume.
Overall, the study suggests that the liver is involved in maintaining BP levels.
3. Major Funding for Dr Ron Davis’ research
By: Cort Johnson
Health Rising Online / Blog / Magazine
After being twice rejected for an ME/CFS focused research grant, Ron Davis finally got his grant for “Molecular and Single Cell Immunology of ME/CFS” at the Stanford Genome Center.
The proposed work will combine Ron’s research on HLA genes with Mark Davis’ work on T-cells. Previous findings show that T-cells are unique compared to other immune cells, in that they have the ability to create specially designed clones of themselves and target the infected cells or the pathogen itself.
In ME/CFS, it is thought that T-cells are busily churning out identical copies of themselves in response to some threat or insult. This study will determine the breadth and extent of T-cell activation in ME/CFS and will also assess the HLA locus of a large number of ME/CFS patients.
With this study, it will finally be clear what those activated T-cells are targeting in ME/CFS, and therefore should cast some light on whether ME/CFS is an autoimmune disease, is caused by a pathogen or both. A better understanding of the molecular framework of ME/CFS will help in both diagnostics and treatment, with the research also contributing to the empirical data on other medically challenging conditions such as Multiple Sclerosis, Lyme disease and Fibromyalgia.
4. Politics and Awareness of ME/CFS
By: Laurel Ives
On June 21st the UK parliament sat for a 3-hour debate specifically focused on ME/CFS.
Scottish National Party MP Carol Monaghan called the debate to ask the House to consider Myalgic encephalomyelitis treatment and research. She described ME/CFS as a ‘hidden illness’ and talked of the £3.3 billion burden of disease. She argued that Graded Exercise Therapy (GET) is often damaging and that guidelines recommending its use are in need of revision. The minimal funding for ME/CFS compared with other illness was also emphasised.
A number of MPs cited patients in their own constituencies who reported that GET had made their condition worse. It was argued that a lack of awareness, funding, research – and the often negative attitude of health professionals – all contributed to failures in the system that seemed to abandon those living with ME/CFS.
It was noted that the cross-party consensus in the debate and parliamentary support are major steps forward for ME/CFS.
Video Link: https://parliamentlive.tv/event/index/3d63c39d-18f3-4cd7-8509-c91785dced98
By: Carol Monaghan, MP
The House, Parliament’s Magazine
You can find a complete transcript of the debate here:
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