Friday 14th December 2018
Welcome to the Fourteenth Emerge Australia Media and Research Digest!
The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
1 – Handgrip strength as a clinical biomarker for ME/CFS and disease severity
Authors: Nacul, L., Mudie, K., Kingdon, C., Clark, G., & Lacerda, E.
Link: http://www.frontiersin.org/articles/10.3389/fneur.2018.00992/abstract
Researchers from the United Kingdom examined the viability of using Hand Grip Strength (HGS) as a biomarker for ME/CFS. They compared HGS amongst groups consisting of people with ME/CFS of differing severity. The research compared the performance of healthy controls, multiple sclerosis controls, and others with chronic fatigue not meeting the diagnosis of ME/CFS.
Overall, compared with healthy controls, people severely affected by ME/CFS were associated with a reduction in minimum HGS of 15.3kg, while being mild/moderately affected was associated with a 10.5kg reduction.
Results for the study illustrated a clear relationship between the severity of ME/CFS and HGS amongst patients. Therefore, HGS is a potential diagnostic tool for ME/CFS.
2 – Generous $2m donation to bolster efforts of Griffith CFS/ME researchers
Author: Rosengreen, C.
Link: http://app.secure.griffith.edu.au/news/2018/11/27/generous-2m-donation-to-bolster-efforts-of-griffith-cfs-researchers
The Stafford Fox Medical Research Foundation trustee Paul Brotchie announced $2.2 million in funding for two full professional research fellowships for Professors Sonya Marshall-Gradisnik and Donald Staines at the National Centre for Neuroimmunology and Emerging Diseases Research (NCNED) in Griffith University.
“These research Fellowships are in recognition of the outstanding achievements of Professors Marshall-Gradisnik and Staines in biomedical discoveries in CFS/ME,” Brotchie said.
The team at NCNED have three major aims to achieve for this funding:
what is the pathology of ME/CFS and why it causes the illness in the way that it does;
to develop a diagnostic test for GPs and specialists; and
to develop drugs that may be of benefit for the treatment of the illness.
The foundation has been a supporter of NCNED for the past five years with $6.1 million in total contributions.
3 – ‘I was in denial and ashamed by my CFS’
Author: Del Favero, S.
Link: http://www.sbs.com.au/news/insight/article/2018/11/22/i-was-denial-and-ashamed-my-cfs
The article, published by Insight SBS, tells the story of Simon Del Favero and his journey, looking for an effective treatment for ME/CFS.
Simon was a healthy, physically fit individual who hoped to become an architect. At the age of 21, Simon was diagnosed with ME/CFS after contracting a severe bout of glandular fever. Having failed to find effective treatment plans in Australia, Simon became a patient at the Stanford University Medical Centre CFS Clinic in the US.
4 – Emerge Australia’s ME/CFS petition introduced into Australian Parliament by MP Adam Bandt
Author: Adam Bandt MP (Facebook)
Link 1: http://www.facebook.com/Adam.Bandt.MP/videos/522035774966659/
Link 2: http://www.meaction.net/2018/12/05/australian-mp-introduces-petition-for-me-in-parliament/
On 4th December 2018, Australian Greens MP Adam Bandt formally tabled a petition in Parliament for ME/CFS. The petition was signed by close to 1,400 people. The petition, launched by Emerge Australia, asks that the National Disability Insurance Agency (NDIA) work with the ME/CFS community to establish appropriate guidelines for the NDIA assessment as well as for ME/CFS to be added to List B of permanent conditions.
5 – How Chronic Fatigue Syndrome leaves sufferers house-bound
Author: Channel 9
Link: http://www.9now.com.au/today/2018/clip-cjoex06n0002p0hmjtlcwco4h/c9237c0b-c525-4820-8487-0fa2278f9b82
On 13th November 2018 Channel 9’s Today Show conducted a joint interview on ME/CFS with Dr Heidi Nicholl, from Emerge Australia, and Jade Barclay, who suffers from ME/CFS.
The interview began with Jade detailing her struggle during high school after being diagnosed with ME/CFS after contracting glandular fever. Dr Nicholl then discussed the key characteristics of ME/CFS – including Post Exertional Malaise – and highlighted the fact that there is much new biomedical research into ME/CFS.
Finally, the section shed light on the lack of belief and understanding surrounding ME/CFS. Jade ended the interview by sharing her struggle with pain and memory issues which people often didn’t understand.
6 – The abnormal cardiac index and stroke volume index changes during a normal tilt table test in ME/CFS patients compared to healthy volunteers are not related to de-conditioning
Authors: van Campen, C. & Visser, F.
Link: http://www.gavinpublishers.com/articles/Research-Article/Journal-of-Thrombosis-and-Circulation/The-Abnormal-Cardiac-Index-and-Stroke-Volume-Index-Changes-During-a-Normal-Tilt-Table-Test-in-ME-CFS-Patients-Compared-to-Healthy-Volunteers-are-Not-Related-to-Deconditioning?
Researchers in the Netherlands conducted a tilt table test with 150 ME/CFS patients to study their cardiac output and stroke volume response. A tilt table test is conducted by a patient lying on a table which is slowly tilted upwards. The test measures blood pressure via Cardiac Index (CI) and Stroke Volume Index (SVI). Patients were divided into three categories of mild, moderate and severe according to the ME Criteria.
The results showed ME/CFS patients had significant decreases in CI and SVI when compared to healthy volunteers but the results did not vary between mild, moderate and severe ME/CFS patients which suggests decreases in SVI and CI were not caused by de-conditioning. The study concluded by stating that “other factors like decreased blood volumes and autonomic dysfunction may cause this difference in the haemodynamic response between ME/CFS patients and healthy volunteers.”
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