Friday 27th April 2018
Welcome to the First Emerge Australia Media and Research Digest!
The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
1 – New Test for ME/CFS using Weighted Standing Time
The National Centre for Epidemiology and Public Health, Canberra has recently published a study introducing Weighted Standing Time (WST) as an effective tool to diagnose and measure ME/CFS.
The WST is a modified standing test where a patient’s standing duration is correlated with their reported subjective difficulty.
The study showed that the WST was significantly different for people with ME/CFS as compared to the healthy controls. The results were further connected with pathological markers to provide additional supporting evidence.
Results of the study support the use of WST as an effective way to both diagnose and measure the effect of ME/CFS.
2 – ME/CFS on SBS
SBS recently published an opinion piece about Susan Hutchinson’s journey with ME/CFS and her difficulties with the National Disability Insurance Scheme (NDIS).
Susan was a very active person before an infection from a surgery led to her developing ME/CFS. She was on a Disability Support Pension which was discontinued after the introduction of the NDIS.
The article emphasises the fact that NDIS does not currently recognise ME/CFS even though the system is supposed to provide support based on a person’s capacities. Currently, applicants are required to supply significant supporting medical documentation to even apply. It also highlights the physical and financial burdens currently endured by many ME/CFS patients.
3 – The relationship between ME/CFS and thyroid function
Dutch researchers from the University Medical Centre Groningen and the European Laboratory of Nutrients have proposed that there are shared physiological characteristics between ME/CFS and hypothyroidism.
Hypothyroidism is a condition where patients are unable to produce adequate thyroid hormones to assist in regulating the body’s metabolic functions. Under these circumstances, the pituitary gland in the brain releases higher levels of thyroid-stimulating-hormone (TSH) to compensate.
The study showed that ME/CFS patients on average exhibit lower levels of certain thyroid hormones compared to control groups. Additionally, they found indications of lower levels of iodine in their urine and some evidence of low-level chronic inflammation.
The researchers hope that further examination of the two conditions might establish a causal relationship between ME/CFS and underperforming thyroids. This might eventually lead to more targeted treatments for ME/CFS sufferers.
4 – New study into levels of disability caused by ME/CFS
A new London study comparing employment levels and relative income of people with ME/CFS and Multiple Sclerosis (MS) showed that more people with ME/CFS experience reduced income and higher levels of job loss as compared to than those with MS.
The complex and asymptomatic features that manifest with ME/ CFS, makes it difficult to recognise and difficult to diagnose. This lack of visibility and clarity means that funding and research are limited. In comparison to Multiple Sclerosis investment and acknowledgement of the condition is meagre.
The report surmises that, “Unemployment costs are borne by both the individual and society. The prevalence of ME/CFS and the economic cost of the illness to society should be powerful motivators for policy-makers to encourage better funding of research to discover the cause of, and establish effective treatments for, this disease.”
5 – Immunoadsorption Marked Symptom Improvement in ME/CFS.
A German study (2018) shows that immunoadsorption (IA), a procedure to remove specific proteins from a patient’s plasma, was found to be effective at removing autoantibodies in ME/CFS (e.g. ß2 and M3/M4) and can result in an improved clinical outcome.
However, to obtain more evidence for the efficacy of IA in ME/CFS, larger clinical trials are needed.
6 – Isometric Yoga for Patients with ME/CFS
Isometric yoga has been found to have a positive effect in relieving fatigue in patients with ME/CFS.
A study in 2014 and again in 2018 investigated the possible mechanism behind the relieving effect by comparing autonomic nervous function and blood biomarkers of patients before and after an isometric yoga session.
The findings show that isometric yoga practice induced parasympathetic-dominant autonomic changes, reduced the stress hormone cortisol, increased the anti-stress hormone, and activated the dopaminergic system.
7 – New ME/CFS Treatment: KPAX002
The Synergy Trial – one of the largest clinical trials to date in the field of ME/CFS – conducted a double-blinded, placebo-controlled study testing a drug called KPAX002 at four research sites in the United States.
The trial – funded by K-PAX Pharmaceuticals – was led by Professor Dr Jose Montoya from Stanford University.
Previous research findings have shown that the multisystem range of symptoms experienced by patients with ME/CFS are potentially caused by systemic mitochondrial dysfunction, associated with a hypometabolic state. Furthermore, it is postulated that ME/CFS symptoms are the results of an adaptive mechanism to prevent further oxidative damage to the individual.
The drug (KPAX002) consists of low-dose methylphenidate hydrochloride combined with a mitochondrial modulator (included vitamins, antioxidants, and amino acids designed to broadly support mitochondrial function). The efficacy of the drug was measured primarily by using CIS (Checklist Individual Strength) with four subscales, e.g. fatigue, concentration, motivation, and physical activity, and using changes in VAS (Visual Analog Scale) for fatigue and concentration disturbance symptoms.
The results show that during 12 weeks of treatment, KPAX002 treated subjects demonstrated improvement in multiple outcome measures, including the CIS total score and the VAS for fatigue. KPAX002 had a positive effect on reducing fatigue and pain, where patients with these symptoms had more than double the level of improvement after treatment with KPAX002 compared to those taking the placebo. However, larger clinical trials need to be conducted to study KPAX002 as a possible treatment for ME/CFS.
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