Research Research Digest Research Digest 24/07/20 Welcome to the 52nd Emerge Australia Research Digest, where you will find summaries of some of the latest research and information about ME/CFS, with links to the complete articles. You can also join our community and choose to have the Digest delivered straight to your inbox every fortnight on a Friday afternoon by signing up to our mailing list here. We appreciate the support of everyone who reads the Digest – we encourage regular subscribers to support us with a monthly suggested donation of $2. You can sign up for monthly giving here. Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing Authors: van Campen CLMC, Rowe PC, Visser FCLink: https://www.mdpi.com/2227-9032/8/2/169 In a previous study with 429 ME/CFS patients, these researchers demonstrated that 86% of patients had symptoms of orthostatic intolerance in daily life. The study also found that 90% of patients experienced an abnormal reduction in cerebral blood flow (CBF) during a 70-degree 30-minute head-up tilt test. The researchers acknowledged that the protocol was not suitable for patients with severe ME/CFS so, in this study, they examined the viability of a modified version of the tilt test for severe ME/CFS patients. The study involved 19 severe ME/CFS patients (diagnosed according to the Fukuda and International Consensus criteria) with orthostatic symptoms. The researchers used a 15-minute 20-degree head-up tilt test, and found that that all patients met the criteria for abnormally reduced CBF (which is a reduction of at least 13%). There was also a significant reduction in stroke volume index and a significant correlation between the decrease in cardiac index and the decrease in CBF. This study shows the viability of a modified head-up tilt test to demonstrate reduction in CBF in severe ME/CFS patients. It also confirms that an incline as little as 20 degrees can be enough to elicit orthostatic symptoms in severe ME/CFS patients, which should be taken into account in treatment. Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS Authors: Kingdon C, Giotas D, Nacul L, Lacerda ELink: https://www.mdpi.com/2227-9032/8/3/197/htm This paper, informed by visits with 100 severe ME/CFS patients in the UK, advocates for healthcare practitioners (HCPs) to adopt a “Compassion in Practice” approach when treating patients with severe ME/CFS. The focus should be on providing care based on empathy, respect, and acknowledgement of and learning from the patient. Those with severe ME/CFS are housebound or bedbound and have extreme post-exertional malaise (PEM) as well as other sensitivities and limitations. They may not be able to attend appointments and consequently receive very little or no care from medical professionals or, if they do attend appointments, their presentation will not be typical of their current condition. The paper recommends home visits for patients with severe ME/CFS and also provides some guidelines for HCPs. These include scheduling appointments for midday to allow adequate rest, adopting an appropriate tone of voice for someone who may be sensitive to sound, using simple questions that require short answers and gentle persistence with engaging with patients. As preparation HCPs should avoid smoking or perfumes as patients often have chemical sensitivities. Practitioners should maintain good hygiene and those with post viral infections should avoid visits as research has shown patients are more susceptible to infections. Additionally, they should ensure that visits prioritise agendas according to the patients’ needs. Given the lack of effective treatments, patients themselves as well as advocacy organisations can be a good source of information. During the visit HCPs should use observational skills to gauge a patient’s health and social needs without judgement. Often patients may exhibit cognitive dysfunction as well as variations in symptom severity. HCPs should encourage patients to strive for a balance between activity and rest to minimise PEM, and offer information regarding access to disability services given the opportunity. Further, HCPs should be aware of the distinction between depression and ME/CFS as patients with ME/CFS are limited by their symptoms and not a lack of motivation. As with other chronic illnesses, reactive depression and anxiety may occur and HCPs should be aware of their associated risks. HCPs should also be aware of the possibility of new comorbidities which could be treated. Two-Day Cardiopulmonary Exercise Testing in Females With a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison With Patients With Mild and Moderate Disease Authors: van Campen CMLC, Rowe PC, Visser FCLink: https://www.mdpi.com/2227-9032/8/3/192 Exercise intolerance along with a prolonged recovery from physical and mental activity are important characteristics of ME/CFS. Physical activity intolerance can be measured with cardiopulmonary exercise testing (CPET). ME/CFS patients show similar results to healthy people on a single CPET test, however a CPET protocol over two consecutive days will differentiate the exercise capacity of ME/CFS patients and healthy controls. The aim of this study was to compare the two-day CPET results of severe ME/CFS patients with those of mild/moderate patients. This study included 82 female patients (diagnosed according to the Fukuda and International Consensus criteria) who had undergone a two-day CPET protocol. The authors analysed oxygen consumption (VO2), heart rate (HR) and work load both at the peak and ventilatory threshold (VT). The patients’ illness severity was graded according to the International Consensus Criteria and included 20 severely affected patients, 31 mildly affected patients and 31 moderately affected patients. There were significant decreases from day-1 to day-2 for peak VO2, VO2 at the VT, peak workload, and workload at the VT in all three groups. The percentage decrease in peak VO2 from day-1 to day-2 was not significantly different between mild, moderate and severe patients. The percentage decrease in peak workload from day-1 to day-2 was significantly different only between mild (10%) and severe patients (19%). The authors claim that this is the first ME/CFS CPET study to include severely ill patients, and demonstrate that disease severity negatively influences exercise capacity in female ME/CFS patients, and that deterioration in peak workload from day-1 to day-2 is largest in the severe ME/CFS patient group. Risk factors for suicide in chronic fatigue syndrome Authors: Johnson ML, Cotler J, Terman JM, Jason LALink: https://www.tandfonline.com/doi/abs/10.1080/07481187.2020.1776789 As with many chronic illnesses patients with ME/CFS are at a higher risk for suicide than the general population, but research on the specific risk factors for suicide is scarce. Therefore, this qualitative and quantitative study focused on specific risk factors for suicide within a deceased sample of patients who had ME/CFS. Participants included close friends, family members, and caregivers of 64 individuals who died with a ME/CFS diagnosis. The mean age at death was 54.8 years. Of the 64 participants, 16 stated suicide as the cause of death. The study collected quantitative and qualitative data about various aspects of the last six months of the deceased patients’ lives. Patients who used the term CFS to describe their illness were 2.81 times more likely to die of suicide than those who used ME, ME/CFS or CFIDS. The authors suggest that this may be because CFS is a stigmatising term as this label only focuses on the symptom of ‘fatigue’ despite the presence of many other debilitating symptoms. There was also a significant relationship between the patients’ functionality and risk of suicide. Patients who had enough energy and physical functioning to leave their bed but who did not have the energy for activities outside the house were at the greatest risk for suicide. In addition, patients without comorbid illnesses, both prior to and following the onset of ME/CFS, were at greater risk of suicide than those patients diagnosed with one or more comorbidities. The authors suggest this may be because a comorbid illness may allow the patient to present an illness label to others that is more acceptable, and has fewer barriers to accessing support and resources. Finally, pain was not a significant contributor to the risk of suicide. The authors note the limitations of their study include the small sample size and the ability to only collect data indirectly from loved ones, rather than from the patients themselves. The findings highlight the importance of health care professionals developing ways to counteract these risk factors when interacting with patients and their family members or friends, particularly through efforts to legitimise the illness and provide needed medical and social resources and support.