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, by C (Linda) MC van Campen, Peter C Rowe and Frans C Visser in Healthcare 2020, 8(2), 169, 13 June 2020 [doi.org/10.3390/healthcare8020169] (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)
Research abstract:
Introduction:
In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min head-up tilt to 70 degrees, 90% had an abnormal reduction in cerebral blood flow (CBF).
A standard head-up tilt test of this duration might not be tolerated by the most severely affected bed-ridden ME/CFS patients. This study examined whether a shorter 15-min test at a lower 20 degree tilt angle would be sufficient to provoke reductions in cerebral blood flow in severe ME/CFS patients.
Methods and results:
Nineteen severe ME/CFS patients with orthostatic intolerance complaints in daily life were studied: 18 females. The mean (SD) age was 35(14) years, body surface area (BSA) was 1.8(0.2) m2 and BMI was 24.0(5.4) kg/m2. The median disease duration was 14 (IQR 5–18) years. Heart rate increased, and stroke volume index and end-tidal CO2 decreased significantly during the test (p ranging from <0.001 to <0.0001). The cardiac index decreased by 26(7)%: p < 0.0001. CBF decreased from 617(72) to 452(63) mL/min, a 27(5)% decline.
All 19 severely affected ME/CFS patients met the criteria for an abnormal CBF reduction.
Conclusions:
Using a less demanding 20 degree tilt test for 15 min in severe ME/CFS patients resulted in a mean CBF decline of 27%. This is comparable to the mean 26% decline previously noted in less severely affected patients studied during a 30-min 70 degree head-up tilt.
These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS.
4.1. Clinical Implications
Patients are advised to lie down when they experience orthostatic intolerance complaints. Our findings of a clinically significant cerebral blood flow reduction at just 20 degrees suggest that a slight head-up position may not be adequate enough to resolve symptoms of orthostatic intolerance in some patients. Furthermore, the European Society of Cardiology syncope guidelines and other papers advocate the use of a nocturnal head-up position of more than 10 degrees to prevent nocturnal polyuria and the consequent circulatory underfilling [45,46,47,48]. In light of the presented results, this advice has the potential to be detrimental in some ME/CFS patients.
Health rising: Low Brain Blood Flows and Orthostatic Intolerance Ubiquitous in Chronic Fatigue Syndrome (ME/CFS), by Cort Johnson
Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area.
People with ME want to say thank you to everyone who helps them when they need support!
In April, the Women and Equalities Committee put out a call for evidence about the impact of coronavirus (covid-19) on people with protected characteristics. We submitted evidence based on the findings from a survey we conducted to ask about the impact of coronavirus and associated policies on people with chronic illness. The survey was open to anyone based in the UK living with at least one chronic condition.
On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and their loved ones. [
Because there is no cure for ME/CFS and its pathology remains poorly understood, Evelien submitted a petition to the European Parliament, asking for more scientific research into the condition. “More science is the only way forward,” Evelien says. “I’m almost completely bed-bound and I know fellow patients who are even worse off. We cannot let another generation suffer from this horrible illness.”
Most studies to assess effort intolerance in patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have used questionnaires. Few studies have compared questionnaires with objective measures like an actometer or an exercise test. This study compared three measures of physical activity in ME/CFS patients: the physical functioning scale (PFS) of the SF-36, the number of steps/day (Steps) using an actometer, and the %peak VO2 of a cardiopulmonary stress test.
he Health Minister 
They attribute patients’ rejection of psychological and behavioural interventions, such as cognitive–behavioural therapy (CBT) and graded exercise therapy (GET), to a ‘paradox’ resulting from a supposed failure to acknowledge that ‘there is no good objective evidence of bodily disease’.
Metabolic profiling studies have recently indicated 
