2021

From PATIENTS ASSOCIATION Newsletter, They are collecting info on patient experience via a short survey (closes this w/e) "NHS England has conducted a review of non-emergency patient transport services (NEPTS). These services help people to get to NHS appointments if they are not able to travel...

Several threads have been merged ME-conferences in Sweden Oct 17th and 18th 2018 RME, the Swedish patient organisation, invites once again to two conferences about ME this autumn. Some of the programme is in English, and some in Swedish. (I have translated the Swedish parts for this post)...

Full title: Adverse event recording failed to reflect potential harms: a review of trial protocols of behavioral, lifestyle and psychological therapy interventions...

Abstract One in four myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied. Here, we report a comprehensive examination of the symptoms and clinical...

Abstract Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disorder of unknown physiopathology with multisystemic repercussions, framed in ICD-11 under the heading of neurology (8E49). There is no specific test to support its clinical diagnosis. Our objective is to review the...

2 of their interviewees have/had CFS...

Hopin Lee, PhD1,2; Aidan G. Cashin, PhD3,4; Sarah E. Lamb, DPhil1,5; Sally Hopewell, DPhil1; Stijn Vansteelandt, PhD6,7; Tyler J. VanderWeele, PhD8; David P. MacKinnon, PhD9; Gemma Mansell, PhD10; Gary S. Collins, PhD1,11; Robert M. Golub, MD12,13; James H. McAuley, PhD4,14; and the AGReMA...

Highlights • Cerebral blood flow in ME/CFS patients remains abnormal 5 minutes post-tilt test. • Post cerebral blood flow abnormalities do not depend on hemodynamic results and on end-tidal carbon dioxide pressures during the tilt-test. • Post cerebral blood flow abnormalities are most severe...

Highlights PNES may be associated with a history of previous trauma/abuse. Abuse was more commonly reported in the PNES group than the epilepsy group. Future research should control for the effects of comorbid depression and anxiety in patients with PNES. Abstract Psychogenic nonepileptic...

Recurrent abdominal pain (RAP) is a common medically unexplained symptom among children worldwide. However, the biological mechanisms behind the development of functional and behavioral symptoms and changes in blood markers have not been well explored. This study aimed to assess changes in the...

Objective To examine demographic and clinical characteristics of individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with and without joint hypermobility We hypothesized that JH+ patients would have an earlier onset of ME/CFS symptoms as well as increased severity...

https://blogs.bmj.com/bmj/2021/09/20/to-speed-progress-in-treating-chronic-conditions-engage-patients-and-caregivers-as-research-partners/

Abstract This is a comprehensive literature review of chronic fatigue syndrome (CFS). We provide a description of the background, etiology, pathogenesis, diagnosis, and management regarding CFS. CFS is a multifaceted illness that has many symptoms and a wide array of clinical presentations. As...

Abstract Objectives Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is often reported to be caused by an infectious agent. However, it is unclear whether one infectious agent might be the cause or whether there might be many different infectious agents. The objective of this study...

Title Aberrations in the Cross-Talks Among Redox, Nuclear Factor-κB and Wnt/Catenin Pathway Signaling Underpin Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Review and New Hypothesis Based on Results of Network, Enrichment and Annotation Analyses Abstract There is evidence that...

August 2021 DOI:10.13140/RG.2.2.30505.72806 Conference: 2021 IACFS/ME Virtual Conference Authors Penelope McMillan, Penelope Del Fante, Geoffrey Hallmann, Jade Barclay Abstract Background: ME/CFS is a stigmatised, often misunderstood condition. This situation is compounded by minimal...

Abstract Background: Routine blood analytics are systematically used in the clinic to diagnose disease or confirm individuals’ healthy status. For myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disease relying exclusively on clinical symptoms for its diagnosis, blood analytics...

"Government discussions with the National Institute for Health and Care Excellence about myalgic encephalomyelitis and chronic fatigue syndrome – Baroness Thornton Oral questions" https://www.theyworkforyou.com/calendar/?d=2021-10-12#cal35881 (don't have any more details)

Lutz L, Rohrhofer J, Zehetmayer S, Stingl M, Untersmayr E. Evaluation of Immune Dysregulation in an Austrian Patient Cohort Suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Biomolecules. 2021; 11(9):1359. https://doi.org/10.3390/biom11091359 free full text...

Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With Postural Orthostatic Tachycardia Syndrome Kate M. Bourne et al "Abstract Background Postural orthostatic tachycardia syndrome (POTS) is a chronic form of orthostatic intolerance associated with a significant...