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This subject, of whole genome sequencing individual families, occured in the most recent PRIME meeting. The impression that I got was that this was not considered a priority activity for anybody involved in PRIME, which obviously includes Chris.

Last year I was offered the opportunity to be involved in these further efforts. My lack of capacity meant it was a non-starter in the first place for me, but even if I did have the capacity, the lack of interest and respect for the patient voice that I saw in previous meetings would have meant...

There has been an email update sent out to, presumably, all 'involved' in the development of the Delivery Plan. Key points; It is not entirely clear but it seems that either the name of the "Long-Term Conditions Team" at DHSC has changed to the "Neurological, Post-Infection and Inflammatory...

Not sure how much trust we can put in to the authors understanding of ME/CFS criteria. "At its start in 2019, the group focused on the complaint of fatigue, and used as a template the Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS), defined by the CDC in 2015 [4]. This classification had...

Abstract Introduction In a Long Haul COVID referral clinic we describe the primary presentations of fatigue according to the CDC 2015 criteria for myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Methods Between September 2021 and April 2022, 277 patients (61% women, 54 yrs: range 18–90...

Funding awarded: Blood-based biomarkers to aid ME/CFS diagnosis, University of Edinburgh Background Developing an accurate and reliable diagnostic test for ME/CFS is one of the holy grails of research into this disease, and was identified as a priority by the ME/CFS Priority Setting Partnership...

Objective: Venous Origin Chronic Pelvic Pain (VO-CPP) causes pelvic pain in women, and is associated with other dysautonomia syndromes such as postural orthostasis and tachycardia syndrome (POTS), chronic fatigue, interstitial cystitis, and fibromyalgia. These conditions have been shown to have...

Full title: Breathing control training as a treatment for functional seizures (BREATHS trial): a multicentre, assessor-blinded, randomised controlled efficacy and acceptability trial study protocol Abstract Introduction Functional seizures (FS) are events that resemble epileptic seizures, but...

Abstract Background Post-infection disorders of gut-brain interaction (PI-DGBI) are a subset of chronic gastrointestinal disorders triggered by acute infectious gastroenteritis. These conditions impose a significant burden on patients’ quality of life. Objectives This study aimed to determine...

Full title: Chronic Fatigue Syndrome Induced by Environmental Toxic Exposure: Effects of Polyhexamethyleneguanidine Phosphate Exposure on Mitochondrial Function and Neural Health. Highlights PHMG-p contributes to CFS by inducing mitochondrial and neurological dysfunction. HD exposure has...

It's been highlighted to me that there is a "Patient Day On Saturday 29th August, a separate patient afternoon will be organised. Participants of the conference will provide an easy language presentation of their work. More information will follow soon!" Link Information elsewhere on the...

Well, the blogs are talking about why activism efforts have been relatively successful in Germany, not why relatively so much research has happened on ME/CFS in the UK. I would argue that in regard to the UK, it might well be the BPS cohorts attempts to specifically psychologise it, in order...

I've not read either part but, given that many of the same things have been tried elsewhere, I think an important additional reason is that these efforts took place in a non-native English speaking country, where the narrative that everybody is individually responsible for themselves and that...

I see that patient advocates and representatives will only need to pay € 650 in order to attend and access video on demand.....

"Join Lionhearted Science – United Against PAIS Post-Acute Infection Syndromes (PAIS), including Long COVID, are among the most complex and urgent health challenges of our time. Their impact extends far beyond healthcare, affecting work, education, social participation and long-term wellbeing...

"MUS are part of chronic and contested illnesses, which are characterized by debilitating yet nonspecific symptoms with limited objective findings [15]. Moretti and Barker highlighted the social and gendered dimensions of conditions like fibromyalgia and Long COVID, emphasizing the...

Abstract Background and Objectives: Medically unexplained symptoms (MUS) represent a clinical syndrome encompassing conditions in which patients present with symptoms that cannot be adequately explained by identifiable organic pathology or do not meet established diagnostic criteria for organic...

"Discussion This study systematically analyzed the efficacy of iCBT in people with and common functional somatic syndromes (including IBS, CFS, and FMS)."

Highlights ICBT improves somatic symptoms and health anxiety with benefits lasting 12 months. ICBT has no significant difference versus other psychotherapies, is higher to waitlist, and similar or slightly higher versus TAU. ICBT exerts moderate effects on improving anxiety, depression, and...

Now published, open access