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Highlights There is a lack of therapeutic information about functional symptoms online. We undertook a collaborative research-action project to address this gap. Through participatory design we developed open-access website bodysymptoms.org. Lived experience and multi-disciplinary...

Absolutely, please do.

Now published, Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire, open access, https://www.mdpi.com/2077-0383/13/12/3486 Abstract Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an acquired disease with...

Action for ME on Twitter, "We have been made aware of & understand the concerns relating to the Electric Robin Docu Series & its inclusion of #pwME We have not received contact from the production team & are not providing any guidance or advice for the series."

The ME Association Template Letter: General Election, https://meassociation.org.uk/2024/06/the-me-association-template-letter-general-election/ "ME/CFS is very disabling neurological condition that affects at least 250,000 people in the UK, Many more people have developed ME/CFS during the past...

Don't think it is highlighted in this thread that Garner is now on the Board of trustees of Sense About Science, https://senseaboutscience.org/who-we-are/board-of-trustees/

Full title: Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project Abstract Background Patient and public involvement (PPI) has become an essential part of health research...

Abstract Background An integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient...

Thread on HADS here, https://www.s4me.info/threads/the-hospital-anxiety-and-depression-scale-hads-a-discussion.10160/

Background Undertaking Patient and Public Involvement (PPI) when developing health and social care research grant applications is critical. However, researchers may not have any funding to undertake PPI when developing grants. In response, the National Institute for Health and Care Research-...

"The majority of participants were women (72.1%), white British (68.9%) and not in full time work (78.3%), with 24.6% on long-term sick leave. Seizures (24.6%) were the most common primary FND symptom identified, with other subtypes broadly represented. The majority of participants (95.1%)...

Full title: Illness perceptions, experiences of stigma and engagement in functional neurological disorder (FND): exploring the role of multidisciplinary group education sessions Abstract Background A critical first step in managing functional neurological disorder (FND) is a positive...

Abstract The COgnitive behavioural therapy versus standardised medical care for adults with Dissociative non-Epileptic Seizures multicentre randomised controlled trial is the largest, fully-powered study to test the clinical and cost-effectiveness of a psychotherapeutic intervention in this...

Job description Summary: Job Title: Communications and Engagement Officer Reports to: Research Manager Salary: Up to £30,000 FTE Annual Leave: 30 days + 8 bank holidays / annum FTE Contract Type: Fixed Term Contract to 31st August 2025 Hours of work: Full time (35 hrs per week). We...

Thread on ETUDE here, https://www.s4me.info/threads/etude-encompassing-training-in-functional-disorders-across-europe.16016/

Abstract Endurance exercise leads to robust increases in memory and learning. Several exercise adaptations occur to mediate these improvements, including in both the hippocampus and in peripheral organs. Organ crosstalk has been becoming increasingly more present in exercise biology, and...

Abstract Background People with functional neurological disorder (FND) have abnormalities in sensory processing. Loss of ticklishness has been rarely reported. Objectives To describe associated clinical features in people with FND and loss of ticklishness and explore correlations with sensory...

Dave Tuller reports on Twitter that "Professor Esther Crawley apparently relinquished her right to practice medicine last September, according to the UK's General Medical Council, which oversees physicians. No explanation provided. 1/ gmc-uk.org/doctors/3545946"

Published papers thread for w/c 3rd June. Facebook: https://www.facebook.com/sci4me/posts/pfbid02qXAmA3JdCz9ERuBfwRcPtWunkKR4HRZQ4T1Q7epYJNpxe4yk1hT9nfnUaFELQAKWl Mastodon: https://med-mastodon.com/@s4me/112591835650713843

Unfortunately I feel that providing a figure that misrepresents the likely scale is as unhelpful. Issues with the CDC survey from the States that is used to calculate that number can be found here, CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States...