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"Full adherence to the REGAIN intervention was defined as attendance at the initial one-to-one session along with completion of four or more of six support sessions and five or more of eight exercise sessions. Partial adherence was defined as attendance at the initial one-to-one session and...

BMJ Editorial, https://www.bmj.com/content/384/bmj.q20

Abstract Background Long-term stress causing altered hypothalamic–pituitary–adrenal (HPA) axis dynamics with cortisol dysfunction may be involved in the pathophysiology of functional somatic disorders (FSD), but studies on adolescents with multi-system FSD are lacking. Therefore, we...

A nice bump up to 10,246 signatures at time of posting. https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

Abstract After the SARS-CoV-2 pandemic we face a new global epidemic: the Post-COVID Syndrome. This novel condition has fluctuating progression and a wide range of symptoms, such as fatigue, headaches, muscle pain or breathlessness. Although its pathophysiology is not clear, a multiorganic...

Published papers thread for w/c 29th Jan. Facebook: https://www.facebook.com/sci4me/posts/pfbid032fBj2tuwiFjfYk3ETaTPRgQ64cEEHzNfDTtmpAuuQFohG5gKie8C8zhfCL4En17Wl Mastodon: https://med-mastodon.com/@s4me/111878106731558766

To which they responded "Our website is currently under construction. There you will find more information and a registration form for the conference. In the meantime, you can contact us at mail@unitetofight2024.world" I will wait to see what information they present to the public.

I have just asked "Hi there. Do you have a website, or other source of information, with details on who is organising this, when and where it will be, how much will be needed, etc?"

A couple of more tweets from them. "Have an idea that needs the spotlight? Here's your chance! Recommend a topic for a public session! How ? Post your own tweet, mention your topic, and use #UniteToFight2024. The most mentioned topic takes the stage! at our global conference Let's shape...

Rather than good day/bad day testing, we need good week/bad week testing, and ideally even longer. Without this kind of longitudinal testing, it would be impossible to be sure whether the participant was at their normal baseline before any specific challenge. And, based on the concept that pwME...

Looking at their Twitter account, it lists a link to a Paypal account, https://www.paypal.com/paypalme/UniteToFight, which gives the opportunity to send money to someone called Marco Wetzel, but doesn't offer any further information.

Seems more than a bit odd that there is no available information as to who is behind this, especially as they seem to be expecting to fund it all via crowdfunding, which essentially will mean the patient community. I look forward to learning more.

Our DNA can help to decipher some of the most pressing health challenges we face.  Most diseases start in childhood, but most health research is carried out in adults. D-CYPHR wants to change this by supporting health research for ages 0 – 15, pioneering new treatments and creating better care...

News in Brief posts for w/c 29th Jan. Facebook: https://www.facebook.com/sci4me/posts/pfbid02rASvQkjyJTZtYTKnpnWkeGF3ag5mWciMPxxqbvmFe2cFXSG6hz1jk5FCYRacMxPql Mastodon: https://med-mastodon.com/@s4me/111872796216358639

Any kind of measurement of the participants in the time following the challenge that is presumed to trigger PEM. It might be by simply recording activity levels in some way (diary form, activity trackers, etc) or be more involved with any form of biological testing (blood test, brain scans, gut...

As per title. Have research studies that, in theory, are meant to be looking at PEM in pwME actually tried to measure PEM or have they only measured the response to the challenge (typically CPETs) that are intended to trigger PEM? Is there a difference between this response and PEM and, if there...

Abstract Objective To assess the burden of illness of people with fibromyalgia (FM) and their spouses compared with selected match populations in Denmark. Methods Population-based, cohort case-control study using data from Danish registries from 1994 to 2021. Individuals with an FM diagnosis...

Full title: Effects of a randomized-controlled and online-supported physical activity intervention on exercise capacity, fatigue and health related quality of life in patients with post-COVID-19 syndrome. Background The Post-COVID-19 syndrome (PCS), which can occur after acute respiratory...

Afraid I can't answer those questions - I just saw a number of patient advocates whose opinions/judgement I trust sharing this on social media so thought I would boost awareness of it a little by posting here.

[All Google translated.] We adults and children with post-COVID and our loved ones note that: GPs and specialists cannot adequately help us with complex multi-system complaints because they are not aware of the available knowledge and appropriate treatment processes are therefore not...