Search results

They've lost the ME/CFS battle, but there's still the MUS war. In fact it's not even a war- it's more like a largely uncontested MUS occupation with the occasional bit of guerrilla 'sniping'. And then there are the new territories of post-Covid-19 to expand into. (edit to remove a mixed metaphor).

I agree that there's still scope for GET-like therapies to be promoted as meeting the guideline. But the guideline does stress that energy should be allocated to activities of daily living before exercise, and there's a good focus on physical maintenance rather than exercise. I don't think...

Terrific content about providing practical assistance: There's more about assistance for carers, social care needs assessments, and content on safeguards that may stop allegations of parental abuse:

It is great, but there will be stuff for us to comment on too. e.g. i.e. CBT being mentioned (albeit as part of a list of possible management actions), when supportive counselling is not.

The draft guideline is available for comment!!! (yes, a departure from my usual disdain for exclamation marks - some things warrant them) Here's the main thread, with reactions to the draft guideline...

I have been thinking that the possibility of Long Covid is potentially a powerful tool for getting people to comply with regulations to limit the spread of Covid-19. I've been wondering why publicity about Long Covid hasn't been used more in those countries that have been actively trying to get...

It doesn't look like a problem that some education by informed advocates can't solve. Videos of people with severe ME are pretty compelling for example. Overall, it sounds positive to me.

I thought this was a terrific article, one that is good to send on to people to explain both the reality and likelihood of post-Covid symptoms. It's true that it doesn't mention ME/CFS, but it does talk about a diagnosis of 'post viral fatigue after Covid'.

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-019-2235-z Naomi Petra Moller, Gemma Ryan, Jasmine Rollings & Michael Barkham Abstract This commentary examines publicly available information on 2017–2018 outcomes in the UK government’s Improving Access to Psychological...

There's a thread for the first paper mentioned, with the astonishing statistics about patient dropout prior to and during the first two IAPT sessions, here: Predicting patient engagement in IAPT services: a statistical analysis of electronic health records, 2019, Davis et al And a thread for...

doi:10.1136/ebmental-2019-300133 Sci-Hub Alice Davis, Theresa Smith, Jenny Talbot, Chris Eldridge, David Betts ABSTRACT Background Across England, 12% of all improving access to psychological therapy (IAPT) appointments are missed, and on average around 40% of first appointments are not...

Changes in DNA methylation profiles of myalgic encephalomyelitis/chronic fatigue syndrome patients reflect systemic dysfunctions, Helliwell et al 2020 Another paper from Professor Tate's small team in Dunedin, this one on epigenetics.

Overall, compared to previous NIH Telebriefings, I thought this one was a lot more constructive and less frustrating. It seemed more respectful of the patient community. Progress is still terribly slow, and funding still horrendously inadequate. But perhaps post-Covid is making a difference...

Alison Kanas - Community Outreach and Engagement, Centre for Solutions for ME/CFS, Columbia University Alison thanked everyone who had contributed to the Microbe Discovery Project. It helped Columbia demonstrate community engagement and be selected as a CRC. Columbia had made a website...

There will be a transcript available, but here are some brief notes, that may or may not be entirely accurate: Koroshetz - NIH Showed some slides on studies of post-Covid symptoms e.g. a recent Spanish study finding 55% of hospitalised patients had fatigue after 3 months, with there being no...

From outside the UK, it looks as though there are a lot of organisations. Is that the case for other diseases e.g. multiple sclerosis, Parkinsons in the UK, or do they tend to have one strong, consolidated national organisation? I wonder if the ME Action group could find a place within one of...

This starts soon

From the Vallings report. First, I can't politely say what I think about Violetta Renesca's well-meaning efforts to improve the self-efficacy of people with ME/CFS, other than, 'has she not heard of the placebo effect and its influence on subjective outcomes?' Second, it's a shame that...

Thread on a review of leptin, in progress in South Australia: Circulating leptin levels in patients with [ME], [CFS] or fibromyalgia a systematic review protocol, 2020, Musker et al

Authors: Musker, Michael1,2,3; McArthur, Alexa2; Munn, Zachary2; Wong, Ma-Li1,3,4 1 Mental Health and Wellbeing, South Australian Health and Medical Research Institute, Adelaide, SA, Australia 2 The Centre for Evidence-based Practice South Australia (CEPSA): A JBI Centre of Excellence...