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...
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...
Message from the moderation team:
With the support of the committee, the moderation team has decided to permanently close the 'Coronavirus - Worldwide Spread and Control' thread, and not allow further posting of, or discussing, data on infection and death rates around the world, and discussion...
Great points on this thread.
If these people wanted to delve into family relationships in a useful way, they could look at what happens to families when a child gets either ME/CFS or another similarly debilitating chronic illness. i.e. rates of marriage breakdown and decreased extended family...
One of the criteria to be included in the 'Target Population' was 'PEM lasting more than 24 hours'. The participants in the non-target population presumably either didn't have PEM or had PEM that lasted less than 24 hours. It's not clear how the PEM criteria was determined, but it looks as...
Here are the scatter plots so you can make up your own mind.
The first one is for the so-called 'target population', the second one is for everyone else. Illness duration is on the x axis, with different scales for each chart. % change in the time on the treadmill (from baseline to end of...
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