People with myalgic encephalomyelitis (ME) have significant genetic differences in their DNA, according to a preprint shared this week from the DecodeME study. The post Research updates, August 12 first appeared on The Sick Times.| The Sick Times
This was a moving podcast for me. One of host Sucandra’s questions took me to a vulnerable place I haven’t shared in public before and I cried as I felt the grief of a caregiving experience I’m having this year (starts at 29:06 minutes). You can download the transcript for this podcast at the bottom of this summary. Sucandra asks whether there are trauma links to leading causes of death such as heart disease and cancer. Continue reading An Unexpected Approach for Triggers and Anger in C...| Chronic Illness Trauma Studies
Learn more about this year’s project| #MEAction Network
The University of North Carolina closed its Long COVID clinic last week after its federal funding ran out. It was the sole Long COVID clinic in North Carolina. The clinic has been a lifeline to thousands of people living with complex conditions often triggered by infection, including Long COVID, myalgic encephalomyelitis / chronic fatigue syndrome … Press Release: UNC Closes its Long COVID Clinic – the Only One in the State Read More » The post Press Release: UNC Closes its Long COVID ...| #MEAction Network
As we navigate the complex realities of energy-limiting conditions like M.E, we can sometimes find ourselves at the crossroads of language and lived experience| ME Foggy Dog
From Jaime Seltzer over on Bluesky: Please call for this one, guys, this is a horrific turn. There is something at the core of these folks that cannot accept patient narrative as a source of real data. They revert to default tropes about exercise rather than listening, or reading up-to-date […]| The Science Bit
Believe it or not, Paralympics GB has made one of its own campaigns inaccessible to over four million disabled people| Canary
August is Gastroparesis Awareness Month. However, two conditions gastroparesis is often found in are also often overlooked: EDS and ME/CFS.| Canary
Earlier this year, I wrote about a draft academic paper that had attempted to condemn the new NICE guideline for ME/CFS. As regular readers might recall, the paper had claimed that NICE was guilty of “eight major errors” in its guideline reviewing processes. In my blog post I noted that […] The post The cries for help are getting louder. And that’s a good sign appeared first on The Science Bit.| The Science Bit
Colleagues and I have responded to a paper in Der Nervenarzt, the leading German neurology journal, pointing out various reasons why its “overview” of evidence-based approaches to ME/CFS treatment lacked, well, evidence. Our critique can be read in full in English via the following Tweet (kudos to @AnilvanderZee): In summary, […] The post “A science that does not allow opposing opinions abolishes knowledge.” Er, kind of appeared first on The Science Bit.| The Science Bit
Earlier this month, on World ME Awareness Day, I spoke at the Hope 4 ME & Fibro NI conference in Belfast. The event was hosted in the Stormont Parliament Buildings by Alliance Party MLA, Paula Bradshaw. The title of my lecture was Getting it Right: Addressing Myths about the 2021 […] The post Getting it Right: Addressing Myths about the 2021 NICE Guideline for ME/CFS appeared first on The Science Bit.| The Science Bit
David Tuller has been conducting a series of interviews on YouTube relating to science, medicine, and medical controversies relating to ME/CFS and Long Covid. I was pleased to discuss with him my recently published book and, for good measure, the issue of dualism as it affects the psychologising of illness. […] The post Talking to David Tuller about dualism appeared first on The Science Bit.| The Science Bit
Here is what I will be doing today: Translation: Welcome: ME Seminar On International Women’s Day, we draw attention to a disease which affects women to a high extent. Almost 80% of those who fall ill with this disease are women. We are talking about ME which is a serious, […] The post Where I speak to colleagues in the Swedish parliament… appeared first on The Science Bit.| The Science Bit
“No one comes up here without a damn good reason.” * * * Regular readers will recall that I have previously written about the UK’s new healthcare guidelines for ME/CFS, as published by the National Institute for Health and Care Excellence (NICE) in 2021. Whereas the old guidance had proposed […] The post Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS appeared first on The Science Bit.| The Science Bit
Here is a transcript of my recent podcast with the Norwegian ME Association. In the interview, we discuss the medical stigma where post-viral illnesses, such as ME and Long COVID, are falsely characterised as ‘psychological’ due to poorly grounded stereotyping. The discussion touches on how medical opinion has become intertwined […] The post ME, Long Covid, and the History of Medical Stigma (Transcript) appeared first on The Science Bit.| The Science Bit
I recently had the pleasure of talking with the folks at the Norwegian ME Association for their (excellently produced) podcast series. Arising from my new book, we discussed the medical stigma in which an illness is falsely characterised as ‘psychological’ — post-viral conditions such as ME and Long Covid, for […] The post ME, Long Covid, and the History of Medical Stigma (Podcast) appeared first on The Science Bit.| The Science Bit
Just the other week, I spoke at the annual conference of the RME, the Swedish National Association for ME. In my lecture, I took another look at the new ME/CFS guideline as published by NICE about one year ago. While I covered ground that might be familiar to some, it […] The post Another look at the new NICE guideline for ME/CFS appeared first on The Science Bit.| The Science Bit
Historian David Olusoga has been speaking about the ironies of ‘cancel culture’: Olusoga, whose work has explored black Britishness and the legacy of empire and slavery, said that people “feel perfectly comfortable making these comments about me without being able to point to a single reference or footnote in my […] The post ‘Cancel culture’ paranoia and other right-wing hysterics reveal medical conservatism’s true colours appeared first on The Science Bit.| The Science Bit
Let’s have another go, shall we? Last December we wrote about a paper published in Occupational Medicine, in which the following information was presented in a table: The study concerned a group of patients who were scrutinised at two time-points, firstly at “baseline”, and secondly at “follow-up”. That is basically […] The post Authors defend statistical errors, editor sees no evil appeared first on The Science Bit.| The Science Bit
Just last week I gave a presentation to the Norgewegian ME Association on how the new treatment guideline for ME/CFS is rooted in scientific evidence and reasoning. The video has now been posted: By way of a teaser, here is the title and background info for the talk: The New […] The post The New NICE Guideline for ME/CFS (2021): Following the Science appeared first on The Science Bit.| The Science Bit
I used to be concerned about bad science. These days, what gets me going is wrong science: blatant error somehow surviving peer-review and ending up published as if it were fact. It seems that is where we have got to with modern academic publishing. Standards have slipped so badly, even […] The post Will innumeracy cause this study to be retracted? Don’t count on it… appeared first on The Science Bit.| The Science Bit
Some examples of comedy are jarringly impactful precisely because they feel so authentic. A personal favourite of mine is the 1984 movie This is Spinal Tap, the legendary mockumentary depicting a fictional English rock band attempting to rescue their dwindling reputations by organising one last big-splash concert tour. It is […] The post Psychogenic ME/CFS: Turning the Nostalgia Up to Eleven appeared first on The Science Bit.| The Science Bit
Whether to laugh or to cry, truly that is the question. Professors of psychology can be a strange breed. While some are blind to their own faults, others are are obsessively self-critical. Perhaps this is why the field of psychology has been described as being “in crisis” since (at least) […] The post “The problem may well be that some of our treatments are too evidence based” appeared first on The Science Bit.| The Science Bit
Having spent years casting their critics as angry anti-science activists, some of our favourite panjandrums have now entered Phase 3 in their own year-long campaign of (a) getting angry, (b) engaging in activism, and, yes, (c) throwing science-based medicine under the bus. Here is what the Royal College of Physicians […] The post Self-styled medical leaders defend “neurolinguistic processing” as legit treatment for ME/CFS appeared first on The Science Bit.| The Science Bit
The coroner in Maeve's case has made the situation for everyone living with this devastating and potentially deadly illness| Canary
Thursday 8 August was Severe ME Day. After eleven years of annual events marking it, advocacy only reinforced just how little has changed.| Canary
Monday It started on Monday afternoon. I received a message from my kid’s primary school – ‘someone in your kid’s class has tested positive for corona virus, your child must…| Riko's blog: PDA and more.