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Podcast: Things Fell Apart by Jon Ronson How a chance encounter in a yacht club in the early 2000s between a bartender [Judy Mikovits] and a very wealthy couple with a daughter sick with a mystery disease [CFS] ended with the creation of the first great covid conspiracy theory...

Coincidentally to our release of the second questionnaire, two case studies about patient representation in research have been published following discussions that Chris Ponting and I had with someone from the UK Research Institute. Representing public voices in a research study The patient...

The tweet, from the CureME team, says "We're starting the new year with over 100 new participants! However, our research relies on the comparison between #MECFS patients and healthy controls to uncover vital insights. Volunteer as a healthy control to support #pwME https://bit.ly/48pLMPT"

Overview The Medical Research Council (MRC) invests public money in research which aims to improve human health. Living healthily for longer concerns every one of us, no matter our background, upbringing or the communities where we live or work. We are consulting on MRC’s draft strategy for...

Email invitations are now being sent out today to existing participants. This is being done in batches, so there is no guarantee of when exactly you might receive it but the plan is to have sent them all by the end of this week. If you don't see it by the weekend, please do check your spam/junk...

Trial By Error: Dutch Study Links PEM in Long Covid to Biological Abnormalities A new study in Nature Communications, called “Muscle abnormalities worsen after post-exertional malaise in long COVID,” caused a stir after it was published last week. The investigators identified significant...

Knoop is one of the authors. Participants Ninety-four female ME/CFS patients, between 18 and 65 years old, that met U.S. Centers for Disease Control (CDC)-criteria for ME/CFS (revised in 2003) (Fukuda et al., Reference Fukuda, Straus, Hickie, Sharpe, Dobbins and Komaroff1994; Reeves, Lloyd, &...

"Dear Elsevier (publisher), Petition to request updating of the description of ME/CFS in Kumar and Clark’s Clinical Medicine textbook. We the undersigned, request that the next edition of Kumar and Clark’s Clinical Medicine, due in 2025, addresses the following 5 points:" Details and to sign...

Full title: Exploring the central mechanism of mind-regulation electroacupuncture in treatment of chronic fatigue syndrome with anxiety and depression comorbidity based on functional magnetic resonance imaging Objectives: To observe the changes in the regional homogeneity (ReHo) and functional...

Objectives: To observe the clinical efficacy of acupoint massage at Shenque (CV 8) for chronic fatigue syndrome (CFS). Methods: A total of 71 patients with CFS were randomized into an observation group (36 cases, 2 cases were eliminated, 3 cases dropped out) and a control group (35 cases)...

[In mice] Abstract Objectives Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a significant medical challenge, with no indisputable pathophysiological mechanism identified to date. Methods Based on clinical clues, we hypothesized that 5-hydroxytryptamine (5-HT) hyperactivation...

Published papers thread for w/c 1st Jan 2024 Facebook: https://www.facebook.com/sci4me/posts/pfbid035hDX1tsvBPDyLSG6JAXfeJtebXYu8gr8ZMkWmC5kWdoa24ZMTikKDkBuKtBaV3Zwl Mastodon: https://med-mastodon.com/@s4me/111719858275285361

Todd seems to be open to feedback but not in the sense of it being a round of specific feedback seeking in order to improve the questionnaire. But then we've seen all of this before with other questionnaires, unfortunately.

Todd Davenport has explained on Twitter that the severity scale is the Bell CFIDS Disability Scale. I've sent feedback to him, making various points, including this on the "important activities" section, * "How well can you complete this activity in this moment compared to a "good day?””...

News in Brief posts for w/c 1st Jan Facebook: https://www.facebook.com/sci4me/posts/pfbid02Gx5KTRwhZn3zMwd2xvPyHLpBU2rvkW9w7FnA97bruoiiFsL4jTN2MgvoBQkU5dDKl Mastodon: https://med-mastodon.com/@s4me/111714192902357304

The questionnaire is available here, https://pacific.qualtrics.com/jfe/form/SV_aUZNZUGGbcZnQBU Todd Davenport on Twitter "The PEM/PESE Activity Questionnaire (PAQ) is one of the first tools developed to measure disability associated with PEM/PESE. It is now available for personal use. Please...

"9. Conclusions In this review, we have discussed published CTs in ME/CFS that have occurred over the past 33 years targeting immunological, metabolic, GI, neurological, and neuroendocrine disturbances in ME/CFS patients. Rintatolimod [Ampligen] is the standout and the only current example of a...

Full title: Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspectives Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, debilitating, and multi-faceted illness...

I would guess he is trying to lay the ground for the "of course there is something going on in the body but it's how the brain interprets it that is the problem" line of psychobabble hardware/software, 'definitely not cartesian dualism' waffle.

They rely on poor research to support their own theories, which logically must mean that either they can't do better, so would be unable to critique other research, or they are aware of the poor nature of their own research and don't want to point out flaws in research that most likely already...