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Copied from UK news Opinion piece in the BMJ Hancock’s covid inquiry evidence offers few clues as to why long covid was sidelined Questions remain as to why long covid wasn't a political priority, writes Ondine Sherwood In the early weeks and months of the covid-19 pandemic, it was left to...

So how do you then suggest we study it? Please could you describe how "PVFS with delayed symptoms" was different to "ME/PEM"?

So in all of this talk, of claiming to 'demystify' LC, has there been any mention of ME/CFS? And what she doesn't say is that some of her colleagues in the research and medical systems will be the ones taking advantage of the uncertainty, by making up such things as the deconditioning model for...

Full title: Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients. A qualitative public health study from a patien [sic] perspective Background: Most patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are dissatisfied with...

I'm of the opinion that basing research strategy on individual anecdotes or assumptions, especially when they run counter to the experiences of so many other people, is not what we need to do at this time. If PEM is to be researched, and it should be, then lets research PEM, then we can...

The process of measuring what ends up being up PEM when we go beyond our limits certainly could start before the patient participants experience symptoms, but without evidence that the process ends up being PEM then claiming the process is PEM could well be misleading. In most case definitions...

I think that most of us identify PEM as being something that occurs when we have gone beyond our limits, so it would be hard to study PEM without doing so.

From DecodeME social media channels. "Join us for our #DecodeME December Webinar next Thursday for project updates, 2nd questionnaire info and ‘what is happening to your data?’. Email contact@decodeme.org.uk with any questions you have for Sonya, Chris and Andy. To sign up...

9,601 signatures at time of posting. https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

Is AI leading to a reproducibility crisis in science? "During the COVID-19 pandemic in late 2020, testing kits for the viral infection were scant in some countries. So the idea of diagnosing infection with a medical technique that was already widespread — chest X-rays — sounded appealing...

I would argue that energy impairment will impact on all of that.

Sex is an exertion, just like walking, concentrating, or anything else that might require a certain level of energy. So if someone has a condition that reduces their energy levels, that will have an impact on their sexual function. So no surprises but important that is is investigated, and I'm...

For those who can't see the tweet, it is of a poster presentation of the results from a study into risk factors for Long Covid. "*Important long Covid study results from Scotland:* Researchers followed up 1.1 million people after Covid to see if anything reduced the odds of #LongCovid & found...

I understand why they are used but the problem with standardised doses of exertion in research of pwME is that different levels of exertion will have different effects, depending on how seriously, or not, each participant is affected and their normal activity level. Particular towards the mild...

The authors biases?

So questionnaires that ask, in part, about fatigue, are found to be good indicators of.... being fatigued.

Objectives The study aimed to evaluate the level of fatigue and the relationship between mood, pain, fibromyalgia, insomnia, disease activity, and dryness with fatigue in primary Sjögren’s syndrome (PSS) patients. Patients and methods In this case-control study, the participants were recruited...

ABSTRACT Objective: To quantify and compare associations and relationships between self-rated and tested assessments of mainly mobility-related physical function in different diagnoses. Design: Six longitudinal cohort studies before and after inpatient rehabilitation. Patients: Patients with...

Trial By Error: Dutch Survey Respondents Rate GET/CBT as “the Worst” Approach, Per New Report "A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the worst” interventions, according to an article on the site of the ME...

The protocol says that recruitment will last until end of Q2 2023 so I doubt that this is still open.