I have only seen one study that evaluates the risk of long Covid in people with ME: A preprint called "Severe acute infection and chronic pulmonary disease are risk factors for developing post-COVID-19 conditions 2022" (S4Me thread, preprint).
They estimate that people with ME/CFS have 4.69x...
Some people feel pressured to use a definition of health that conforms to social biases, where life-threatening, well-understood, stable, visible, and physical conditions are considered more legitimate than their opposites. Others would share my view. My health is obviously poor because I often...
This is the first completed blinded LC treatment trial I recall seeing. We're turning a corner here. 75% reduction in shortness of breath score? Wow.
8 people is too small to be "pivotal." But I believe it's a valuable study. We need a larger trial ASAP. With these impressive results, getting...
It's hard to say because autistic people both have different brains and must expend more effort to function in a society not built for them. I think the cause and course is similar, but that the presentation of autistic vs regular burnout may vary.
This is crucial for developing scales for ME research. It must be multidimensional. We need ways of asking:
Can you do this activity always, on good days, or never?
Can you do it repeatedly, or do you need time to recover? How long?
How incapacitated are you while recovering?
How miserable are...
The SF36 is good enough to be trustworthy in a blinded trial. It's generic but that's OK because ME has such a broad impact on our functioning.
The other tool we have is the DSQ. The SF-36 uses ability to do tasks as a watermark, and the DSQ uses symptoms. My gut says ability to do activities...
Miscellaneous thoughts on this:
I've experienced both autistic burnout and ME. The two are vaguely similar. Autistic burnout consists of reduced mental functioning and fatigability. Emotional symptoms like irritability or depression secondary to stress can occur. Trouble with sensory processing...
Oh, yeah, I experienced a lot of psychosocial distress worrying that all the computers were gonna crash...when I was 4 years old and 17 years before I got sick.
That's hilarious. I heard about ME/CFS twice in my life before I had it. The first time was a PSA when I was around 10. The second was...
Very, very few clinicians would have understood PEM in the early 2000s. Today we know they badly messed up by giving people rigorous rehabilitation. However, it's bizarre that the author doesn't talk about PEM in retrospect.
The video asserts that Covid vaccination carries a significant risk of major harm to people with ME or long Covid, but utterly fails to prove it. Its major errors are conflating side effects with serious harm (such as chronic or permanently increased disability), citing evidence of poor quality...
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