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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...

After all these years the only recommendation for PEM is pacing.:(

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...

At least they're being humble rather than flaunting their hypothesis as nearly proven.

The argument Shure offers here is very old: Long Covid is just a manifestation of psychosocial distress. In the video, she never bothers to provide any evidence for this, besides mentioning that terrible study ("Association of Self-reported COVID-19 Infection and SARS-CoV-2 Serology Test...

Here's a good transcription. The video is bad to the point most people will find it somewhat offensive. The video in question: Taylor Lorenz, Critics HYSTERIC Over Long Covid Psychosomatic Possibility: Robby & Batya (I'm not opposed to link things I disagree with. In order to criticize, we...

What can I say? They're arguing a garbage position, citing the same old garbage papers. The good news is that BPS LC researchers are a minority. I find papers that attribute ME or LC to psychological causes pretty offensive because I've been personally harmed by diagnostic overshadowing. When I...

In the US, if you earn above a certain amount, your benefits eventually stop. But your earnings never reduce your benefit amount. (This is for people who are receiving disability benefits based on their work history. For people who didn't/couldn't build up a career before becoming disabled...

We've done that in the US for a long time. If you're receiving SSDI and you return to work, you continue receiving full benefits for 9 months. If you stop working after less than 3 years, your benefits are reinstated immediately and if it's under 5 years, you need to reapply, but under a simpler...

It absolutely is. There's degrees of evidence, you know. The studies recommending GET are (at best) collections of anecdotes. The sources recommending against CBT/GET or claiming ME is a real illness are clinicial practice guidelines, generally accepted as the strongest form of medical evidence.

That might be "good enough" here.

Effect of Lithium Therapy on Long COVID Symptoms https://clinicaltrials.gov/ct2/show/NCT05618587 News Coverage: Could low-dose lithium treat long COVID? UB launches clinical trial to find out https://www.buffalo.edu/news/releases/2023/01/002.html Context: Dr. Guttsuo at the University of...

I'd disagree we've learned nothing in 3 years. We've gathered many statistics on the prevalence and symptom picture of LC. We've determined that Covid affects the brain's structure in specific ways. We've found some signs of immune dysregulation. However, your frustration is understandable...

Physical activity is great and whatnot but we can't claim it's a cure-all. Lifestyle interventions difficult to stick to, and only provide some benefit so need to be combined with medicine. We know PEM is a common long Covid symptom and one of the few medical reasons not to exercise...

That would be similar to what the US does for people claiming Social Security Disability Insurance. You don't see a doctor from Social Security unless your medical records are spotty.

They found that vaccination protects against long Covid: 1 dose: No significant difference 2 doses: 70% as likely as an unvaccinated person 3 doses: 32% as likely 4 doses: 3% as likely Almost all these people got the AstraZenica vaccine, which is common in the UK but not the US. (See the...

I'm going to die alone, destitute, and in squalor after decades of intense and unremitting suffering because scientists research this instead of treatments.

I highly appreciate that they mentioned intimacy as an area of life affect by LC. (Link to video at 1:03) The effect of my illness on that part of my life has been the most emotionally impactful loss for me.

So people have a lower opinion of their own abilities when they're in a bad mood? What a waste of money. People with FM need basic and translational biomedical research that will yield new treatments, not psychosocial frittering.