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That argument reveals such a failure of reasoning that I'm not even sure how to address it. I'm sure high blood pressure and stroke, or influenza and pneumonia have different codes, but nobody would use that to argue that one doesn't cause the other.

Do Psychological Factors Influence the Mass of Stars in Andromeda? 2022 Sun-Large et al

It's bizarre to call low or absent desire for sex a disorder. It's only a problem if it bothers you.

With Mild ME, but being quite bad at pacing, I got a SF36 PF of 35%. I might be closer to 40-45% now because I understand my physical energy envelope a little better, or perhaps I improved slightly.

The most salient point in his thread. We went from discovering SARS-CoV-2 to developing a vaccine for it in under a year, and we can pull off analogous feats for LC if the money and political will are there. We can rush science. It follows the same good, fast, cheap (pick any two) rule as...

This is exactly what the public needs to know about ME: It causes continuous, profound loss because pwME are unable to partake in activities that give them joy and meaning, the fact that symptoms worsen with exertion is torturous, and that the unpredictability of capabilities makes life even...

I began actively resisting that tendency when I realized it existed. I refer to my condition as ME or ME/CFS exclusively. I describe it briefly as a devastating disease, or say I'm chronically ill. When I was asked how days in the past year I was unable to do my normal activities, I said 365. I...

Which is why I'd never claim recovery until I was doing regular, intense exercise. Recovery is 100%, not 90%.

I hope the results will be published in one of the Intramural Study papers.

My mind is blown by the novelty of his points, and the clarity with which he expresses, then demonstrates, them. He makes some solid points: The best way to review science is to reproduce it. Carefully analyzing the data is second best. Peer review is more like a smoke test--"Does it smoke when...

I'm having trouble parsing this paper. They're comparing around 1,000 people who got Covid but recovered, and 1,000 who got Covid and had lasting effects. They conclusion about ME seems to be in table S3. There were more pwME in the long Covid group (1%) than the control group (<1%). I guess...

It's been 16 days since my Omicron booster (On Dec. 1). The positive side effects have kicked in at comparable frequency to the previous vaccines, albeit with more delay than I expected. When I got the shot, I had no side effects except a mildly sore arm. Gradually I found myself feeling better...

I'm skeptical here. I bet the psychiatrist applied the definition of anorexia very liberally. Mental healthcare is not always rigorous. I've been misdiagnosed with three mental disorders due to my ME: ADHD because I have trouble paying attention, generalized anxiety disorder because sometimes...

Are there any studies on how many calories people with ME burn? Is it slightly higher or lower than healthy people at rest? What about during PEM? I became idly curious when thinking about the concept of weight loss, but Google doesn't turn up anything.

Repeat Immunoadsorption Post Covid ME/CFS https://clinicaltrials.gov/ct2/show/NCT05629988 From Dr. Carmen Scheibenbogen's team at Charite University. Their summary: It's an observational study with no control group, so not rigorous. But after this study they want to do an RCT.

Encouraging people to accept their illness is hollow unless society has already done everything possible to prevent, treat, or cure it. It may be reasonable to accept that nothing can be done if you have a disease on which billions has been spent. But that's not true of many disorders, ME and FM...

Good point. Letting peME suffer costs nothing, but adequately supporting them is expensive. In America, the average person with multiple sclerosis incurs far more costs than the average person with ME, because there are drugs for MS, but they're very expensive.

Yes, the effectiveness of the current vaccines is disappointing. The CDC says the bivalent booster is around 40% effective for those age 18-49. (To find, Search 'Table 2'.) But that's a naturalistic study where I believe many of the unvaxxed had some immunity from previous infections. And...

Despite being steeped in confusing language, there's definitely a kernel of truth here. Many people with complex illnesses are disbelieved because it isn't visible, and this struggle to express their sympoms and feelings in a way others understand.

I knew of one person who experienced that. An ME/CFS specialist told her, "Don't join any support groups or you'll get worse." It's absurd. Joining support groups and reading ME-Pedia has helped me receive better medical care. Because of advocacy, I'm able to describe my illness in ways people...