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My PEM may have changed too, but it's hard to say if it's a difference in what symptoms I had, or a difference in what I noticed. But in the first few months of my illness, it was odd neuro symptoms. My mind was "jittery" or "glitching". It sort of felt like I was trying to think, but I was...

I mean, hey, if you don't have PEM, knock yourself out. But I doubt it will be curative. Lifestyle changes like exercise tend to be about managing, not curing, a chronic illness. Disappointingly, this paper doesn't explicitly say PEM is a contraindication for exercise. But they're at least...

I'm very proud of my government talking very seriously about ME/CFS and long Covid.

This paper is full of solid recommendations. One thing that stood out to me was their recommendation that there should be 2-4 ME specialists per 1 million population. This sounds low, but that would be equivalent to 660-1320 ME specialists in America or 134-268 in the UK. There would be at least...

It's not at all wrong for Dr. Komaroff to refer to the connections between ME and LC as "emerging." It's a condition that's less than three years old. That's an eternity for people who are suffering, but not long for science. LC is far newer than most other diseases, which are probably as old as...

What's the deal with Denmark? It's really a shame that they're so stubborn about ME being a real illness. Heck, even the UK seems better. At least in theory, they have solid guidelines. The CDC's website straight out says ME/CFS is a biological condition. But Denmark is really stuck with all...

The use of sedentary controls is a big deal. They're at least trying to eliminate the potential effect of activity level. While the average sedentary control will be less active that the average pwME, it's still a step towards rigorousness.

That's good to know. I didn't know because I don't get lymph node swelling or tenderness as an ME symptom. I have experienced sore lymph nodes at times, but only when a healthy person likely would as well. For example, if I get a cut in my mouth (presumably my immune system is reacting to the...

I like it, it sounds pretty rigorous.

Looking at all these facts and definitions hasn't taught us much. My conclusion is the same as before: Whether you need psychological help depends on whether you feel the time you spend on your illness is helpful or harmful. There are multiple factors, but in general, the time I spend on my...

This is brilliant. Do swollen lymph nodes usually happen during PEM? (Sorry, I don't have this symptom.) Then you can do a study with healthy controls and pwME doing a CPET and seeing how much their lymph nodes swell.

October 1 has passed, which means that in the US, the new unambiguous code for ME/CFS is available for use by clinicians.

What about swollen lymph nodes?

I will come up with a more detailed response when I have time, but this is all very informative. This further convinces me I was misdiagnosed. I always got the impression my psychologist just put that on my chart to help me get disability.

The fact I've been diagnosed with somatic symptom disorder got me thinking. I'm not asking for medical advice, but for general information. The current definition in the DSM-5 revolves around excessive thoughts, feelings, or behaviors related to symptoms. And it doesn't matter if these symptoms...

Agreed. A meta-analysis of low-quality trials will be of similarly low quality. If all the studies have systemic bias, combining them can't help. Garbage in, garbage out.

Their criticism is thorough and damning.

A Novel Approach to New Types of Novel Novelty Blog post by Derek Lowe https://www.science.org/content/blog-post/novel-approach-new-types-novel-novelty The comments discuss limitations in the knowledge of grant application reviewers, and how scientists may hype up how new something is because...

Here's some context: This paper describes how the ME/CFS Priority Setting Partnership decided on their priorities. I'd say their approach to coming up with priorities was sensible and inclusive. Their priorities are quite good too. Very similar to where I'd prioritize research.

This concept seems pretty similar to what we have in the US. Dedicated centers for doing testing on outpatients are common here. They're sometimes affiliated with local hospitals, but not always. Sometimes testing is done there, sometimes it's done at a hospital. For example, the last time I...