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I sent a letter to my Senators Casey and Fetterman.

Your hypothesis attempts to account for every feature of ME/CFS, especially PEM, which is sorely missing from most hypotheses. I wonder what experiments could be done to prove or disprove this model. DecodeME might be helpful if it highlights certain immune pathways.

I don't understand what these people are even on about. If they did a HIIT workout and experienced no PESE, they don't have PESE...it's fine for them to exercise. Addendum: And when these people talk about PEM, they often have no idea what PEM even is. They're so narrowminded that they think an...

No real news. They're just trying to keep investors "in the loop" and build PR.

I don't drink alcohol but I'm also sensitive to caffeine. It's hit-and-miss. Sometimes a cup of black tea keeps me awake without side effects, but other times I get jittery.

I used to suffer from something like this. The cause was having the wrong balance of fun vs. work/stressful stuff in my life. Keep in mind that that balance looks very different because I'm autistic. I wasn't sad all the time, I just couldn't cope with my workload. I was dramatically functional...

I've been pretty tired at times, but my tongue has never hung down to the floor like that.

I can't do tasks because you simply don't have the energy. I try to start things, but tell myself I will rest a few minutes first, and then hours pass. (Often, time seems to pass quickly.) You have the motivation and drive for things but just can't start them or stay on track. However, you don't...

We can't cure ME/CFS...but can we at least cure ME/CSF? Haha

Agreed. This paper is mediocre, but it's in the realm of biomedical, not biopsychosocial, research. Let's use it as a starting-off point. "We appreciate the attention you paid to ME/CFS but this isn't enough to lead to treatments that really help us. We'd like further work, like higher funding...

You can't find technical solutions to problems with people.

This paper is a solid example of good psychosocial research into ME.

This is a very important study. It shows that telling people with ME/CFS that their illness is psychosomatic makes them suicidal.

If DecodeME provides good results, I wonder if there would be any benefit to an even larger GWAS in the United States or the US plus several more countries. We have a larger population to pull from. Also, I wonder if it would help that we're more racially diverse. There might be genes that are...

After taking some time to read the study, I can conclude there are good parts and bad parts. The NIH was quite thorough and delivered additional evidence that ME/CFS is biological. Many of their findings point to the immune system, others point to the nervous system. On the balance, this study...

The TV segment Channel 4 did is very well done, I'm grateful to the show's producers in addition to Clare Norton and Sean O'Neill for telling their childrens' stories.

Acculighture.

Thank you for getting this message out. Biomedical research is what we truly need.

I think this is good news. I was very annoyed when I heard that nanoneedle wasn't going anywhere because of funding. Now let's see if this is for real.

Long COVID research goes private https://www.npr.org/2024/02/06/1229602764/long-covid-research-goes-private NPR segment discussing how there's an increasing amount of privately funded LC research. They talk to Amy Proal and others.