Best of luck!

Or ME pre-covid.

"Major Depressive Disorder, which comes with all the symptoms of ME/CFS except PEM,"

That's my point - it doesn't.

And although I should feel pessimistic about our future as ME patients, I'm stubbornly optimistic about future treatments. And there's many in the online ME communities I frequent that have a very similar if not identical experience as me.

I do not feel worthless or guilty. I look forward to future events (even if the scope of that is know smaller due to my physical limitations). I am not anxious nor do I feel empty. I have not lost interest in my hobbies. I do not have a reduced sex drive.

I experienced depression for about 6 months in my teens when I went on a contraceptive pill. It resolved as soon as I stopped taking it so IME, depression is very very different to MECFS. I do not experience low mood or loss of appetite/joy. My sleep is mostly normal and now only impacted by peri.

Second MS. I once listed my symptoms to a nurse not educated in MECFS and she said "that sounds remarkably similar to MS".

If you use an alternative device which you'd recommend, please let me know in the comments. Thanks. And please share this post so more people can be aware of this - I only noticed as someone else flagged it yesterday.

Several people have contacted Visible directly about this, only for the company to publish an inadequate response. Nobody is asking them to vet every study that comes through. But if one is flagged as dangerous to the community it proclaims to serve, there should be a committment to reviewing it.

Also what a missed opportunity from them to work with the patient community. They don't need staff to monitor for problematic studies because they have us and literally dozens of us have reached out to them. To me it speaks volumes that they don't trust us.

I did learn CrunchME has a database of trials with the biopsychosocial (BPS) researchers filtered out.

Link to site mentioned in screenshot:
crunchme.notion.site/clinical-tri...

Source for screenshot: x.com/wecrunchme/s...

Why has MECFS been tagged in this?

I'm not sure what you're asking. Could you be more concise?

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