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I have begun to wonder if there might be multiple switches that cause a similar response (i.e. ME/CFS). About a week after one of my last periods I felt that icky, flu-like feeling begin to lift about 9pm on a Friday. By Sunday I was out on my balcony repotting plants--something I'd struggled to...

Perhaps I'm being a right cynical bastard here, but is the issue that they can't copyright FUNCAP and charge licensing fees for it? Am I mistaken (and I quite likely am) or does the Chalder Fatigue Scale charge a license fee for use? It does seem like a lot of validated questionnaires do.

So I suppose the answer is we're all in one big group based on symptoms until those biological measures are found?

How do we tease out whether it's just one group or multiple groups?

I have been wondering for some time if we put too much emphasis on exertion in whatever is happening in this thing we call "post-exertional malaise." The big problem is that it usually requires us to look back and name the "exertion" that caused the crash---a dubious prospect ripe for...

Just to be a pedant, but "ME/CFS" is merely an abbreviation, not an acronym as it does not form a word. See "acronym."

Agreed. Though I could imagine all they would need to do is add a sentence or two stating something about in extreme situations extraordinary measures such as PEG tube feeding or total parenteral nutrition may be necessary to avoid starvation?

Er...do they really think any busy HCP is going to read multiple pages on how to accommodate pwME/CFS? While it's not specific to hospital care, CDC actually has a half-decent ONE PAGE review of severe ME/CFS (though I see they've rather unfortunately added pictures; the earlier version was...

There was definitely a gap but it's difficult to remember how long it was. I started having frequent flu-like illnesses within a month or two of my first period and developed IBS about that time or a bit later. Of course, that was over 40 years ago so I might have had an unremarkable, mild...

I'd be curious about the history of the Beighton Scale. How was it decided that the hypermobility of the joints in the scale were indicative of something meaningful?

Merged I noticed this interview hasn't been posted and felt it adds to our ongoing discussions about issues around feeding for those severely affected. Note there are some parts in this interview where they talk about Merryn's gastro tube insertion that are especially distressing to hear (and I...

Nuff said.

When I talk with providers, I use the term stamina for sensory stimuli. If I need to explain further, I point out that dodgy governments all over the world (including my own) use sensory overload/deprivation as forms of torture. At Guantanamo, it was common to use loud heavy metal music and...

We have a bakery here in Portland that uses a millet starter and it's not half bad. It actually tastes like bread rather than a dish sponge, though the crumb has an ever so slight gumminess to it that wheat bread does not. I'm also curious what role hormones might play. I developed IBS not...

I'm surprised nobody has pointed out the absolutely galling patient-blaming: (Emphasis mine)

It's only an N=1, but I've been on rivaroxaban for 8 years and warfarin for 10 years previous to that and my ME/CFS has actually gotten worse while I've been on anti-coagulants. The one I'm more agnostic about is enoxaprin (Lovenox) as I did experience a significant improvement during the 10...

I was always too ill to participate in this thread whenever it was active but I have had a number of thoughts and questions that I would still like to see discussed. So forgive me for re-opening a long dormant threat with a very long post. 1.) I first heard about what was then called EDS Type 3...

Since entering perimenopause, I've been having this very thing. A week after one of only two periods in 2022, that icky flu-like feeling began to lift around 9pm on a Friday night in April. It's not unusual for me to experience fluctuations in malaise, but in this case I was repotting plants out...

I know, right? I read Matthew Walker's Why We Sleep a few years ago but like most neuropsychs he so overeggs our knowledge about what we actually do know about sleep (and some would say he's just flat out wrong about a lot of what's in there). My understanding is that the hypothalamus is...

I use either Gron chocolates or Tasty's gummies. I wasn't sure if it was ok to link to their websites from here given that S4ME is a UK site and cannabis is still illegal there.