How Many ME/CFS-related Tests have you done? (POLL)

[heapsreal]

"We're going to stick you in an unfamiliar bed in an unfamiliar room and attach various invasive gadgets to measure how well you sleep. Have a nice night! "

Exactly🤣🤣 it didnt help. The dr at the time i said i had severe insomnia and he said oh you have sleep apnea. How if i dont sleep very much. When he got the test results he said oh you have insomnia🤔🤔. Next doctor.

 

[sometexan84]

Exactly🤣🤣 it didnt help. The dr at the time i said i had severe insomnia and he said oh you have sleep apnea. How if i dont sleep very much. When he got the test results he said oh you have insomnia🤔🤔. Next doctor.

I don't understand those test. I did my sleep test in my own house. I used North Texas Sleep Solutions. They gave me the equipment, I took it home, and had everything monitored in my own bed.

Results were Moderate Sleep Apnea. Which was a solid clue for me. But that was like 2019.

 

[sometexan84]

I'll tell you one thing. I started from the top of @Hip's roadmap, and did testing for the obvious stuff towards the top that I'm now convinced every single person in this forum needs to do. And then, anything that seemed less likely on the same roadmap, I researched and looked at symptoms and comorbidity frequencies and determined which tests I should do. All that was easy Step 1

 

[heapsreal]

I'll tell you one thing. I started from the top of @Hip's roadmap, and did testing for the obvious stuff towards the top that I'm now convinced every single person in this forum needs to do. And then, anything that seemed less likely on the same roadmap, I researched and looked at symptoms and comorbidity frequencies and determined which tests I should do. All that was easy Step 1

Yes the Road map @Hip created is a great reference.
Now he has to come up with a bloody cure 🤔😉🍺

 

[Wishful]

I don't understand those test. I did my sleep test in my own house.

I was thinking about that this morning. Surely all they need is an audio recording, taken in your own regular sleeping conditions. An AI should be able to identify all sorts of patterns from that. Sticking on a few sensor patches could add data on heart function, nervous twitching, temperature, bladder signals and even brain activity. Requiring patients to sleep in a different bed&room with invasive equipment seems barbaric. My guess is that laziness (on the part of older doctors) and funding issues are involved.

 

[Hip]

Now he has to come up with a bloody cure 🤔😉🍺

I love it!

Well I carry on volunteering myself as a guinea pig, trying out all sort of substances, licit or illicit, safe or risky, commonplace or obscure, conventional or bizarre, in hope of stumbling across something!

 

[Sushi]

I was thinking about that this morning. Surely all they need is an audio recording, taken in your own regular sleeping conditions. An AI should be able to identify all sorts of patterns from that. Sticking on a few sensor patches could add data on heart function, nervous twitching, temperature, bladder signals and even brain activity. Requiring patients to sleep in a different bed&room with invasive equipment seems barbaric. My guess is that laziness (on the part of older doctors) and funding issues are involved.

I also had a Home test and it did include audio as well as a variety of sensors and gave an impressive array of data. Insurance paid with no problem.

 

[Wishful]

By funding, I meant that those who still do the barbaric style of sleep testing have a financial interest in continuing that. Maybe pay and prestige come from having multiple sleep beds in use, or they're worried that cutting the funding for that will simply mean a lower budget to play with. Well, if so, the insurance companies will probably start refusing to support the older, more expensive testing.

 

[Abrin]

I don't understand those test. I did my sleep test in my own house. I used North Texas Sleep Solutions. They gave me the equipment, I took it home, and had everything monitored in my own bed.

Results were Moderate Sleep Apnea. Which was a solid clue for me. But that was like 2019.

How did you end up putting the electrodes on your head though?

All the times I've had to go for a sleep test it took forever for them to put all the electrodes on my head, not to mention all the other sensors they had taped to me.

 

[sometexan84]

How did you end up putting the electrodes on your head though?

All the times I've had to go for a sleep test it took forever for them to put all the electrodes on my head, not to mention all the other sensors they had taped to me.

The Sleep Solutions place gave me a thing to take home, record sleep, and then return the device. I think it had chest strap w/ monitor, clear tube things in my nose, and then there was a finger monitor as well.

Was comfortable enough, easy to do. And then later they gave me my sleep report back and went through it all w/ me. My test below, shows Moderate Sleep Apnea. Then I had to get a CPAP. But I don't really use it anymore. It didn't help much. I might retake this test some day after I'm back at 100%, and predict that I'll test in the Normal range.

TBH, if anything, I think this test led me astray from what was really happening.