NIH ME/CFS Home HRV Study is Open!

[Cort]

It's HRV week! (I posted like 4 things on the Forums this week.) Which is good since I think HRV findings in ME/CFS are fascinating.

[fright]

[/fright]For one thing, in a disease with lots of inconsistent findings, HRV readings are absolutely consistent in ME/CFS research, and have been tied to increased pain, poor sleep and even reduced cognition in ME/CFS/FM. That's perhaps no surprise given that the system they are measuring - the autonomic nervous system - effects every organ in the body.

Finally, (finally!) an ME/CFS heart rate variability study is underway. The study will determine if low HRV readings are related to over-doing it, if HRV can be used to reduce crashes and improve your health, and it will give researchers a better understanding of the role the all important autonomic nervous system plays in ME/CFS.

The study is for U.S. residents; it lasts six months, is done entirely from your home, and simply requires that you wear small heart rate and daytime activity monitors, complete a weekly online web diary and some questionnaires. (If you complete the study you get $300 )

IACFS/ME President Fred Friedberg is leading the study. Please help further ME/CFS research. (I'm enrolling in it)..

Contact Dr. Patricia Bruckenthal at 631- 444-1172 or email her at patricia.bruckenthal@stonybrook.edu if you'd like to participate.

 

[GG]

Hmm, why do that study when you can do this one (the same study) and get double the money?!

Is this what we can expect from NIH, to be paid much less for our efforts?

GG

 

[Cort]

Hmm, why do that study when you can do this one (the same study) and get double the money?!

Is this what we can expect from NIH, to be paid much less for our efforts?

GG

That's interesting! My flyer says $300.....

 

[GG]

That's interesting! My flyer says $300.....

So I would say people who call about this study confirm that it pays $625, and not the measly $300 for the study. Yeah, you don't have to leave your house, but this study is over 6 months of continuous monitoring of your symptoms and reporting them online back to the study group.

GG

 

[Cort]

So I would say people who call about this study confirm that it pays $625, and not the measly $300 for the study. Yeah, you don't have to leave your house, but this study is over 6 months of continuous monitoring of your symptoms and reporting them online back to the study group.

GG

I'm trying to get an answer. Until I heard about the $625 I was actually happy with the $300 (lol)

 

[Not dead yet!]

I'm trying to get an answer. Until I heard about the $625 I was actually happy with the $300 (lol)

Yeah it's kind of interesting because this illness messes up our ability to get or hold on to a job, so it's a significant amount. I wrote to her, but I'm not sure if I'm a good candidate since my sleep cycle is partly random and when I can sleep during the night it's only for 4 or 6 hours. Last night I slept for 2 hours and I'll probably "sleep" during the day today until around 5 PM. I'm almost never awake for 16 hours at a stretch, and asleep for 8. Since they want daytime activity data, idk if I'm a good one for this. We'll see.

 

[GG]

I'm trying to get an answer. Until I heard about the $625 I was actually happy with the $300 (lol)

I have the (all?) documentation that they sent for this study scanned into my computer, so let me know if you want something!

I finished the study back in Sept, perhaps they knocked down the money you get because they are trying to make it a larger study?

GG

 

[weyland]

Yeah it's kind of interesting because this illness messes up our ability to get or hold on to a job, so it's a significant amount. I wrote to her, but I'm not sure if I'm a good candidate since my sleep cycle is partly random and when I can sleep during the night it's only for 4 or 6 hours. Last night I slept for 2 hours and I'll probably "sleep" during the day today until around 5 PM. I'm almost never awake for 16 hours at a stretch, and asleep for 8. Since they want daytime activity data, idk if I'm a good one for this. We'll see.

Let us know what they say. I'm in a similar situation.

 

[CJB]

I'm trying to sign up as well. The e-mail I got says the $300 is paid in increments -- I think you had to complete the 6 months in the first round to get any payment.

 

[GG]

I'm trying to sign up as well. The e-mail I got says the $300 is paid in increments -- I think you had to complete the 6 months in the first round to get any payment.

My payments came in 3 installments, I believe it added up to $625. I have not added up the numbers, but think it lands right around 600

It definitely added up to more than $300!

GG

 

[Horizon]

NIH? This is the Stony Brook study, did they partner up?

I have emails about this study from nearly a year ago so it is interesting that is now "new" and $300 less compensation.

 

[Paw]

Well, it's not like the NIH is swimming in cash, so I see no reason to knock their efforts. We love to criticize government for lack of effectiveness, and then wonder why it's even less effective after we slash its funds. It's the GOP's favorite gift to society: kneecapping.

I probably won't do the study, as I don't like being locked into protocols that I can't fiddle with according to my daily needs.

But I've been pretty amazed by the HRV tracking process since Cort alerted me to it. Not sure yet how I'll put it to use, but the correlation between the numbers and my physical state at any time has been remarkable. For starters, it helps eliminate the second-guessing I sometimes put myself through, wondering if I'm succumbing to catastrophizing or whatever. Do I really feel as shitty as I feel? Well, when my HRV is the same as a 90-year-old's I don't feel much guilt for just wanting to lie down.

 

[GG]

Well, it's not like the NIH is swimming in cash, so I see no reason to knock their efforts. We love to criticize government for lack of effectiveness, and then wonder why it's even less effective after we slash its funds. It's the GOP's favorite gift to society: kneecapping.

I probably won't do the study, as I don't like being locked into protocols that I can't fiddle with according to my daily needs.

But I've been pretty amazed by the HRV tracking process since Cort alerted me to it. Not sure yet how I'll put it to use, but the correlation between the numbers and my physical state at any time has been remarkable. For starters, it helps eliminate the second-guessing I sometimes put myself through, wondering if I'm succumbing to catastrophizing or whatever. Do I really feel as shitty as I feel? Well, when my HRV is the same as a 90-year-old's I don't feel much guilt for just wanting to lie down.

Really? They have tons of money! I haven't voted Democrat in at least a decade!

How effective will the study be if people never enroll or drop out due to not a significant enough compensation for the work!?

GG