Uh, Pots Patients Respond To Placebos?? Article!

[sue1234]

Am I reading this correctly? Is this article implying that a group of POTS patients respond to placebos, so they need to include that more often in testing so they can "rule out" POTS better??

I'm sorry, but some of this research in POTS is just demeaning to us patients that have a serious illness and don't know why. (I am ecstatic about the autoantibody paper that came out recently!).

http://www.ncbi.nlm.nih.gov/pubmed/24606242

[dkd]

Link?

[sue1234]

I just added! Sorry, forgot.

[JuneFlower]

Placebos are shown to help all people with any illness (even Cancer), IMO, so I wouldn't pay any attention to this.

June

[lulusoccer]

Actually, that study was published by some well respected doctors researching POTs. If doctors weren't using placebos in their clinical trials then actually they would be doing us a disservice because those are needed in almost all clinical trials. From reading just the abstract they clearly state that they believe it is due to a cardiovascular physiologic variation rather than a "psychological benefit from perceived therapy". And at the end it just says "These data highlight the need for a placebo arm in hemodynamic clinical trials in POTS, and may have important implications for diagnosis of these patients." which is very true. This study is in no way demeaning to POTs patients and is just a way for the medical community to help tailor future research studies and make sure to include a placebo group.

P.S.. also some of the same doctors that did the research on the antibodies are also the same doctors who wrote this article. They very much respect POTs patients and are trying to help us, not hurt us!

[sue1234]

I recognized the authors and did know they are from Vanderbilt, and am aware that they are part of the autoantibody study. I guess my point is, the way I read it, they would diagnose less POTS if they made sure to add in the placebo aspect, because then they could "weed out" patients by what is seen as a "perceived" benefit.

***I have edited this, as I have reread and reread again the abstract. I am not sure how to interpret this paper, and I will admit that.

[Jan]

What I got from the paper is that what ever medication they used didn't really help. That symptoms are worse in the AM, with or without medication and that is very true. This probably means some people who feel better later in the day think their meds are helping when the real reason they feel better is that everyone feels better in the afternoon.

No medication trial is valid without a placebo as part of it, you can't show cause and effect without it.

[Libby]

No, this paper is actually good for us.

The paper is saying that in a previous study(s), researchers found that POTS patients' heart rates decrease over the day when only given a placebo. The author of this paper suspected that the decrease in hr wasn't a psychological response to the placebo (implying that the other papers did think that...grrr), but rather an actual cardiovascular response in POTS patients - i.e. heart rate decreases in all POTS patients over the course of the day, regardless of whether they thought they were taking meds or not, because of something to do with POTS, not because of wishful thinking.

So these researchers took POTS patients and gave them all a placebo in the morning. They told half of the patients (group A) "We are giving you a placebo. This will not lower your heart rate at all." and the other half (group B ) "We are giving you an active drug. This will lower your heart rate." If the lowering in heart rate were psychological, they would have seen a lower heart rate only in group B - the group who thought they were getting a drug. However, they saw the same response in both groups. That means that, regardless of whether you think you're on medicine to lower your HR or not, throughout the course of the day your heart rate WILL decrease. Whatever happens is not happening because of the placebo effect.

They mention how important the placebo arm is in studies only because this indicates that POTS patients' HRs lower over the course of a day, without medical intervention. So if a researcher gives a HR lowering drug at 9am and checks the patient 4 hours later, any decrease in the HR cannot be attributed solely to the med - because the patient's HR would have dropped even if s/he hadn't taken the med that morning. There needs to be patients in a placebo arm to show how much the HR would drop without the med in that same time period, to see if the med had a statistically significant effect.

Also, it suggests that the time of day that you have your TTT would make a difference in your standing HR readings, which could affect your diagnosis.

[sue1234]

Thanks everyone for their input and interpretation.

[HopeSprings]

I like any study that disproves the placebo effect in us. Aka yes our problems really are physiological, not psychological. I wonder if "mornings" are the issue though or if it's being supine and/or sleeping for that many hours. Would the same thing happen if we slept all day and they took our measurements at night or is it really a morning thing? I feel horrible after a nap - low BP, tachy, dizzy.