USA: News from the Bateman Horne Center

From my perspective as a person with severe OI, this kind of "pacing" is absolutely essential and actually helps.

Lying down to avoid fainting (and falling, vomiting etc), and using compression garments to allow yourself a sliver more upright time in order to (for example) be able to use the toilet or get a glass of water from the kitchen safely is the very opposite of "unnecessary rigmaroles".

I've been hanging out in POTS/OI groups online for years, and there are extremely few things that actually seem to help (medication aside, but few have access to medication). The things mentioned in this handout are among the things that actually do help, and are easy and accessible to most.

I desperately wish someone had handed me this kind of info when I first fell ill. It would have been absolutely life-changing for me, and it would have spared me so much unnecessary suffering, including repeated concussions and other physical injuries from fainting/falling over.

Evidence-based or not, in the real world this helps a lot of pwPOTS/OI, especially those of us who don't have access to medication or other kinds of care and support. It's potentially lifesaving advice, actually.

 

And yet it is largely correct and very helpful to many. Funny how things work sometimes. Some evidence-based things are complete and total harmful BS. Some unevidenced things are largely correct.

Only in medicine. Applying the same logic anywhere else will definitely not work.

 

It is not necessarily a bad thing to share advice based on either clinical or lived experience but it is important to make clear that it is based on this and not on research or any accurate understanding of any underlying physiology.

Then people can decide for themselves how much reliance to place on it. As people with ME we should insist this is clearly stated as we have been subjected an awful lot of bad and indeed harmful advice supposedly based on clinical or lived experience.