Postural Biomarkers as Outcome Measures for ME/CFS

[@sweetiepienumber1]

This is awesome. I understand patients (social media commenters) who are frustrated with millions of us in very difficult situations. I hope that they come to understand the years and effort Dr.Bateman, researcher Suzanne Vernon, and others have put into helping us all. I would love to be a patient there one day when my ship comes in. May this community hang in there until some helpful treatment comes from researchers. Researchers who don't get large funding and have given patients hope by sharing what they know.. I walk for two hours on occasion when shopping and pay for it later. I can do it with a couple of days of recovery, especially if I'm not already worn out. I am eternally grateful for the work, support, and the hope that you folks provide. Continued success!

[@jodiosborne5056]

Thank you for your tireless research! It gives me great hope for the future. I’ve been sick for so long now and I am severe. I have watched my life go by but I still have hope. So thank you. 🙏

[@danashannon8234]

Do you follow Ron Davis & other researchers from Stanford OMF (open medicine foundation) ?

[@jodiosborne5056]

Oh yes, definitely!! They’re literally two of my favorite people in the world. I’ve just missed so much of my children’s lives and it’s disgusting bc even at places like the “mighty” Mayo center, I was told that there’s no such thing as ME and prescribed exercise. I can’t even sit upright and they prescribed exercise 😩

[@sunshinenOJ]

Great news, but a better title might be: new devices to measure postural symptoms in clinical research.

[@brobinson8614]

Yes as confusing if people don’t watch the video until the very end

[@SuellaPostles]

I'd love to read a transcript of this please. It would help people with hearing difficulties. I learn best by reading.

[@danashannon8234]

We already know this. The funding money could be used in better ways. : (

[@KittenCasserole]

Great info, thanks for sharing

[@solar979]

The problem with severely ill patients is that they are unable to visit doctor's office or participate in research. They are bedbound and housebound. How come your severely ill patients are able to be upright for two hours?

[@danashannon8234]

Personally I prefer to follow Ron Davis & his research team at Stanford. They started the Open Medicine Foundation (OMF) & are making remarkable progress at a much faster rate.

[@FionaEm]

@@danashannon8234 Lucinda Bateman and BHC have been involved in ME treatment and research for years. There's room for everyone ☺

[@papercup2517]

@@danashannon8234 There's a high level of collaboration; it's not one vs another. And significant breakthroughs could still come from anywhere, eg from Australia this week: www.preprints.org/manuscript/202002.0029/v1

[@solar979]

@@danashannon8234 The time will tell. I don't think we should put all eggs in one basket. I appreciate the work done at Bateman Horne Center and am thankful for any work done with ME/CFS patients. I just don't think they included severely ill patients in their research.

[@solar979]

@@FionaEm I agree.

[@danashannon8234]

Is the Bateman Center teamed up with OMF by chance?

[@papercup2517]

Yes, they collaborate: www.omf.ngo/scientists-working-on-mecfs-research-with-dr-ronald-w-davis-phd/

[@danitimnev2102]

this is great news, but as an IT specialist, I wonder why the need to build a whole new device for this... I would assume it would be trivial, much cheaper, faster and more accurate to use and existing device like the FitBit or any other personal fitness tracker, and simply adjust it so it can fit on the leg of the patient; simple custom software should be able to solve the rest easily

[@danashannon8234]

I prefer following Ron Davis & his research team at Stanford. It's just simply light years ahead of this. He started the open medicine foundation(OMF) they are actually finding changes and are about finding the cause of changes , possible medications. I applaud all research , however this is just covering what we already know.

[@RickyBuchanan]

They haven't built a new device - the shimmer device they're using is an off-the-shelf research device

[@danashannon8234]

Technically "severely ill patients" are bedbound. This just seems redundant.

[@brobinson8614]

good to see it’s going to be used in studies to measure objective improvement if possible treatments come along. Shame it wasn’t invented before the PACE trial as those lying fraudulent researchers wouldn’t wouldn’t have had a leg to stand on 😂

[@sannajonkhart8758]

This seems like a waste of time'/money and energy and the title is misleading. I thought you had found a way to show how the UP time would aggrevate patients' symptoms. But as I understand it now, you only showed that severe patients spend more time lying down than moderate patients and that moderate ME/CFS patients spend more time lying down than healthy people???? Wow.....

[@woppini9534]

I just dont see the need for this. Sorry, but those efforts and finances should be put to better use. If one is bed bound this simply wont work.