Sarah Tee Posted October 31, 2023 Report Share Posted October 31, 2023 I’m not sure whether I’m allowed to post a link here, but you can find it by searching Facebook. I have calculated that Dr Novak has diagnosed about 140 people with OCHOS. That’s about 100 from his original study, plus he stated in a lecture that his team diagnoses about six more each year. Not sure about HYCH numbers, but he notes 16 subjects in this study: https://pubmed.ncbi.nlm.nih.gov/30256820/ The recipients of the transcranial Doppler equipment grants in the US and Canada should be adding to these numbers. At the moment, OCHOS and HYCH would qualify as rare diseases, but I bet there are thousands of us out there, just waiting for some lovely transcranial Doppler sonography and capnography testing. I also saw in a conference lecture that Dr Novak is about to publish a research study on cerebral hypoperfusion in EDS. So it’s all happening! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 6, 2023 Author Report Share Posted December 6, 2023 Oh dear, something odd happened and the Facebook group might have disappeared. Might be a browser problem. I need to check on a different computer. Will update shortly. *** In the meantime, I just rediscovered this article, in which South Korean researchers also discover OCHOS, but call it OINH. It's from 2016, same year as Dr Novak's article. They found 183 patients who had normal vital signs during tilt table testing except for their cerebral blood flow velocity dropping. https://pubmed.ncbi.nlm.nih.gov/26427910/ That means there are about 300 patients confirmed diagnosed with this condition. Dr Novak said in a lecture that he gets about six new OCHOS diagnoses per year since 2016. Presume the South Korean folks have also added a few. Plus there's me in Australia! That makes it a rare disease according to most countries' definition, but I bet there are many more of us out there. Dr Novak identified sixteen people with HYCH in his study in 2018. He did not say how many more he gets per year in the lecture, unfortunately. I wonder if there are studies identifying HYCH by other names out there? Let me know if you spot one. This one from 2007 finds orthostatic hypocapnia in a group of CFS patients: https://pubmed.ncbi.nlm.nih.gov/17263876/ Do they actually have HYCH, not CFS? Or would a diagnosis of CFS (with PEM) exclude a diagnosis of HYCH? Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 8, 2023 Report Share Posted December 8, 2023 On 12/6/2023 at 11:45 AM, Sarah Tee said: Oh dear, something odd happened and the Facebook group might have disappeared. Might be a browser problem. I need to check on a different computer. Will update shortly. you can post the link to this. is your dad able to pull the page up? Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 8, 2023 Author Report Share Posted December 8, 2023 Unfortunately, the group seems to have disappeared. My dad’s Facebook account disappeared altogether for a day or so, then dribbled back, but some parts are mysteriously missing. I will re-do the group next week of it doesn’t reappear. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 18, 2023 Author Report Share Posted December 18, 2023 Okay, the group is back. Hope it stays this time. Nothing much there yet but hope to get some OCHOS and HYCH folk joining! Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 18, 2023 Report Share Posted December 18, 2023 looking forward to joining the facebook page. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.