CJB
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Hurry -- it has started. The presenter is talking about blood pooling.
Hurry -- it has started. The presenter is talking about blood pooling.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Rescheduled web presentation starting now
- Thread starter CJB
- Start date
Cort
Phoenix Rising Founder
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I pulled a classic Cort boner: I thought 12pm - just like the last one except I'm on the West coast - so it as actually at nine....so typical.....
Sasha, the presentations are recorded and archived on the Association's website. The slides are usually up within a day or so, and the full presentation follows a day or two later. Check here for updates: http://cfids.org/webinar/series2010.asp
Thanks, Jennie - will it go onto your YouTube channel as well as be on mediaplayer?
BTW, I was recently diagnosed with orthostatic intolerance despite never feeling dizzy or lightheaded when standing. I only suspected I had it because I find standing still more tiring than walking. I started a thread recommending people who get tired but not dizzy standing to check themselves out using an easy test. Several people with the same symptom profile did so and now believe they have OI.
I've seen an estimate (can't remember where, sorry!) that about 2/3 people with ME have OI. I don't know what proportion of those with OI don't experience dizziness/lightheadedness but I am concerned that those who don't won't recognise themselves in the way that OI is almost always billed - in terms of dizziness/lightheadedness on standing. The CAA blurb about this presentation reads: "It has long been established that many people with CFS experience symptoms like light-headedness associated with upright posture, broadly called orthostatic intolerance." Would the CAA consider changing this to something like "Many people with CFS find standing still for even short periods of time extremely tiring and sometimes feel light-headed or dizzy when they do so" or something like that, if Dr Medow was happy with that?
I'd be curious if Dr Medows knows the prevalence of not feeling dizzy on standing in people with OI, particularly in CFS.
Thanks again - I'm really pleased that the CAA has put on a talk on such an interesting and important topic and I'm looking forward to seeing it on YouTube (if it goes there!.
ETA: Getting a diagnosis of OI is extremely important because it's one of the symptoms of CFS that's treatable.
CJB
Senior Member
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Esther12
Senior Member
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I've always had this - from long before I was ill. Standing up was always a real chore, while I would often end up walking about for pleasure. It seems I may well have had a collection of problems before getting ill which meant it was especially likely glandular fever was going to lead on to CFS. Drat.
usedtobeperkytina
Senior Member
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And do you notice how often you want to prop your legs on another chair or ottoman when you are sitting?
Tina
Tina
Dr. Yes
Shame on You
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K
_Kim_
Guest
...especially on a thread that is dealing with the subject of abnormal blood flow to the lower extremities
Are the slides going up? If they're not, I'd plug it to some people now but if they are, I want to wait.
fds66
Senior Member
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Tomk, they did say the whole presentation would be available online - found the recording here http://www.cfids.org/webinar/series2010.asp
Not sure the slides will be separately available?
Not sure the slides will be separately available?
hey Tom and fds66 - Jenny had said that the slides are usually up within 2 days (usually before the broadcast) so I just emailed the CAA to ask when the slides will be posted. Will let you know.
Me - I'm always happy to hear of signs of life - mistimed or not
fds66
Senior Member
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- 231
Thanks islandfinn for emailing them to find out.
There are slides for Medow's presentation, and they will be available on the website. I spoke with staff this morning, and the slides will be going up soon. There was a delay due to the overhaul of the SolveCFS website to coincide with the BioBank announcement.
Very impressive Jenny - that may be the quickest response to anything that I've ever received. Thank you!