Rescheduled web presentation starting now

Sasha

Fine, thank you
Messages
17,863
Likes
34,206
Location
UK
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.
 

Navid

Senior Member
Messages
557
Likes
528
good presentation...nice to see real medical/scientific study and facts about our illness. thanks CAA and Dr. Medow.
 

Esther12

Senior Member
Messages
13,774
Likes
28,350
I only suspected I had it because I find standing still more tiring than walking.
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.
 

Lynn

Senior Member
Messages
366
Likes
250
For years my husband has called me Queen of the Ottoman Empire because I have an ottoman in every room!
 

jspotila

Senior Member
Messages
1,099
Likes
778
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.
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.
 
Messages
1,575
Likes
168
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!