In the UK PPPD is considered to be a diagnosis that some patients dread and some doctors consider it to be a 'wastebasket' diagnosis or one which patients should reject. Patients didn't like, understand or use the terminology and wanted the nomenclature simplified because it was thought that this could, potentially, improve outcomes. I'd like to know why that didn't happen in a timely fashion and also why all the cautionary tweets sent from professionals (which I have sent to Tim Hain) were ignored. There were and are many issues with the citations used in the criteria paper (Jon Stone was kind enough to say that 'they could have used a better one' regarding the one from the 1830s but that begs the question 'why didn't they, then?') and Staab's fake case studies didn't help either. There are a host of other issues such as people being diagnosed with PPPD on the basis of a second episode alone, sometimes before they'd even walked through the door. Some people with MdDS had their accurate diagnoses changed to pppd via reissued clinical letters when no further consultation, history taking or testing had taken place so some data about MdDS got lost. As far as I can tell the FND Society made no effort to capture the many misdiagnoses (Prof Staab said my comments about it were 'detailed and helpful' but nothing seemed to change) reported by people labelled with PPPD initially and they found it hard to get PPPD redacted from their notes once they were re diagnosed. The over promotion of PPPD may have resulted in diagnostic inflation and some doctors and patients were also concerned by diagnostic overshadowing and the stigma associated with having a 'functional' label As such I am calling for a 'controversies re pppd' paper so that this all gets a good airing (Prof Hamid from the AVMIB knows most of my concerns about it and those of other patients and professionals). I would like to see this closely followed by a 'care gaps and recommendations' paper, like the one done for people with vestibular migraine, fairly recently. I also found this update about vestibular migraine very interesting DOI: 10.1097/WCO.0000000000001257 and thought the author's comments about FND were both timely and apt.
I've been totally left without a plan. 'Ask your GP for CBT', that's it! I got a text from my GP for Talking Therapies. The state of the NHS, it's hopeless... :(
Thank you so much for this and all you do for people with FND. I am a founder member of the French patient association ADeV, affiliated with the Veda. I am British but live here in France and work as a mind body therapist. We are currently working on a clinical trial to integrate this approach into the multidisciplinary treatment plan for PPPD. I have PPPD myself and have a UA-cam channel in French to help and inform other patients. youtube.com/@pppd-vertiges?si=DoQJz9j9LK7vXszj 🙏🙏🙏🙏🙏🙏
I also have it its almost a year im 21 and im on ssri for 10 months now, do you think it can fully go away one day sometimes its better sometimes its worse but to be real its better than before i think. the problem is some say this and some say that and a lot of people say it can fully go away one day. What do you think honestly
Great presentation. Thank you.
In the UK PPPD is considered to be a diagnosis that some patients dread and some doctors consider it to be a 'wastebasket' diagnosis or one which patients should reject. Patients didn't like, understand or use the terminology and wanted the nomenclature simplified because it was thought that this could, potentially, improve outcomes. I'd like to know why that didn't happen in a timely fashion and also why all the cautionary tweets sent from professionals (which I have sent to Tim Hain) were ignored. There were and are many issues with the citations used in the criteria paper (Jon Stone was kind enough to say that 'they could have used a better one' regarding the one from the 1830s but that begs the question 'why didn't they, then?') and Staab's fake case studies didn't help either. There are a host of other issues such as people being diagnosed with PPPD on the basis of a second episode alone, sometimes before they'd even walked through the door. Some people with MdDS had their accurate diagnoses changed to pppd via reissued clinical letters when no further consultation, history taking or testing had taken place so some data about MdDS got lost. As far as I can tell the FND Society made no effort to capture the many misdiagnoses (Prof Staab said my comments about it were 'detailed and helpful' but nothing seemed to change) reported by people labelled with PPPD initially and they found it hard to get PPPD redacted from their notes once they were re diagnosed. The over promotion of PPPD may have resulted in diagnostic inflation and some doctors and patients were also concerned by diagnostic overshadowing and the stigma associated with having a 'functional' label
As such I am calling for a 'controversies re pppd' paper so that this all gets a good airing (Prof Hamid from the AVMIB knows most of my concerns about it and those of other patients and professionals). I would like to see this closely followed by a 'care gaps and recommendations' paper, like the one done for people with vestibular migraine, fairly recently. I also found this update about vestibular migraine very interesting DOI: 10.1097/WCO.0000000000001257 and thought the author's comments about FND were both timely and apt.
I've been totally left without a plan. 'Ask your GP for CBT', that's it! I got a text from my GP for Talking Therapies. The state of the NHS, it's hopeless... :(
Interesting but does not explain causes and latest treatment for a patient.
Can you fully recover one day and not have it anymore or you must manage it your whole life and live that way 🤮🤮🤮
Thank you so much for this and all you do for people with FND.
I am a founder member of the French patient association ADeV, affiliated with the Veda. I am British but live here in France and work as a mind body therapist. We are currently working on a clinical trial to integrate this approach into the multidisciplinary treatment plan for PPPD.
I have PPPD myself and have a UA-cam channel in French to help and inform other patients.
youtube.com/@pppd-vertiges?si=DoQJz9j9LK7vXszj
🙏🙏🙏🙏🙏🙏
I also have it its almost a year im 21 and im on ssri for 10 months now, do you think it can fully go away one day sometimes its better sometimes its worse but to be real its better than before i think. the problem is some say this and some say that and a lot of people say it can fully go away one day. What do you think honestly