virology.ws/.../trial-by-er...
David has been dubbed a 'FND troll' in the past but I can assure you he has a lot of empathy and understanding for people with a current FND dx (remember, it can be given as a 'place holder' dx) and, much as he does for people with M.E. and Long Covid, he is very good at speaking truth to power regarding how clinical trial results are reported. If you can donate to his crowdfunding, that would be great but, if not, sharing it helps 
Thanks for posting the review of the physio4fmd trial ..disappointing results indeed. I thought the related comments were a little harsh as regards future help/research for patients with fmd and that the view of what is happening on the ground somewhat misrepresented . As a person with FMD. I don't think there is any need to fear that NHS funds are being wildly spent on 'physio4fmd'. Not all neurology depts (such as mine) even have a dedicated therapy team for FND behind them, and once referred on to an MH hospital, you will find few, have an FMD trained physio to offer services. My experience of neuro physio was 2 sessions only, neither of which involved any 'on the spot' exercises , home exercise advice or advice on how to reduce the shaking. ..and yet we know from the Jamie Lacelle story that physio can give back near normal life to flailing limbs.. so what is going wrong??
Hi, I was on that trial as I was sent to neuro-physio by my neurologist and it was my therapist who suggested I may have FND. I was put on the trial and got neuro-physio rather than physiotherapy. I found it good in the fact it got me walking again and was 1to1 but Covid hit before it ended so could not finish, my therapist then moved and never heard anything so left in the dark really. It was good while it lasted, but didn’t get to the last part which was about the brain and memory ( which I suffer with). Maybe it was the Covid that had a factor? I also know from on here it’s a post code lottery who you get therapy wise, I find physio now is to hands off but hydro therapy was good but short (1to1) and neuro-physio was good had three weeks and then on trial was due to be 12 sessions but only got to do 8 . I was at kings London and they have a big neurological department. Kevin
Hi kev60 If you have enough spoons I'd deffo try to feedback your experience of the trial to David Tuller, if you can, especially regarding Covid (you can do this anonymously by commenting under what he wrote, rather than on Facebook). As I mentioned to Shimmyaway, Glenn Neilson also needs to know about your lived experience of the trial (eg missing the last part, only getting 8 out of the 12 sessions that were planned originally and feeling left in the dark) and what's happened for you subsequently.
Hydro therapy is great for people with many conditions (my friend with MS and my friend with MND both improve dramatically both during and after hydrotherapy) so a trial for that (across multiple conditions) could be great and I doubt it would be too hard to do a feasibility study.
Shimmyaway you're welcome; the points you make are highly valid and David loves feedback (which you can leave anonymously via the comments under the blog, so if you have enough spoons and want to share your experiences via his fora, then I think that would be a great help, going forwards. Glenn Neilson is one of the good guys and I think he'd be happy to receive feedback too since he knows he can learn a lot from patients which will help to improve services in the future.
Thanks for advice 21.., will feedback to D. It is not really clear to what extent the physio4fmd programme or even the principles are being shared and used at ground level with patients. I expect funding is an issue. ..and will not improve in the light of the poor results. I do hope the idea of physio will not be abandoned but possibly used more selectively?
You're very welcome and I think Dr Neilsen needs to know about this too. As far as I can tell, early access to neurophysio is helpful for people with a lot of conditions including FND but finding well trained and experienced physios isn't easy and there's a lot of demand from people who have had strokes so it's a competitive industry and, understandably, experienced physios may decide to work with patients they think have the best chance of regaining some function and in the UK many work privately so that they can get round the 'six sessions and that's all' limits. I don't know if those are still in place but that's when the drift from NHS provision to private provision started.
Someone with FND made it into the BBC news today so hopefully that will help although I very much doubt that the reporter knew that FND is in DSM or that the recent iteration of DSM was detrimental to patients and researchers. I thought the woman concerned displayed remarkably good mental health, given her ordeals so it does bother me that FND is still in DSM.
FND is a symptom not a cause
There is only just one brain
FND and Endocrine problems Link?
How can I help my husband 
