Did they write back? We should let them know a pilot study on DPDR is warranted. Just some twenty patients would go a long way.
ALKS 5461
Tomorrow the FDA will decide on whether or not to approve ALKS 5461. It is not likely that it does get approved however if it does this is huge for DP sufferers. Considering Yuri Nullers highly successful Naloxone study, it is likely that KOR antagonism could be the answer to MANY of our problems. Everybody keep your fingers crossed. God bless.
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If there were a study on DPDR showing a 20-30 % reduction in symptom severity following ALKS 5461 treatment, then that would be valuable, if not as a treatment then as a clue to which mechanisms are at play.Why is this thread even a debate? There have been several with heroin addiction and depersonalisation disorder who has been on suboxone/buprenophine with a very low respons as 20 -30% reduction in symptoms.
It would also be valuable to repeat the Russian study on Naloxone, seeing how many would benefit and to what extent. If it'd have no effect on all, that would also be a clue. At the time of writing the British Medical Journal writes the following about treatment of DPDR
"A study of lamotrigine as an adjunct therapy reported dose related benefits, as did studies using opiate antagonists"
https://www.bmj.com/content/356/bmj.j745.full
And this was as an adjunct to an antidepressive, I suppose. Which doesn't say much about lamotrigine monotherapy.The study with lamotrigine only mentions a reduction of 30% in 56% of those who tried.
I take it it's this study you're referring to. "20 sessions of rTMS treatment to right VLPFC significantly reduced scores on the CDS by on average 44%" It does look promising. Even though it's based on only seven patients.To inhibit the right VLPFC with rTMS will stop all inhibitions of emotions by the all areas of prefrontal cortex, including those areas that works though the opioid system. To inhibit the right VLPFC reduces depersonalisation with 45% on average -especially emotional numbing -but not dissociation.
For heaven's sake!Since 2016 there has been no funding for research at the depersonalisation research unit. Staff is highly reduced.
Here we have a forum of 20.000 members. On Reddit there are 17.000 people following the subreddit for DPDR. According to population-based surveys the prevalence of DPDR is about 1-2 %. There ought to be clamor for research spending. But rather they've reduced the staff and cut the funding at the only research unit for DPDR. Hurray.
I've always thought the ME/CFS community have been utterly unsuccessful at getting enough attention and thereby funding for studies, but I guess with regards to DPDR it's another story entirely.
Basic research is good. I like basic research. But at the same time, I've seen time and time again that what's true in a model hasn't been successfully translated into effective treatment. It's very (!) good though that case studies and small studies support their findings.
Anyways. So here we have professional medical doctors, with a will to help a huge patient group, but who's had their spending cut. And we have private rTMS clinics, opting to give ineffective treatment, making money in the process.
If the people behind the private rTMS clinics aren't totally unscrupulous, then it would benefit all of us if they were matched with the researchers, getting them on the right path to offer better treatment for us all.
So, I've done some research and see that the costs of neuronavigation systems, including software, equipment and operative instruments ranges anywhere from $250,000 to just under $1 million.
For the sake of the example, let's say they charged regular prices, plus a premium of $2,500 for every treatment with neuronavigated rTMS. Then they'd need 100 patients to recover the costs if they went for the cheapest equipment, and 400 patients if they went for the most expensive.
We, as a people, have sent men to the Moon; we should be able to convince a clinic that this is the path to go. If everything fails, and fails miserably, they'd still have the machine to sell second hand. Or conversely, they could buy second hand equipment in the first place, cutting the costs and risks further.
Source for the claim for the costs for neuronavigation equipment.
For the sake of the example, let's say they charged regular prices, plus a premium of $2,500 for every treatment with neuronavigated rTMS. Then they'd need 100 patients to recover the costs if they went for the cheapest equipment, and 400 patients if they went for the most expensive.
We, as a people, have sent men to the Moon; we should be able to convince a clinic that this is the path to go. If everything fails, and fails miserably, they'd still have the machine to sell second hand. Or conversely, they could buy second hand equipment in the first place, cutting the costs and risks further.
Source for the claim for the costs for neuronavigation equipment.
Alrighty then. That's good news. So even at the high-end it's affordable.The cost of neuronavigation for rTMS is; . "We note that the cost of our set-up is much lower than many commercial systems in the market (<$5000 vs $50,000). Our results also showed that the tracking performance of the system was on a par with other high-end commercial systems"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5738908/
From your writings I knew the stuff about OCD and depression where you don't need neuronavigation for rTMS and so forth. The gist of my message was that it's achievable for someone to make an investment pay off. If someone got neuronavigated rTMS for DPDR in Europe, they'd be close to having a monopoly, and if they'd charge a premium, I wouldn't mind.Localisation with the use of neuronavigation will also increase the cost for the patient with 500-700 euros- that is a cost 95% of patients can avoid because they don't need for location. rTMS is also relatively new on the private european market. From around 2017
You need neuronavigation for disorders that are very atypical for the normal rTMS clinic right now and are regarded as "off-label" because of the small trails done.
Doctor Kelley, with her private practice in Arizona, is able to offer her patients effective rTMS, according to the thread you linked to. If it's feasible for her ... I see Smart TMS has clinics in London, Birmingham, Manchester, Bristol and Havant. And they're soon opening a new clinic in Holborn. So it looks like their business is going well, well indeed. They write that «Studies show that DPD could affect one person in every 50 in the UK», so they know there are patients out there. They should have one clinic which specializes in DPDR, one of their five clinics in England. If each clinic has a high level of autonomy, one could get in touch with each of the five in sequence, explaining the high potential for neuronavigated rTMS, the feasibility of it, and that patients from Europe would flock there if everything went dandy.
What we need is at least one clinic willing to invest, and at least one researcher willing to give guidance, or become some sort of commercial partner.
700 euros for extra time spent is cheap. They don't have to spend extra time on all conditions, it's just to not use the neuronavigation machine when they've got a patient with say OCD or depression. That's no problem.Localisation with the use of neuronavigation will also increase the cost for the patient with 500-700 euros- that is a cost 95% of patients can avoid because they don't need for location.
Yes. Yes, I would!Will you open our brains too with a russian doctor
The number I dug up was slapdash, quick and dirty. I googled and pasted in a flash. But yeah, I would trust a Russian research institution to do neuronavigated rTMS-if the people there seemed skilled, trustworthy and wanting to learn more about DPDR. But Nigerian? Nope!
'Yes, yes I would' was an ironic answer to your snarky comment. You drew a picture of some doc Nick Riviera crossed with Bernie Madoff. It gave me a laugh, but it isn't necessarily what you'd find at a foreign research clinic, nor is Russia at the top of the priority list. The Russian clinic was chosen at random from a long PubMed list of researchers with access to neuronavigation and rTMS, because you wrote it was all but impossible to get treatment, even if you had a million bucks at your disposal.Have a nice trip to Russia.
What it takes is the will of an existing clinic to invest some fifty grand, plus the assistance of researchers. It's not a chimera. It's not impossible. My approach is to get everything on the table, and then adjust or dismiss options afterwards, instead of dismissing everything first. Sure, sure. I've seen private clinics where the docs wear Rolexes and offer experimental, ineffective and overpriced treatment.
I think the mentioned DPDR foundation could play a key role in working with the British rTMS clinics, lobbying for neuronavigation and cooperation with experienced researchers. Impossible is nothing.
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