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No, because they aren't "recommendations of actual doctors". This is ONE doctor that already admits short-term efficacy of dopamine agonists while simultaneously ignoring the negative short and long-term effects of his own proposal. Why are you even bothering bringing up nicotine, alcohol, etc.? Quitting those are already default considerations in pretty much any condition. You can see augmentation issues with GABA analogs. https://academic.oup.com/sleep/article/48/Supplement_1/A625/8135982?login=false "Occurrence of symptoms earlier in the day with increasing severity suggested augmentation. " "This case highlights a fairly underreported phenomenon of gabapentin-induced augmentation in pediatric RLS." So it looks like lower rates are more the product of a lack of sufficient data. Again, read my initial statement. The only one trying to bring in long-term problems with dopamine is you. Which is worse? Augmentation due to long-term use of dopamine agonists or the 40% increased risk of suicide associated with long-term GABA analog use? Hard to study long-term effects if your patients are offing themselves before you get a chance.
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Again, you are dismissing the experts for your personal theory. Your choice. I will rely on the experts. The rest of your post is ignoring quite a bit of what I said, removing context, etc. Not worth any more effort. Don’t know how you came up with this stuff. Don’t want to know…which surprises me. I always want to know. Everyone observing, if you are seriously interested in RLS, don’t take my comments as doctrine. Just ignore BlipBlap on this subject. (I don’t think I have ever said that before on the board) RLS Foundation is a good first stop with the easiest to remember and type address (I so miss the days of LDS.org) https://www.rls.org also John Hopkins https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/restless-legs-syndrome Mayo or Cleveland Clinic if you want less reading. Sorry for the detail and my too many posts due to my semi obsession with accuracy. I wouldn’t have hopped down this rabbit trail if I knew it would be mud all the way down with a disappointing view at the end.
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So you are ignoring the recommendations of actual doctors and researchers based on real life responses to depend on an out dated oversimplification of the process involved? It gets complicated because dopamine both inhibits and excites. Then there are the negative side effects of long term use of dopamine agonists, especially augmentation, but also other effects, like compulsive behaviour, nausea, vomiting, dizziness and sedation, which has led to preferring Gabepentin and pregabalin as first line even if not as targeted. They don’t work for me, but Horizant and Gralise work well for my daughter. Her doctors, specialists in sleep and pain, have never suggested using the dopamine agonists. She started treatment probably 15 years later than I did, but had the same problem with doctors not listening and insisting on using drugs not recommended for those with the disorder (she went from waking up around 10 am to waking up around 2 pm, which defeated the purpose of the medication to help with her severe social anxiety and get her back into school). I warned the doctor, he stated he didn’t treat RLS and we were so desperate for our daughter to have some semblance of a normal life again (diabetes type 1 sent her anxiety through the roof, wasn’t great for RLS either, but besides sleeping later, it wasn’t a huge issue until after the psychiatrist refused to listen and we were too dismissive of our own knowledge and experience). BTW, the current model of RLS isn’t dopamine deficiency. It’s a complicated interaction of altered dopamine regulation, iron-dependent dopamine biology, circadian effects, and interactions among several neural systems. It’s not a straight forward drug in, increased dopamine, less RLS process. First line treatment after establishing it is RLS and removing any drugs that may be triggering it is more likely to be test iron and address and deficiency, but that’s difficult at times if people can’t tolerate iron supplements and don’t qualify for iron infusions, which are quite expensive. Lifestyle recommendations like exercise, reducing or quitting nicotine, alcohol and caffeine, sleep hygiene, and a couple of other things I can’t remember should be suggested as well. If someone is interested in supplements, magnesium has the best documentation. Then if medication is still needed, first choices are three α2δ calcium-channel ligands: Gabapentin, Pregabalin, and Gabapentin enacarbil. Horizant is the last and Gralise is an extended release that delays it for the small intestine. Horizant gave me ten days of pure relief, then stopped working. No vomiting or compulsive behaviour or augmentation thank goodness. So much better than the agonists. But it works great for my daughter. We react very differently to drugs. You don’t get augmentation with the Gabepentin versions, you do for a high percentage of the agonists according to documentation. I am not an exception. The experts working over years with patients knew this and were recommending against the use 20 years ago before I even started on any drugs. It is foolish to use a drug that is likely to make a disorder worse, not better. https://www.neurologyadvisor.com/features/restless-leg-syndrome-aasm-guidelines-update/ Your risk of augmentation increases the longer you are on it. https://pure.johnshopkins.edu/en/publications/a-10-year-longitudinal-assessment-of-dopamine-agonists-and-methad-4/
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(Local Russian) Church Leader Detained For "Financing Terrorism"
BlipBlap replied to smac97's topic in General Discussions
The law explicitly bans proselytizing outside specific areas. There have been cases where evangelical Protestants have been prosecuted under the law for talking to people about their faiths inside their own homes and Jehovah's Witnesses have been banned from the country entirely. It is most definitely religious in nature and has nothing to do with Putin in terms of whether someone is opposed to him or not. -
The HHS is now so politicized I don’t trust their report at all. It has regularly been spouting nonsense for the last two years about all kinds of quackery. Why should I believe them now?
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(Local Russian) Church Leader Detained For "Financing Terrorism"
The Nehor replied to smac97's topic in General Discussions
I’m not even sure this had a religious motivation. It might help to know if they are going after others even vaguely involved with Putin’s opposition. -
...Insomnia would obviously be a sleep disorder as it indicates that you can't sleep. That's a massively poor attempt at a counter. Would you call paralysis something other than a movement disorder because you aren't moving? What do you think "disorder" means? RLS isn't a "sleep disorder" because the movements involved can occur whether you're awake or asleep. Hence it being a "movement disorder". It wouldn't even be "sleep-related" for the same reason. You could have the problem while being wide awake and sitting in a cramped space for extended periods of time, like on an airplane. Presumably you could also have it in other instances too, like standing in a military-style formation (be it in the actual military or something like marching band) for example. You don't have to meet all diagnostic criteria in order to be accurately diagnosed with something, and seeing as how in your initial post on the subject you stated the following: "I told doctors I was sleeping 16 hours a day, no sleep test offered. I told them 20 years later I was sleeping 30 minutes at a time a couple of times a day." Doesn't sound like a sleep disorder at all. It sounds at best like depression. I don't recall saying that dopamine agonists were first-line, but neither of your links suggest that they shouldn't be. Oddly enough, your first link goes along with what I said: "Although dopamine agonists (DAs) have excellent short-term efficacy for RLS patients and relatively few side effects, Winkelman says, they are also associated with a long-term overall worsening of RLS symptoms," Now, compare that to my statement: "I'd just give you a low-dose dopamine agonist and reevaluate in 6-ish weeks." 6 weeks isn't' "long-term". All your second link is is a rehashing of the first. It cites the same doctor's work. Now given that GABA is an inhibitory neurotransmitter, it does make sense for RLS. Ironically enough though, about a third of the people on GABA analogs experience...psychiatric depression. There's also the other problems, but I'm sure they're nothing too bad. Oh. https://web.archive.org/web/20191222091828/https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-serious-breathing-problems-seizure-and-nerve-pain-medicines-gabapentin-neurontin Well I suppose that your RLS will be fixed if you stop breathing. Seeing as how you're articles touch on what happens if people miss dopamine agonist doses, I wonder what happens if people miss their doses of GABA analogs. Insomnia Confusion Suicidal ideations So yeah, it doesn't look like dopamine agonists being first or second line treatment is "outdated". You're confusing practice with theory, and using GABA analogs is still most definitely theory in this case. I already explained the connection between RLS and depression.
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It’s old (85) But was in clinical psych when first when getting the depression diagnosis, within 5 years for most of them, 8 years the last time. Not that hard to remember diagnostic criteria for depression and share that with the doctors. These are the current ones, would have to check, but assuming they are more thorough now, so will just use these. The 9 Diagnostic Symptoms Depressed mood: Feeling sad, empty, or hopeless most of the day. Me from age 22-42 (or whenever I got put on the dopamine agonist that rewired my brain so to speak): nope, definitely not Loss of interest: Little to no pleasure in all or almost all activities (anhedonia). Me: nope, definitely not. Weight or appetite changes: Big weight loss (not dieting) or weight gain, or big change in appetite. Me: only when put on antidepressant drugs (gained 5 lbs in a couple of weeks with all of them) or pregnant. Sleep changes: Trouble sleeping (insomnia) or sleeping way too much (hypersomnia). Me: massively both, hours to go to sleep, 12-16 hours once asleep if not woken up. Physical movement changes: Feeling overly restless or noticeably slowed down to others. Me: restless at times (duh) Fatigue: Tiredness or loss of energy nearly every day. Me: lots and lots of fatigue Worthlessness: Feeling worthless or having heavy, unneeded guilt. Me: nope, not at all, some frustration though Concentration trouble: Trouble thinking, focusing, or making choices. Me: nope, not at all Suicidal thoughts: Recurrent thoughts of death, thinking about suicide, or a suicide plan. [1, 2] Me: once, due to a drug, very scary, never took the drug again So explain to me why they went to depression instead of sleep issues? Heh, maybe because their training in sleep issues was minimal. Not their fault, just the way it was set up, but why not send me to a specialist instead of arguing with me I was depressed? “How can I be depressed when I am happy, in a good mood, enjoying university, have the best kid in the world and a sweet, noncritical husband, and having fun with my family?” Not saying they were negligent in not discovering my RLS. They were negligent for focusing on depression when I lacked the most obvious mood dysfunctions and only had sleep related issues. They should have focused on sleep. ——- I am well aware of how serotonin, dopamine, and norepinephrine interact with deficiencies or imbalances leading to a large variety of not nice stuff. Well aware dopamine is involved with some forms of RLS. Still undetermined if all as there are quite a few varieties, mine is a combo of genetic, iron-related, medication-associated, pregnancy-associated and possibly trauma as I was in a car accident at thirteen and my head crashed against the dashboard. I studied dopamine deeply when looking for alternatives to the Parkinson drugs that were driving me insane. Iron is tested because it’s indicated for dopamine synthesis. Please explain the connection between depression and RLS as you see it. Always interested in learning. I am assuming it’s more than just dopamine is involved.
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And I would have a very good case for malpractice. Btw, you are out of date. Dopamine agonists are no longer the first line choice for long term treatment. While it was Sinemet that took my disorder in 3 weeks from primarily nighttime moderate, occasionally severe to all day every day severe with the bugs just moving in rather than visiting from time to time, the agonists just kept digging it down deeper and added nausea, vomiting, compulsive eating, migraines and chronic low level depression (emotionally numb, no lows but no highs, life like a treadmill, living in bubble wrap). https://sleepreviewmag.com/sleep-treatments/pharmaceuticals/prescription-drugs/restless-legs-syndrome-dopamine-agonists/ https://www.health.harvard.edu/diseases-and-conditions/a-major-change-for-restless-legs-treatment Tried all three as well as pergolide. Fun times. I would be out looking for another doctor before you finished typing your treatment protocol into my file. Ever heard of augmentation? projectile vomiting? That would be a horrendously obvious case of a doctor refusing to listen to his patient. Had one of those, so I know it’s possible. I went back to the guy who gave me my second sleep study…or was it the third? and had to beg him to take me on. I had been passed to the disaster doc when my neurologist who found my best solution moved out of town and she hated the opioids and just pretended me sleeping only for a few hours during the day on the drug she was comfortable with was reasonable after assuring me she was going to work with me no matter what to give me back a decent routine. She gave up after three tries with different drugs. I am a difficult case, but easy patient according to most of my doctors. I am good friends with a couple of them.
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Wow. Okay…do you see insomnia as not a sleep disorder for the same reason…it doesn’t occur when you are asleep, only awake. Do you believe a sleep study is pointless for insomnia? RLS is technically defined as a sleep disorder because it interferes with sleep. RLS is technically a movement disorder because it affects movement. RLS is a neurological disorder because there is something dysfunctional in the nervous system. Guess what, it can fall into all three categories at once. I personally prefer “sleep-related neurological sensorimotor disorder” myself. Hits all relevant major categories at once, A disorder can belong in more than one category at a time, And btw, it’s not just “often” happening while you are awake, probably it is “only” as it is defined as sensations experienced while conscious delaying or preventing sleep.*** Of course, that includes being half or barely conscious, but your brainwaves probably wouldn’t show in a solid sleep cycle yet. At most fluctuating between alpha and theta (think that’s waking and light sleep, been awhile, so could be wrong on the label). Everyone I have heard describing them said it was preventing them from sleeping. Never mentioned they felt them while sleeping. I don’t feel it when I am partially awake and just drifting. I can think to myself hey, great, no RLS, I will be able to go back to sleep easily and the next minute it’s there because I focused on it. That is something I should research. Though I have dreamed talking about the sensations at times, I have never had a trying to find relief for RLS dream like I have had trying to find a restroom with a functional toilet dream when I have been asleep with a after drinking significant water. Pretty sure it was the PLMD that was throwing me out of my bed. That’s what pushes the blankets and pillows on the floor, tears holes in the sheets, and has my head off the side or down at the bottom instead of the top. RLS makes me twitch and scratch and then give up and bang my body against the wall or just rock and rock with loud music with a strong, consistent drum beat. Oh, and kick people who just lightly touch me. I actually hit someone once too, but generally it’s my legs that are trigger happy. Restless legs is not the movements, but the sensations nor does it directly/automatically cause the movements. My mother who had an occasional mild form of it found if she held herself still resisting the urge to move, it passed faster. For me, it made it worse, but I got my dad’s version (I don’t know if her dad had it, her mom didn’t, so it may not have been the vicious genetic version I got from dad). It’s the hoping for relief that causes the movements. Can be so intense, not moving is painful. PLMD is directly movement, the moving around in bed while asleep, otoh. They can get confused because so many with RLS have PLMD, but not the same. I have said 24/7 in describing my RLS, you made me think about this and maybe I need to switch it to 18-20/7 for precision.
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Right, so if you have a psych degree, you should be familiar with the monoamine hypothesis for depression. Since you didn't make the connection between my initial comment regarding the similarity RLS has to depression, I'm going to go out on a limb and say that your degree didn't actually got into the physiology or it's very much out of date.
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Distinction without a difference. The point is that you didn't natively know it and had to consult material outside yourself, hence the term "looking it up". You had to look up the doctor who eventually gave it to you, yes? Note that I didn't say that that sleep study was entirely useless, just pointless. As I asked before, why would I bother ordering a sleep study on something that isn't a sleep disorder? If insurance companies are supposedly making it unprofitable to listen to your patients, why are you acting like ordering superfluous tests that will cost you more as a patient is somehow a good thing? If you come to me with RLS, I'm not going to order all that. I'd just give you a low-dose dopamine agonist and reevaluate in 6-ish weeks.
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This is still making me laugh. How often do you do this kind of thing? Back between 97-05 when I was getting shuffled between doctors because they finally knew it wasn’t hypochondria after all, but weren’t comfortable drawing outside the very limited lines that were available to GPs and sleep specialists on it at that time, at least in Canada (at least the Canadians never treated it as depression, by then I had got the Chronic Fatigue label which was a step in the right direction). I would last 2 or 3 appointments and then get pointed in the direction of the next specialist. At that time a couple of these doctors assumed I was a medical professional (I used the correct terms in the correct way, was able to anticipate protocol suggestions and discuss with them why and why not for certain treatments, etc). Two said I was much better informed than they were and I know they weren’t just being nice because they were asking my advice of where they should go find the info. And one discussed with me in detail what his then experimental treatment he was thinking might be useful for rls and why and if he could use me to test it. I let him know it probably wouldn’t be that effective (more hinted as I didn’t want to discourage him from trying to find something that worked), but fun to try. That lasted a few times until he went to a conference and heard from the experts that I was right about the likely effectiveness. He then passed me on to a neurologist and that sleep study had that doctor telling me I ran a marathon every night….on the drug, which was validating, but disappointing because I wasn’t given any other option with his apology even though he knew there was one that worked for me (all the doctors knew, but Canada apparently said no…and I understand why). Still no questioning on the doctor’s part that maybe their preferred drug was actually making it worse like I said it was likely going to based on the experts and my experience with the first two versions. I am grateful that the US was much more careless (seems like another all or nothing case, selfishly yay! for stupidity working in my favor for once, tragic that many others have died because they shouldn’t have gotten the drug at least in the manner they did. I don’t think I could have lasted without the change to the med that doesn’t make things bearable at the cost of long term making it worst as too many things were breaking down due to the nightly trauma. Been going to the same doc for sleep for 20+ years now. We talk about the conferences he attends and research we both do, shares insights from other patients, and I used to let him experiment me with the latest thing. Nothing else has worked though and now with my fibro, experimenting is too costly. But please, tell me what I don’t know about RLS and the half dozen or more sleep studies I have been involved with over the years from various doctors once rls became known. 😛
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Or because it’s expensive and time consuming to do it right (you have get wired up in a lab, head and legs…or at least they used to, haven’t had one for 15 years) and with a chance of it failing due to…lack of sleep. My daughter had a traumatic experience because the nurses would come in and scold her for not falling asleep…like that’s helpful telling a kid they will cause trouble if the can’t fall asleep in a strange room and bed all tangled up with wires? I finally went out and got her melatonin which she never used as too sedating and therefore that test provided very limited info, but they got to check the check boxes and not have to have the expense of booking her for another night. If she hadn’t slept, insurance wouldn’t have paid for it and the clinic would have had to swallow the loss. If we tried it again and it again didn’t work, we would have had to pay for it, so no more lab studies for her.
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No, I wasn’t depressed and specifically told different doctors I wasn’t depressed and why they should not assume that (I have a psych degree, I know the signs of depression and let them know they were missing except for sleep disturbances). The only sleep symptoms they asked about and responded to for more details was how long I slept, when I fell asleep and woke up and if I fell asleep unexpectedly (it took hours to get to sleep). And once the first doctor wrote depression, no one questioned it until I insisted it was flat out wrong (with expert medical documentation describing protocol for diagnosis and treatment and presented it very diplomatically as I used to hate disagreeing with people) …and got ignored (I watched her eyes during the appointment expecting her to turn to the document to at least read what it was and where I got ot from. She never even looked at the file, but looked at my face the full appointment, leaning forward conveying attentiveness, speaking in her reassuring tone as if she was actuakiy listening to me instead of running through her routine…which was probably very useful much of the time as it was my first and only complaint I had of her…and then dropped by my doctor.
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Nah, I didn’t look that one up. It was handed to me when I found my haven. There were doctors and nurses and researchers in the email group I belonged to that, everyone contributed what expertise they had, even if it was only what they found helpful or not in their own experience. And this shows you don’t know much of what you are talking about. Which is fine. It’s great you didn’t have to spend decades researching and experimenting yourself, thank goodness you didn’t, I wish no one had to experience this at severe or even just moderate level given sleep problems tend to expand into other areas of one’s life, but you need to recognize there are gaps in a brief summary that AI or a website might give you after ten minutes effort. I prefer doctors who have the same issue as what I or my family member is seeing them for. Makes such a massive difference in communication and detailed treatment. My daughter’s second diabetes doctor had juvenile diabetes. She has had 5 so far and he was the best. Our current pain management doctor has migraines himself and his wife has fibro and rls and he shares info on what has worked for him and family and does research on questions we come up with in part because it could help him and his family to expand his knowledge…plus he is just a really great guy. Most of my doctors couldn’t be bothered to look up what was beyond standard protocol. In the email RLS group, the people who came up with the best info were the sufferers; caregivers may have motivation, but they don’t usually have the intense focus and ability to pick up on small details in my experience. That group was years ahead of the usual online stuff in finding info. As part of the elimination of other possibilities as well as to see what other issues might be along side RLS (Periodic Limb Movement Disorder is often connected with RLS), a thorough work up for the diagnosis of RLS should include a sleep study even if a sleep study can’t demonstrate one has RLS. https://www.rls.org/diagnosis-treatment It’s not required for an official diagnosis, but given the likelihood of additional issues, it’s wise to get it done and if insurance covers it, the good doctors I know and have heard of will do them. One way to help rls is to remove as much stress as possible and especially to improve sleep. Finding out other issues through a sleep study helps that big time. Over 80% of those with rls also have PLMD, up to 30% may have sleep apea (I do, but not enough to require a cpap). Dismissing a sleep study as not that useful is viewing rls in isolation, which is rarely the reality Same with ferritin levels. If insurance covers it, it’s foolish not to do the test. My ferritin was just on the wrong side of ‘too low, pump it in’ to get insurance to pay for an iron infusion. Daughter got one off her ferritin test this last November, very helpful for several months, cut her meds in half. If I hadn’t insisted my doctors test me for that based on the experts’ advice at that time, I wouldn’t have a clue why contrary to expectations, my rls has improved in the last 6 years and I would likely be wasting money and causing other issues due to a couple of supplements I thought were helping as the only visible change in my routine, but weren’t and instead did cause issues for my tinnitus and could have potentially liver (ferritin levels have shot up recently).
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It isn't unique to them, but this is certainly a case where the Skinner meme applies. "Am I the problem? No, it's the bigger group that is the problem". Look at all of the excuses made for it. Racism Sexism -phobia Affluenza Poverty The first three are especially popular, and when it's pointed out that the labels are illogical or that past realities are no longer reality, other concepts have to be introduced. See the concept of "microaggression". See "equality" being replaced with "equity" with nary a word said about when those things will be satisfied, almost like the advocates of such don't want it to be satisfied. They just want an excuse to do as they please based on past problems they never faced and current "problems" they have to either exaggerate or manufacture whole cloth without any regard for the damage it will cause. While I think their politics are atrocious, Key and Peele did a skit about 12 years ago called "Office Homophobe". The last 20 seconds or so is something that never seems to be considered by the population at large.
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Of course I looked it up, why wouldn't I have? You certainly didn't know that it had been described as early as the 1600s without looking it up yourself. The issue is that you're missing the point. While it may have been described that long ago, the description provided can be applied to several other conditions as well, which makes bringing it up a pointless argument. A doctor likely didn't recommend a sleep study because a sleep study generally isn't used to diagnose restless leg syndrome at all. It CAN be used, but it usually isn't because it isn't all that useful. He likely thought you were depressed because you were describing symptoms that go right along with it. Even then, the current prevailing hypothesis for RLS is similar to depression No one here's arguing that pointing out stagnation is equivalent to saying there's no value. The point is that everything is a two-way street, and the popular opinion is that institutions are always held to a higher standard while those that inhabit them who aren't in leadership/provider roles aren't. Again, see RLS. You complain that a sleep study wasn't done, but you lack sufficient knowledge about the usefulness of a sleep study in diagnosing RLS to justify your criticism. Hint: A sleep study won't help work out a dopamine deficiency, which is the current prevailing hypothesis for the cause of RLS. It would've been a pointless study and therefore a pointless expense. It isn't really a sleep disorder at all (especially since it can occur while awake but still), but something more akin to Parkinson's. Insurance companies haven't made listening to patients unprofitable. If anything, the opposite is the more likely case. If doctors don't listen to their patients, they wouldn't make any money at all as people would stop going.
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I don’t have as much experience talking to men about these kinds of things so I didn’t feel comfortable in speaking for them in this way, but I have only met a handful of women who didn’t self blame at least at the start of realizing they had some issues…not in everything, but to act like everyone shifts blame these days, refusing to be accountable for oneself is ignoring why a good portion of people need to get to therapy. If people’s behaviour was as similar as some of these global descriptions suggest, there would be a lot less miscommunications and false expectations in the world because people would be a lot more predictable than they actually are. I do believe if someone gets connected to a group that sets up the dialogue into blaming others as I have seen with some former member groups, people start picking up the language and focus of that group***. And that can lead to some unhealthy habits. Always a good reason to stop and look at what kind of group one is joining, how they talk about themselves and others before the connections are too solid. Also there should a a distinction between behaviour in a group and behaviour on one’s own. Adopting a group’s language while interacting with them does not always mean you define life in the same way as others in that group or would describe things that way if outside the group. ***this can happen with members too. Preaching that exmembers who point to the Church as the reason they left are habituallly shifting the responsibility to others rather than accepting responsibility for oneself…how is that not doing the same thing, dumping all the responsibility on the individuals leaving rather then recognizing weaknesses and trying to improve the institution one belongs too?
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Chapter 4 is especially concerning since it opens the door for pointing out the likely possibility of not only infiltration of the medical system by ideologues, but external pressure from special interest groups to effectively force prioritization of affirmative care. We already know that doctors have been successfully sued for refusing to provide, and while the lawsuit was based on non-discrimination laws, that creates other problems, namely at what point does that end and "do no harm" begin? They'll get sued for not providing the care and then get sued again years later by the same people for providing the care that has caused them harm. It's a constant Catch-22 brought about by the shrill, jackbooted trans lobby.
