BBC vCJD documentary : Hi everyone, I watched the... - Thyroid UK

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BBC vCJD documentary

Hormone-hell profile image
58 Replies

Hi everyone,

I watched the documentary last night on the emergence of vCJD after cows became infected in the 90's.

I understand that this was because regulations were different back then, but it has made me feel very worried about thyroid hormone.

I am a big worrier in general, but a while ago I decided to switch to NDT after I struggled with T4 so much, although I am still working out what works best for me after watching the documentary I now feel uncomfortable with taking NDT as,I feel I do not know much about the manufacturing process.

Unfortunately I have noticed T3 is a lot more expensive and I am definitely not going to convince my doctor or endo who already took it away a while ago. I am also really not in the right place to fight for it right now, what do people think about this? Should I stick with NDT or change to T3 + T4?

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Hormone-hell
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SeasideSusie profile image
SeasideSusieRemembering

Which NDT are you taking? If it one of the brands such as Armour, Erfa, NP/Acella, WP, NatureThroid or a Thai brand then they are porcine, nothing to do with cows.

Hormone-hell profile image
Hormone-hell in reply to SeasideSusie

Hi SeasideSusie,

Thank you for your reply, I am taking NP/acella currently.

I see, I still feel a little worried about if the animal got ill etc.

SeasideSusie profile image
SeasideSusieRemembering in reply to Hormone-hell

I see, I still feel a little worried about if the animal got ill etc.

But it wouldn't be vCJD and if there were any problems with pig illnesses I'm sure we'd hear about it.

TSH110 profile image
TSH110 in reply to SeasideSusie

Good point that pigs are not cows one I quite overlooked! 😂🤣😂 🐖 x= 🐄

SeasideSusie profile image
SeasideSusieRemembering in reply to TSH110

:D

BadHare profile image
BadHare

I didn't watch the documentary, but have read about this several years ago. I've been concerned since the initial vCJD outbreak as I occasionally ate meat up to 32 years ago, so may be a carrier. When I tried Thyro-Gold briefly, it was made from certified BSE free cows. I don't worry about the porcine NDT I take, despite being other viral/parasitic issues with pigs though I trust the source I currently buy from as being certified safe. However, I did wonder whether RLC Laboratories stopped production due to serious contamination & hushed this up after discussing this with a microbiologist friend who worked in the pharmaceutical industry. I find NDT repulsive as I'm otherwise vegetarian, but just don't feel as well on T3 as NDT.

Hormone-hell profile image
Hormone-hell in reply to BadHare

Hi Badhare,

Thank you for your reply, I was bought up vegetarian but only a couple of years ago after suffering with low ferritin and feeling terrible on T4 I decided to add lamb liver to my diet and give NDT a go.

Well now I am put off lamb liver again and I feel concerned about NDT as I just feel like when lots of money is involved I can't trust companies/government to tell the truth, but like you said, I just don't feel good on T4 and the 25mcg T3-was difficult to cut to get to 5mcg.

It's really bothered me and I am not in a great place either, but saying this when I first started levothyroxine I did contact some of the companies and asked if they are vegetarian, to which they said no because the way the lactose is derived it uses animal rennet and most of the T3 brands have gelatin in, so it seems there is a risk anywhere with contamination.

BadHare profile image
BadHare in reply to Hormone-hell

You're welcome!

Could you reduce T4 to account for the extra T3, or does your dosage need to be that precise?

It's not easy being ethical, but I don't feel so bad when my health is at stake, though I didn't like meat anyway. Maybe one day someone will invent a thyroid medication with everything we need rather than what we're told we need!

Hormone-hell profile image
Hormone-hell in reply to BadHare

Hi BadHare,

Unfortunately It needs to be precise, I can't take more than 5mcg T3, or more I don't think I need more than that as I go hyper, I don't know what it is about synthetics hormone but it seems to take longer for me to get used to.

It's definitely not easy being ethical, I really hope someone does create something better, it's an annoying predicament to have, it doesn't help I am so anxious all the time too.

TSH110 profile image
TSH110 in reply to BadHare

I loathed meat too I was the kid that always ate her veggies!

TSH110 profile image
TSH110 in reply to Hormone-hell

Didn’t know that about synthetic T4 and T3 being non vegetarian I don’t feel so bad about taking NDT after all! As for being ethical it is a minefield - ever looked at ethical investor that can really throw a spanner in the works some health food companies invest very unethically indeed

BadHare profile image
BadHare in reply to TSH110

Lactose is veggie, but would make it non-vegan.

TSH110 profile image
TSH110 in reply to BadHare

But the rennet to get it mentioned by Hormone-hell isn’t. Now Cheshire cheese was never made with rennet it is our oldest recorded cheese in the uk being made by the Romans, the place name Cheswardine means cheese farm. I regard it as the finest cheese on the planet - I could never be a vegan and eat that weird stuff they call vegan cheese!

BadHare profile image
BadHare in reply to TSH110

Whoops, missed the rennet. Odd thing to put in given its use in cheese making. I always loved Cheshire cheese when I was small(er). Great for Welsh rarebit, though I think Caerphilly was traditional. I didn't know that about the name, despite being born there.

Nut cheese is pleasant if it's thought of as more like a veg pate. Soy cheese is horrible, & till I learned to avoid tasting it, gave me mouth ulcers in 20 minutes

I liked veg best. The relative that sneaked meat off my plate to stop me getting in to trouble had cancer twice & a stroke by 49.

FancyPants54 profile image
FancyPants54 in reply to BadHare

Which was nothing to do with their liking for meat!

BadHare profile image
BadHare in reply to FancyPants54

Processed meat is linked to greater incidence of cancer, as is morbid obesity.

TSH110 profile image
TSH110 in reply to BadHare

Good point

TSH110 profile image
TSH110 in reply to BadHare

Caerphilly is a darn good cheese too! Welsh rarebit Makes me think of my dad he was great at making it 😊 I feel very sorry for your kind meat eating relative.

TSH110 profile image
TSH110 in reply to BadHare

Yes that is an astute distinction. I think there is vegan cheese though and it does taste horrid (in my opinion)

JumpJiving profile image
JumpJiving in reply to Hormone-hell

Did you check if Teva is vegan? It is lactose-free, which is why I take it (I'm allergic to lactose).

TSH110 profile image
TSH110 in reply to BadHare

Yes I was a vegetarian of 35 years but felt so atrocious on T4 only I was desperate and I decided to try NDT rather than top myself. The effects were so miraculous I have remained on it ever since. I tell myself no one kills pigs just for NDT it must be a biproduct of the meat industry. I regard pigs with a near sacred reverence for restoring my health. If I had been offered T3 on the NHS I might never have had to use NDT. It does appear to be superior in all the latest good quality studies.

BadHare profile image
BadHare in reply to TSH110

That's how I feel, though I gagged every day for the first six months, & couldn't touch the pills with bare fingers. I'm hoping the Metavive piggies have happy lives & as humane an end as possible!

TSH110 profile image
TSH110 in reply to BadHare

I was amazed how nice the NDT tasted - like papaya.i take mine sublingually. But pork pies omg a hideous nightmare of a thing to eat esp that jelly 🤢

BadHare profile image
BadHare in reply to TSH110

Nooo!!!

WP smelled of musty yeast to me.

No smell from Metavive as it's in a capsule.

My stomach flipped at the mention of pork pies. The jelly was to stop flies laying eggs on the meat. Icky but essential before refrigeration.

TSH110 profile image
TSH110 in reply to BadHare

I found acella quite pleasant tasting too. I never knew that about the pork pie jelly the thought of which has become even more stomach churning for me than it already was 🤮

TSH110 profile image
TSH110

Stop the Thyroid Madness say there has never been a single case reported of NDT causing CJD. I think the risk is probably zero. I just hope they have the common sense in Thailand not to feed their pigs dead animals like the profit greedy fools did here.

I would not worry about the NDT & if you get US stuff it is all FDA approved.

BadHare profile image
BadHare in reply to TSH110

The FDA has higher standards for pharmaceuticals than Europe, but animal welfare isn't so good. I wonder if the Thai NDTs are comparitively cheap because welfare is so appalling.

TSH110 profile image
TSH110 in reply to BadHare

I don’t know if there is a lot of animal cruelty in Thailand or if factory farming is big there. I just had a search there are animal cruelty laws but it does not look great reading them I’m afraid. I assumed it was cheaper because it is not a first world country so it was a case of world economics.

It makes me mad we can’t get NDT on the NHS in a country that does have better animal welfare than most countries in the world, but have to resort to buying it from where you have no idea of the welfare situation.

BadHare profile image
BadHare in reply to TSH110

This was in the paper a few weeks ago: theguardian.com/environment... I was sickened having tried Thai S for a few days.

I know rules here aren't always followed, but I hope the Metavive critters are treated better & killed humanely.

TSH110 profile image
TSH110 in reply to BadHare

and I thought being Buddhist they would be respectful. Bad things do happen here but it is much more tightly regulated so has to be better. Bad scene

holyshedballs profile image
holyshedballs in reply to TSH110

Whhhoops!! Steady on!!

its not the pigs that got BSE - its cattle. Hence Bovine Spongiform Encephalopathy. It is not known in pigs - (so far) but experiments of injecting prions into pig brains has shown prions in pig brains. Strangely no prions have been seen when prions have been fed to pigs.

THE BSE/nvCJD crisis in the late 80s early 90s was caused in 2 ways.

The first was allowing sheep parts to be included in meal fed to cattle. some sheep have a condition called Scrapie. Sheep with Scrapie were not allowed in the human food chain. They were allowed in the animal food chain. Sheep parts including scrapie affected brains were mixed with other ingredients to produce meal for cattle.

The second was inadequate hygiene control at the rendering plants which allowed scrapie contaminated utensils to cross into the supposedly clean and sterile side of production, re contaminating meal with scrapie proteins.

Conventional science thought that the scrapie protein could not cross the species barrier. but it did, casuing BSE in Cattle and nvCJD in humans, scientists believe.

Animals bred for meat are usually killed at a young age so do not exhibit signs or symptoms. The high stepping cattle shown on the media were usually old milking cows that had come to the end of their milking efficiency and lived long enough to show signs and symptoms.

Now vets check herds by blood samples and signs and symptoms for TSEs (thats Transmissible Songiform Encphalopathies) scrapie and BSE.

Suspect animals are diverted from the food chain

Meat inspectors/official Auxillaries carry out pre and post mortem inspections of animals and carcases and ensure abbatoir workers remove specific risk material (spinal cords, tonsils and brains and other nervous tissue) to prevent it from entering the food chain.

Thyroid glands are collected from the animals by technicians standing on the production line in abbatoirs. As the animals are slaughtered they are hung high on lines and eviscerated. Carcases are inspected by meat inspectors who look at gross pathology, incise and palpate organs and tissues for signs of disease. Those animals who do have signs of disease such as peritonitis or parasites are removed for further assessment. superficailly disease free carcses go further on the production line. When the throat is exposed, the thyroid gland is accesible and removed by the aforesaid technician. The glands are collected in containers and from there are taken to the factory to be sterilised and processed into NDT.

Hope that helps!!

TSH110 profile image
TSH110 in reply to holyshedballs

Ta, I had forgotten the details of the cattle feed having scrapie infected sheep in it 🤢 thanks for the detailed explanation of the disease pathology and the checks at the abattoir.

helvella profile image
helvellaAdministratorThyroid UK in reply to holyshedballs

The first was allowing sheep parts to be included in meal fed to cattle. some sheep have a condition called Scrapie.

But how do the sheep get scrapie?

holyshedballs profile image
holyshedballs in reply to helvella

My latest in formation is - no one knows for sure!!

The best guess is maternal transmission. Scrapie has not been found in Antipodean sheep and it is thought that those sheep that have it in North America are from British origin.

JumpJiving profile image
JumpJiving in reply to holyshedballs

re. "Animals bred for meat are usually killed at a young age so do not exhibit signs or symptoms."

That has worried me from the day that was introduced - putting something into the human food chain that is not exhibiting symptoms as the symptoms don't appear until the cattle are slightly older. I have a liver condition, confirmed up by an ultrasound after an unusual blood test result. I have no symptoms, but I have the condition. In a few years, I might have symptoms, but I already have the problem now. Who's to say that young cattle can't have BSE, just because they are slaughtered before symptoms become apparent?

After the initial culls, it seems likely that the reason that there are not millions of cases of CJD results from getting rid of the absurd content in cattle feed, rather than slaughtering cattle at a younger age (which IMHO was/is more of a PR thing - if people can't see cattle exhibiting symptoms then the problem is forgotten quicker).

JumpJiving profile image
JumpJiving

My biggest concern about taking NDT is the risk of a pig disease (existing or future) crossing the species barrier as a result of me taking NDT. I'd rather take synthetic T3 both because of this and because I largely follow a vegan diet and would happily be completely vegan. However, getting hold of T3 and the likely cost means that whilst I am trialing self-medication I am doing so with NDT. Given that I feel significantly better since taking NDT, it looks like I will either continue taking NDT or switch to a T3/T4 combo. I'd prefer the latter for the reasons already stated, but the question will be whether I can get either option on the NHS (with my GP's attitude and the uselessness of the GP's preferred endo I think it very unlikely). I may ask the GP to refer me to an endo from Thyroid UK's list, even if that means going outside the local area. I'm expecting a battle if I do anything other than continue sourcing and taking NDT without the GP knowing.

But coming back to the original question, without knowing what the process is of creating NDT tablets from pig thyroid, I don't know how the risk of disease transference is mitigated. That makes me a bit nervous, but not nervous enough to stop taking NDT without having synthetic T3 available.

TSH110 profile image
TSH110 in reply to JumpJiving

Given how many people must be taking NDT today and have been taking it since the 1890’s if there was a pig disease crossing over into humans from taking it, surely it would have come to light by now.

JumpJiving profile image
JumpJiving in reply to TSH110

That's why I said "existing or future". New diseases appear occasionally, whether due to bad farming practices (feeding meat and bone meal to herbivores), intensive farming, hunting of wild animals that are then sold in packed markets, or simply evolution/mutation of insects, bacteria, viruses etc. Until BSE appeared, had anybody even heard of prions? I certainly hadn't.

Personally, I do take NDT, but I wouldn't take any made in countries that are hotspots for new diseases or where hygiene standards are significantly lower than in the UK. Even for the NDT that I do take (NP Thyroid), I would like to know more about the manufacturing process to get a feel for the risk should a new disease appear in pigs. Remember, that by the time a new disease has been identified and risks to human health evaluated, the chances are pretty high that we'll have been eating whatever animal it affects for months. I'd like to know if between the slaughter of a pig and me receiving a bottle of NDT tablets, has the manufacturing process been thorough in getting rid of bacteria, viruses and prions, without getting rid of the T1-T4 (or even just T3-T4) hormones. I don't currently have that information.

TBH, if it were easier to get hold of, I'd rather take synthetic T3 than NDT. Not only am I uncomfortable with eating animals at all, but I have little faith in the practices at abattoirs and in parts of the food production chain. With scandals such as the horse meat scandal, the use of meat that had been declared unfit for human consumption, and the many undercover investigations at abattoirs, it's clear that the process is far from 100% locked down.

Hormone-hell profile image
Hormone-hell in reply to JumpJiving

Yes, this is exactly what I would like to know!

TSH110 profile image
TSH110 in reply to JumpJiving

Yes you are right that something new could be lurking and I would prefer to try synthetic T3 with T4 to see if that was satisfactory for me but hoping for that is rather like pulling hens teeth even though I have the DIO2 mutation for poor conversion and really ought to have been offered it once it was clear I still felt very unwell with optimised blood tests - though I was told one hormone level was not ideal not sure which one and I’d Just have to accept I might not feel fully better ever again. As I felt so awful on T4 and feel well on NDT (I found the Thai stuff as good if not better than FDA approved types I tried, which were very much more expensive.) I am willing to risk it as I don’t think the chance of getting a deadly illness from it is very high based on the history of the safety of NDT. Of course I could be wrong but statistically my reasoning is sound. May be one day we will get a proper choice of thyroid hormone treatment but it seems more remote every day so I don’t expect it in my life time. I nearly died of this disorder so I feel fortunate to have been able to take NDT and feel pretty well on it and every day is a bonus. We are just people trying to do the best we can under an unfortunate and unenlightened period of thyroid medical practice. I am not going to beat myself up about what medication I am taking when the real problem that has led me to take it, is out of my control.

holyshedballs profile image
holyshedballs in reply to JumpJiving

Hi Jumpjiving, you are entitled to your view on why you wont take NDT but I think that your fear of disease crossing the species barrier is not founded. New diseases are discovered all the time and bacteria and viruses are constantly evolving hence the current drive to stop anti bacterial resistance.

BUT, from the research I have read the chance of contracting a porcine disease by consuming NDT is very remote. And before you ask, I don't have any real statistics to back that up. I don't have the time to work that out. Plus I'm at work so I cant go into great detail

There are very few existing zoonoses that pass between pigs and humans. Swine Fever is disease of pigs not humans hence the name. Precautions are taken because it is very virulent and infects other pigs quickly. Precautions are taken mainly as economic measures to protect other farmers as infected animals lose condition very quickly and die very quickly. It is thought that swine fever is passed to other pigs by infected droplets, not by eating the meat of infected animals

Most pig parasites are either in the lungs or intestines no the thyroid gland and are easily spotted by meat inspectors in the UK abattoirs. The thyroid gland is not a significant reservoir of non thyroid disease so it is not listed as one of the organs or tissues that has to be thoroughly inspected by vision palpation and incisions.

I also don't think it fair to taint those producers who follow the rules for welfare and hygiene with the brush of criminals and their activity. I looked at Armour Thyroid on the web - I cant go and inspect their factory but they are FDA regulated. They had proper audit trails to ensure product safety. I'm not sure about ThyroGold because that information was not available on the web.

I think that the risk of contracting any disease from consuming NDT derived from European, US or Antipodean pigs or cattle slaughtered in export approved abattoirs is very low to negligible.

JumpJiving profile image
JumpJiving in reply to holyshedballs

@holyshedballs

I think you’re misreading or misinterpreting what I said. Not intending to get into a debate, but just to clarify points that you raised:

> you are entitled to your view on why you wont take NDT

I said that I DO take NDT

> from the research I have read the chance of contracting a porcine disease by consuming NDT is very remote

I agree, but the authorities and research probably said the same thing about cattle before BSE and CJD.

> Swine Fever is disease of pigs not humans hence the name

Bovine spongiform encephalopathy is a disease of bovines, but it still resulted in CJD in humans who consumed affected meat

> The thyroid gland is not a significant reservoir of non thyroid disease

Use of the word significant implies that there is some non-thyroid disease there. Just being picky.

> I also don't think it fair to taint those producers who follow the rules for welfare and hygiene with the brush of criminals and their activity

I didn’t

> I looked at Armour Thyroid on the web

I also looked at Armor/Armour Thyroid. I decided against taking it because of the titanium dioxide used as a coloring/colouring. Sometimes non-organic compounds have the potential for risks too

> I cant go and inspect their factory but they are FDA regulated.

Boeing are regulated by the FAA. We know how well that worked for the Boeing 737 MAX, the passengers and crew

In my own line of work, I have seen products and processes certified to international standards (BS EN ISO) when they were so riddled with problems that I personally identified more than a thousand defects in just one of those products.

> I think that the risk of contracting any disease from consuming NDT derived from European, US or Antipodean pigs or cattle slaughtered in export approved abattoirs is very low to negligible.

I agree, but not zero. That’s why I would prefer synthetic T3 if it were available more easily. That was my point

posthinking01 profile image
posthinking01

The risk with NDT as it is porcine is swine fever that affects pigs.

TSH110 profile image
TSH110 in reply to posthinking01

I have never heard that before where’s the evidence you get swine fever from NDT?

holyshedballs profile image
holyshedballs in reply to posthinking01

From the research I have read the chance of contracting a porcine disease by consuming NDT is very remote. And before you ask, I don't have any real statistics to back that up. I don't have the time to work that out. Plus I'm at work so I cant go into great detail. There are very few existing zoonoses that pass between pigs and humans.

Swine Fever is disease of pigs not humans hence the name. Precautions are taken because it is very virulent and infects other pigs quickly. Precautions are taken mainly as economic measures to protect other farmers as infected animals lose condition very quickly and die very quickly. It is thought that swine fever is passed to other pigs by infected droplets, not by eating the meat/tissues of infected animals

Most pig parasites are either in the lungs or intestines not the thyroid gland and are easily spotted by meat inspectors in the UK abattoirs. The thyroid gland is not a significant reservoir of non thyroid disease so it is not listed as one of the organs or tissues that has to be thoroughly inspected by vision palpation and incisions.

I think that the risk of contracting any disease from consuming NDT derived from European, US or Antipodean pigs or cattle slaughtered in export approved abattoirs is very low to negligible.

serenfach profile image
serenfach

holyshedballs gives a very good description of how cows were infected by BSE, but missed out one vital fact. The government changed some legislation that allowed the temperature to be dropped that the meal had to be cooked at, allowing the scrapie proteins to survive.

Pigs are designed by nature to be able to eat just about anything, and their guts cope with just about anything. They were not fed the infected meal as this was a specific mix for cattle.

The risk of getting BSE from NDT is about the same as me winning the lotto. I dont do it. :)

TSH110 profile image
TSH110 in reply to serenfach

If pigs had been fed infected meal would it have had any impact disease wise?

I never do the lotto either.

holyshedballs profile image
holyshedballs in reply to serenfach

Yes serenfach i did miss that out!!

serenfach profile image
serenfach

There has never been a case of mad pig disease. Pigs are very like us in their bodies, as we can use pigs heart valves for our own hearts. I have had some stroppy pigs over the years but none were as mad as me!

TSH110 profile image
TSH110 in reply to serenfach

😂🤣😂 did you keep them? I would love to have pigs but I looked into it and was very surprised at the strict levels of regulation and realised it was not going to be an option for me. I hear they are very intelligent and affectionate. Seems a shame we kill them for every last bit of their bodies. I heard their skin can be used for human burns and some diabetic medicines are derived from them. It is very interesting that such cross overs can work. If parts of a pig are used in humans is it necessary to take immuno -suppressant drugs to stop rejection, I presume they must be needed.

holyshedballs profile image
holyshedballs in reply to TSH110

Pig anatomy is similar to human anatomy. So much so that ancient medical schools used pigs organs to describe human organs. This approach was not helpful especially with the liver. The human liver doesn't have any defined lobes just areas but pig livers have 4 actual lobes and a caudate lobe. The so called human liver lobes are brought over from the first anatomists. Its a mystery to me why some schools insist that the human liver has 4 lobes when there are 2 "sides" to the liver, divided by the falciform ligament.

Apparently, swine meat tastes like human meat, which is one of the reason why the Bible says that we shouldn't eat pork.

serenfach profile image
serenfach in reply to holyshedballs

I kept a herd of Wild Boar for over 15 years, and had rare breed pigs for years before that.

Humans were called "the long pig" by some tribes....

TSH110 profile image
TSH110 in reply to serenfach

Sounds brilliant! I thought wild boar could be quite aggressive and dangerous but having a herd sounds amazing. I understood it is the reason why uk robins are almost tame with people, but in France etc they totally ignore humans because in nature it was the wild boar they followed for insects turned up from their diggings. As the wild boar died out here they turned their attentions to our diggings as we were about the next nearest thing to the boar. I always have a robin close by on my allotment as I work away there. I was very taken with Vietnamese pot bellied pigs - quite bristly but very friendly indeed. They are pretty massive. I think the tribes in Papua New Guinea were cannibals and used that term for humans 😳

TSH110 profile image
TSH110 in reply to holyshedballs

Fascinating - thanks!

serenfach profile image
serenfach in reply to TSH110

Wild Boar are dangerous, but only agressive if cornered or they have young. Fascinating creatures - almost unique in the animal kingdom in that the male and female are equal, which apparently is why they often crop up in medieval tales. I can wax lyrical for hours about them!

I hope you find a way to feel better soon.

TSH110 profile image
TSH110 in reply to serenfach

I like them even more now 😊 I wish I could listen to your wild boar lyrical waxing I have an infection in my right hand which has totally grounded me I feel a bit fed up but relieved it is resolving - blew up like a balloon very rapidly which was a tad concerning - I was glad to wrestle the rings off. It’s all moon walking on radio 4 - give me tales of wild boar any day!

posthinking01 profile image
posthinking01

Hi there - I stopped eating any pork products due to Hep E issues.

serenfach profile image
serenfach

Very very very rare in British pigs, and if you cook it properly, there is no risk at all. All livers are inspected at slaughter housesin the UK and the whole carcass is condemned if the liver is infected.

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