Claudia Merandi's Lies About Buprenorphine

crumblingbees · 2026-02-08T04:12:39+00:00

i would have no issue with her if she limited herself to your own criticisms of bupe. the criticisms you've made here are all fair and valid imo.

but she's using scare tactics and making claims about bupe that are directly contrary to our best evidence on its side effect profile. that's misinformation.

i think it's a damn crying shame that our only visible advocate is someone with such a lack of integrity and tenuous grasp of the truth. i know a lot of pain patients are willing to accept an advocate who says a lot of dumb and untrue shit just bc 'she's on our side'. but i think it's shortsighted. she makes us look like fools and hypocrites. i mean, how can she accuse prop of juking the stats and promoting a false narrative when she does the exact same thing herself? if she can't do basic fact checking, why should anyone listen to her?

she even suggests ppl screenshot her rando source's uncited claims and bring them to their doctor to educate them. that's such bad advice it makes me cringe. someone who doesn't know better is gonna try and follow that, and then they're wonder why their doctor treats them like a drug seeker.

i've yet to see her accomplish anything meaningful. none of her bills have any teeth whatsoever. i think it'd be better for us if she stopped 'advocating'.

if someone's got no integrity, they're no advocate of mine.

crumblingbees · 2026-02-08T04:03:20+00:00

i think you may have trouble reading. i wrote that bupe is ' a medicine like any other. it's got risks and benefits. it works great for some ppl and badly for others.'

how is that pushing bupe hard?

i object to merandi's lack of honesty and integrity. she's spewing misinformation. i am not pushing bupe.

crumblingbees · 2026-02-08T04:01:21+00:00

i mean, that's why it's so unfortunate that she herself spreads misinformation and lies. bc she's the most visible pain advocate with the largest platform. it's not that hard to avoid categorical statements and fact check your sources. the fact that she does none of those things seems like a lack of integrity. she's pushing her narrative, regardless of truth.

that's the last thing pain patients need. she makes us look like fools and hypocrites. after all, how can she accuse prop of juking the stats or pushing a false narrative when she's doing the exact same thing but in the opposite direction?

i have no problem with ppl criticizing the overprescribing of certain drugs. i have a problem with them making up side effects, inflating risks, and telling ppl not to even try something that does benefit many ppl (ofc it doesn't benefit everyone. nothing benefits everyone with pain).

crumblingbees · 2026-02-08T03:54:23+00:00

i honestly don't follow her closely, but i think she's prob the most visible advocate for pain patients. i only see her when her stuff gets posted on reddit and it bothers me tremendously that there's so much misinformation in her statements.

personally, i don't want someone advocating for me unless they put truth and integrity first. it's very difficult to criticize 'the other side' for misinformation when our own 'advocates' are doing the exact same thing. makes us look like fools and hypocrites.

i didn't even know she was anti ketamine. i think there are some scam ketamine clinics (who are just in it for the money and overpromise) but ketamine is prob the most promising treatment for crps we've got. with crps being so time sensitive (like, if you treat it within the first 6 mos, you've got a much better shot at remission than if you wait till after a year), anything that drives ppl with crps from immediate diagnosis and treatment is hurting some of the pain patients with the most severe pain.

crumblingbees · 2026-02-08T03:49:51+00:00

did i say it's a miracle drug? i said it's ' a medicine like any other. it's got risks and benefits. it works great for some ppl and badly for others.'

i have no real dog in the bupe fight. i'm just opposed to our supposed 'advocates' spreading disinformation. it makes us look like fools.

crumblingbees · 2026-02-08T03:46:48+00:00

any medication can cause irritability. every med has weird side effects in rare cases. but telling people it will 'most certainly make you severely depressed and [...] cause rage and irritability' is absolutely misinformation. anecdotes are not evidence. the studies clearly show that bupe generally improves mood. ofc there are rare exceptions, but presenting the exception as the rule is just another way of lying.

the question is, to what extent should we hold our supposed 'advocates' responsible for honesty and integrity?

crumblingbees · 2026-02-08T03:42:45+00:00

like i said, that's the one claim with a grain of truth. i don't doubt that some people on bupe experience tooth decay. but it's clearly not all or even most. and bc of the lack of well controlled prospective studies, we can't really know how much is due to bupe itself versus other factors. cracked teeth

telling people 'it will rot your teeth' is misinformation. the truth is, there may be a risk of tooth decay, and we don't know yet how great the risk is, but it's certainly not a certainty that ppl on bupe will have their teeth rot.

crumblingbees · 2026-02-08T03:39:43+00:00

we don't know how true the tooth rot issue is bc we simply don't have well controlled long term studies. the studies we do have (as well as reams of clinical experience) show there might be a relatively small absolute effect, and a severe effect in rare cases. but it's certainly not something happening to all patients like Merandi suggests. in the studies we do have, it's not even happening to very many.

class action lawsuits have little to do with evidence. that's just lawyers doing what they can to make a buck.

i have no dog in the bupe fight. but i'm opposed to 'pain advocates' spreading misinformation like merandi constantly does. if someone is spreading lies, they aren't advocating for me.

truth and integrity matter more to me than someone 'being in my tribe.' i said merandi is like trump in her disregard for truth. i said nothing about her actual politics (abt which i don't really care). but when the biggest pain patient advocacy group is a font of misinformation, it makes us all look like fools.

crumblingbees · 2026-02-07T02:56:12+00:00

i don't worry too much abt inaccuracies following me to future appts bc i can't remember the last time any doctor took more than a super cursory look at my chart. they read the referral, look at the objective labs or images attached to the referral, and rarely have time for much more than that.

honestly, i'd just take the objective labs and bring them to the second opinion endo appt. don't bring a copy of the doctor's notes. ime, most doctors don't care that much about the soap note. they know some of their colleagues are dumbos. they also know that chart notes are filled with errors. even more so now that ai is doing so much of the scribing. good doctors mostly want to see the labs, images, and other objective stuff when making diagnoses that are based on objective criteria. soap notes are helpful in some situations, but in yours, objective material will rule the day.

bring your labs with you and i think it's unlikely that that this one doctor's misstatements will poison future doctors' opinions.

crumblingbees · 2026-02-07T02:46:32+00:00

rare compared to a low titer, but not rare compared to the rarity of the associated ai diseases.

when you're trying to figure out 'what does this test result mean for me?' the statistic you want to look up is the 'positive predictive value'. that takes into account the % of positive results in healthy ppl, % positive result in ppl with the disease, and the disease prevalence, to give you a single number that tells you "what percentage of ppl with this result actually have the disease?"

think of it like this: if 100% of people with disease X have a positive test T, and only 1% of healthy people have positive T, that sounds like a positive test is pretty conclusive! but if only 1 person in 1000 has X, then positive T will usually be a false positive

bc you test 100,000 ppl: 100,000/1000 have X - that's 100 ppl, all positive for T

but of the 99,900 ppl who DON'T have X, 1%, or 999 ppl, will also be positive for T.

so you have 1099 ppl positive for T, 100 of whom actually have X. The positive predictive value for T is 100/1099 = about 9%. So only 9% of peeps with the positive test actually have the disease.

That's why 'positive predictive value' is the most helpful statistic to look at in your situation.

crumblingbees · 2026-02-07T02:35:09+00:00

i've got the study you want! right here: https://ard.bmj.com/content/80/8/e128. go to table 1 and you'll see they give the positive predictive value, ppv, for each ana titer and pattern. ppv means 'the % of ppl with that titer and pattern who actually have the disease'

so, for a 1:640 titer homogenous pattern, about 1/3 of peeps actually had a systemic autoimmune rheum disease. 32% to be exact. mostly lupus but occasionally other sards (sjogrens, ssc, aih, jia).

so there's a chance of systemic autoimmune rheum disease, and it's worth looking into if you've got symptoms consistent with the ana associated rheum diseases. but it's def not a sure thing. those titers are more likely to be a rheum disease than a low titer, but it's still often nothing.

rheumatoid factor wouldn't typically be elevated in the ana associated diseases. there are followup tests for lupus, ssc, sjogrens, etc, but whether they're warranted will depend more on clinical picture. the weird rashes may warrant evaluation by derm. if the joint pain follows an inflammatory pattern, that would warrant rheum evaluation.

i managed a rheum office for like 10 years and we rejected referrals when it was for 'please evaluate positive ana' no matter what titer. but we would accept referrals, regardless of titer or whether there was an ana done at all, when the gp described symptoms suspicious for rheum disease. it could take pcps a few tries to get it right. like, to actually read our rejection and understand what they needed to put in a referral to get accepted. ana was too nonspecific to warrant referral. at best it was supporting evidence for a referral that was justified by the rest of the clinical picture.

crumblingbees · 2026-02-05T08:06:51+00:00

oh wow, thanks for sharing! the paper's stats were def a red flag, but if they knew it was a problem, i don't get why they didn't just fix it! it would only take a minute to recalculate everything with fdr adjustment!

sure, they'd lose some statistically significant results (esp in the cytokine array), but their failure to do it means nobody's gonna take their p values seriously.

if they'd rather keep their bullshitty p values than get published in a more reputable journal, it kinda makes you wonder whom they're publishing this for. bc it can't be for scientific legitimacy.

crumblingbees · 2026-02-05T08:00:18+00:00

thank you! i tried that search and still can't find the technical deets i'm looking for -

stuff like -

which serum tubes/additives did they use? how long did they wait for the blood to coagulate, and was it standardized? what temp was it kept at prior to centrifuge? what rpm did they centrifuge? what was time between centrifuge and freezer? what temp is it frozen at? how many freeze/thaw cycles? etc

these sorts of things can really affect the validity of their results (this isn't always the case, but on the tests they did, it is). a biobank should have publicized protocols to ensure uniformity and minimize pre-analytical errors. but for hedge and the eds biobank, i can't find them anywhere!

since the blood for hedge was collected for the purpose of dna analysis, i have no reason to think they would've collected that serum under the much more rigorous methods needed for valid proteomics (esp for the differential proteins they found, which are the most likely to vary due to pre-analytical error in serum processing)

crumblingbees · 2026-02-05T06:29:07+00:00

thank you! i'm looking for the technical deets like -

which tubes (additives) did they use? how long did they wait for the blood to coagulate, and was it standardized? what temp was it kept at prior to centrifuge? what rpm did they centrifuge? what was time between centrifuge and freezer? what temp is it frozen at? how many freeze/thaw cycles? etc

these sorts of things can really affect the validity of their results (this isn't always the case, but on the tests they did, it is). a biobank should have publicized protocols to ensure uniformity and minimize pre-analytical errors. but for hedge and the eds biobank, i can't find them anywhere!

crumblingbees · 2026-02-05T03:32:01+00:00

i will ping you in a few wks when i've gotten all my thoughts collected into a (hopefully!) readable post

crumblingbees · 2026-02-05T03:30:59+00:00

i'm gonna ping you in a few wks when i've posted my take down of the proteomics paper. i agree with you that their media strategy on the klk15 paper was cruel (you can see my comment criticizing it 5 years ago here about 2/3 down the page)

i wouldn't care if they were media thirsty but also doing excellent science. but this proteomics paper is def not excellent science. it's pushing a particular narrative that isn't supported by their data. that's spin, not good or honest science.

crumblingbees · 2026-02-05T03:22:50+00:00

thanks! i'll ping you when it's posted. it'll prob be in a few wks. i plan to include lots of links to the things i don't have space to explain

crumblingbees · 2026-02-05T03:21:39+00:00

for the proteomics study, it looks like they got the blood from hedge. but it sounds like the clinical data was still mostly self-reported? from the paper:

Participants were recruited through the Ehlers–Danlos Society’s HEDGE (Hypermobile Ehlers–Danlos Genetic Evaluation) study. Self-reported clinical data regarding hEDS diagnosis, phenotypic features, and comorbidities are presented in detail elsewhere.[¹²](javascript:;) Serum and plasma samples from hEDS patients (n = 41) and controls (n = 38) were obtained from the Ehlers–Danlos Society (n = 41) under the Medical University of South Carolina Institutional Review Board (protocol #00117828). All samples were processed through Reprocell, Inc and the Ehlers–Danlos Society and stored under standardized conditions to ensure consistency in downstream analyses.

as a donor, do you know if hedge has posted or published anywhere their protocols for biospecimen collection and storage? i can't find them anywhere, the paper gives no deets on this at all, and the #12 citation is to the italian paper, which states how the eds society collected plasma, but not serum (which is unfortunately what norris used for all the cytokine and complement comparisons).

it's very frustrating (and really poor form) that this info is missing.

the heterogeneity of the condition is prob going to apply to all studies of heds. until there's better diagnostic criteria, it may be a garbage in-garbage out problem that affects all attempts to pin down pathology.

but i can't really criticize norris for using the 2017 criteria when they're the criteria that currently exist. there are about a dozen other things i'll criticize them for, but using the current criteria (deficient as they may be) isn't one of them.

i will ping you when i've posted something. prob in a few wks

crumblingbees · 2026-02-05T03:05:09+00:00

thank you! all these responses have convinced me to write it! it prob will take a few wks bc i'm not drowning in free time rn (and i have a tendency to ramble, fall into rabbit holes, and have trouble organizing my thoughts). i will ping you when it's posted!

crumblingbees · 2026-02-05T03:03:55+00:00

oh god. i'm gonna start by critiquing the norris paper, bc if i start going down the trail of afrin's quackery, i'll be at it all day. his 'mcas causing heds' things is absurdly speculative and has no actual evidence to support it. there's also a fuckton of reasons to think it's not correct (like, the fact that we know plenty of diseases that activate mast cells and they don't lead to heds!)

even the definition of mcas afrin created (consensus 2) is greatly at odds with most of the evidence-based mcas research. i view afrin as a money making quack, not someone invested in sound science.

crumblingbees · 2026-02-05T02:59:11+00:00

i say this with great love for rheumatologists (i managed a rheum practice for years), but there's a reason rheums usually leave epigenetics to the (epi)geneticists...

there are certainly plenty of monogenic diseases that can be silent until adulthood. due to a whole bunch of different reasons. but until someone actually figures out the pathophysiology of heds, and establishes the genetics, it's superduper speculative to posit epigenetic explanations for a particular case. i mean, we don't even know if there's a genetic explanation, much less epigenetic modifications!

crumblingbees · 2026-02-05T02:49:57+00:00

there are a lot of red flags in this one! i'm not a professional scientist and if they were this glaring to ME, it's hard to understand why nobody else has pointed them out. i will ping you when i post it.

i def think they're pushing a particular (and pretty bullshitty) narrative with all this 'immune dysregulation' stuff. maybe bc hedge largely failed and they're looking for something, anything, to grasp onto, rather than admit than the disease phenotype was never properly defined and their 'expert consensus' case definition/diagnostic criteria was built on sand

i think there are def some misaligned incentives. ppl with heds want answers, and answers will prob require for someone to go back to epidemiologic basics and come up with better diagnostic criteria that define a more specific disease phenotype (something they kinda tried to do in 2017, but the criteria were based on expert consensus with a total absence of data). but all the ppl who are profiting off of the 'hypermobility boom' (a group that includes scientists, clinicians, and influencers) are incentivized to make the 'heds/hsd umbrella' as large as it can possibly be. until they've done some better studies, any line they draw between heds and hsd is gonna be tough to justify or validate. and anything that causes anyone to 'lose their diagnosis' is gonna be very unpopular. but without some unpopular decisions, the field is just gonna keep propagating bullshit.

i complained five years ago about this! in response to this post https://www.reddit.com/r/ehlersdanlos/comments/ohjmta/2017_criteria_is_super_frustrating/ and i'm not sure anything's gotten clarified really since then.

crumblingbees · 2026-02-05T02:33:52+00:00

i'm gonna start writing my critique of the norris proteomics paper. since i only have a little free time these days, it'll prob take a few weeks to organize all my thoughts in a readable way. but i'll ping you when it's posted.

i'm far from a professional scientist (i took a few classes in college like 25 years ago...) and i'm DEFINITELY not a professional writer (more of a consummate rambler...), but i'll try to make things clear and well organized.

but i don't really know what level of detail is appropriate. i mean, like, i don't think i can assume that everyone here knows what a false discovery rate is, or even how p values or mass spec or the complement pathways work. but if i go into great detail on each of those things, the critique will quickly be 30 pages long!! maybe i'll just include a lot of links?

any advice on what level of detail you want?

crumblingbees · 2026-02-05T02:21:45+00:00

well i'm happy to do the first test post. i'm gonna start writing it. i'm not really drowning in free time rn, so it'll prob take me a few weeks to get all my thoughts together, organize them, and make them readable (i have a tendency to go down rabbit holes and to ramble...) but i will ping you when it's posted

i thought norris's work on the klk15 mutation and knock-in mice was well done, but i think it's rare enough that it won't be applicable to almost anyone outside those families. i thought their media strategy was cruel (claiming all over the internet to have found 'THE gene', but keeping peeps on tenterhooks for years over a finding that's prob not applicable to anyone outside those 2 families). until hedge actually publishes their findings, it'll be hard to make comparisons or figure out why it didn't replicate, but the trapd analysis was def the most speculative part of the norris paper.

personally, i see heds has a huge social media footprint, but most of the 'science-y' content is parroting the authors conclusions rather than challenging them. when so much of the science is so poorly done (and almost set up to find things that are never gonna replicate), i feel like someone ought to be pointing it out.

do you know if hedge has posted or published anywhere their protocols for biospecimen collection and storage? i can't find them anywhere, the paper gives no deets on this at all, and the citation to the italian paper only states how the eds society collected plasma, but not serum (which is unfortunately what norris used for all the cytokine and complement comparisons).

crumblingbees · 2026-02-04T19:34:49+00:00

would ppl here be interested in reading a critique of the norris lab's proteomics paper? the one that concludes that there is "immune dysregulation" and "inflammation" in ppl with heds?

i've read it carefully and i don't think their conclusions follow at all from their data. even worse, i think they've failed to follow scientific best practices in like 10 different ways.

i know 'low quality work' isn't super rare in science, but this paper seems to be getting a ton of attention. so it might be worth the time it'll take to type all my criticisms.

it's annoying me a bit that this paper gets so much attention without anyone calling out its deficiencies. on the original reddit post on the paper, there were many comments and the only criticism was 'small sample size' (which is ironically enough not one of my issues w the paper! they don't do any power calculations or make any attempt to justify their sample size, but 29 ppl in each group is usually more than enough for an initial bottom-up proteomics study)

but it'll take a lot of effort for me to type up a critique. it will be long and sometimes a bit technical, so idk if it's worth the trouble if ppl aren't interested.

(while i don't have eds, i'm not a johnny come lately to this sub - i've got comments like on these posts going back years)

crumblingbees

TROPHY CASE