Reblog: The Importance of Stupidity

Disguise

The Importance of Stupidity In Scientific Research

– Jane Cocks

 

true, this!

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The Long Road East

I began my first solo long distance drive today, touching three states and spreading 1500 kilometres from go to woe. I’ve wanted to do this drive – or one like it – for quite some time now so I am glad it is finally happening. I just wish that which I was driving toward wasn’t this.

My life is open ended at the moment and I’m not sure how I feel about that. I hope I don’t float away and can find a solid point to which I can tether myself.

I don’t know hat tomorrow looks like. I’d really prefer just to close my eyes and skip this part.

I don’t know what will happen, how it will happen or what it will feel like. I don’t know my role, my position, my access.

The destination is frightful but the journey is one I am trying hard to savour.

Thoughts… MDMA for PTSD is a GOOD idea, Wikipedia. Why so negative??

**WARNING: Go get a drink and settle in, there are over 4000 words here. Hoping my edit down (from um, 11,000 lol) hasn’t lost the rhythm OR the point. Let me know if it has***

By ‘thoughts’. I actually mean that I rant my heart out, cover various seemingly unrelated tangents and you try to keep up. If it even half makes sense, then some of you like or share the post and if I’m super lucky (or offensive, or something), someone may actually write a reply as well.

PLEASE PLEASE PLEASE DO write a reply! If you have anything to share or say or ask on ANY post! I won’t judge you for different opinions, challenges to what I say etc. I won’t judge you if you’re feeling clueless. I won’t even judge if you can only manage 200 of the 4000 or so words here! I won’t judge you if you’re the author of the Wiki page, even… I’m judging the hell out of your words right now though!)

Ok…. begging over. Here’s what I accidentally did last night. I found some updated pages on Wikipedia, particularly one about MDMA, that paid mention to the Ecstasy for PTSD trials that I knew were happening. The result?

More reading the Wikipedia explanation (and citations) regarding the conclusions from that clinical research. Which just  leads to RAH stress – or maybe not stress but internal rage at incompetence and what feels more and more predictable every time it’s repeated: INJUSTICE. MORE stigma completely clouding COMMON SENSE. Conservative morality thinking it is somehow superior to progressive morality. IT IS NOT! It’s an undercurrent or subtext that taints the trials with negativity and it’s not fair.

ARGH.

Over this shit! Not over it like I’ll stop caring but over having to sit here reading outdated SHIT again because people – who should theoretically be quite smart – are frigging idiots.

I’ve copy/pasted this directly from (clickable —>) the Wikipedia page in question because I wish to address this piece specifically. Since my last visit, the tone of this page has changed (The wiki), the information feels more negatively presented than it used to. It’s probably subtle to anyone who is ‘not-me’, but it’s definitely ringing with the undertone of disapproval, an agenda, and very old-fashioned thinking; unfortunately a hallmark in psychiatry (which is quite dumb being a modern speciality) but anyway:

“A review of the safety and efficacy of MDMA as a treatment for various disorders, particularly PTSD, indicated that MDMA has therapeutic efficacy in some patients;[16] however, it emphasized that MDMA is not a safe medical treatment due to lasting neurotoxic and cognition impairing effects in humans.[16] The author noted that oxytocin and d-cycloserine are potentially safer co-drugs in PTSD treatment, albeit with limited evidence of efficacy.[16] This review and a second corroborating review by a different author both concluded that, because of MDMA’s demonstrated potential to cause lasting harm in humans (e.g., serotonergic neurotoxicity and persistent memory impairment), “considerably more research must be performed” on its efficacy in PTSD treatment to determine if the potential treatment benefits outweigh its potential to cause long-term harm to a patient.[15][16]

Ohhhh no you didn’t. Seriously, now?

#1 – STOP RUNNING SCARED AND RECOMMENDING INEFFECTIVE TREATMENT!

Honestly, it is better if you shut your ‘recommending’ pie hole and just limit the conclusion of the study to the facts. You know, what actually happened. Don’t say ‘this alternative thing MIGHT have fewer risks, but ultimately IT PROBABLY DOESN’T EVEN WORK’.

Cost-benefit analysis is not difficult, particularly in the case of PTSD. It takes a LOT of cost to outweigh almost any benefit you can give a patient or a patient can get. It’s hard to treat, it’s really hard to even minimise the symptoms, let alone manage them. Psychiatrists have for YEARS been throwing antidepressants (SSRIs) and anti-psychotics (UBER SSRIs, I call them) at PTSD sufferers because of any perceived minimal smidge of (probably placebo) change.

EVEN though PTSD heads down the dissociative disorders path. And SSRIs cause emotional detachment. Serotonin = dissociation/detachment, and increasing it means you get MORE detached. This is the point of an SSRI, by the way, for you to disconnect from your emotions in order to get past the issue making you depressed, after which time you can come off SSRIs, and as usual people think they are still unwell because removing them reconnects the feelings part (sometimes not for a while, and in less strength than before) and suddenly they are emotional and that’s a bit intense. If you go there – it’s normal. Understand it then just go with it 🙂

Antipsychotics cause sometimes REALLY serious dissociation, badly so, particularly in people with PTSD.

This is important to note as current common treatment, because they cite MDMA as potentially neurotoxic due to its effect of increasing serotonin levels. One reason not to use it is its ability to increase serotonin? Then WHY IS ANYONE giving SSRIs?

That means risk of serotonin syndrome which can be mild, or fatal, or anywhere in between. Well …I’m not sure serotonin levels are likely to be low in a PTSD sufferer, often enough – mostly I think – SSRI is over the top… let alone the antipsychotics!

Many PTSD sufferers have at some stage been wrongly diagosed with Bipolar disorder and I think I have realised why it is SO common, and SO alike from person to person, this diagnostic pathway.

I suspect almost all are diagnosed and then introduced to SSRIs and/or antipsychotics, OR they are upgraded from straight depression to bipolar soon after beginning initial SSRI treatment…

I think the link is that there are a TON of people with PTSD having misdiagnosed episodes of serotonin syndrome labelled as hypomania or dysphoric mania – features of Bipolar type 2. 

For all the worrying about this serotonin syndrome, doctors and psychiatrists are TERRIBLE at diagnosing it… So patients go back and they are aggravated, edgy, emotionally disconnected from the world and their loved ones. Aggressive, cynical, ragey sometimes….

This is misdiagnosed as a manic episode (or hypomania – mild mania) and tada… a Bipolar tag – increase SSRI, add antipsychotic (with often catastrophic results). How many people have had serotonin syndrome only to be diagnosed with bipolar and fed MORE serotonin inducing, dopamine dropping drugs, by ADDING an antipsychotic to the SSRI?!

HOW DOES THAT NOT LOOK WRONG AND NEGLIGENT AND OBVIOUS TO EVERYONE?!

Compare the Pair (well, three actually) – ALL doctors prescribing SSRIs, having changed nothing but serotonin in the brain, should be on guard, vigilant and aware, as this should be obvious, and ALWAYS ruled out FIRST:

Serotonin Syndrome Symptoms:

The symptoms are often described as a clinical triad of abnormalities:

Hypomania:

Dysphoric (or ‘bad’/negative) Mania:

According to the MMDT, increased energy and some form of anger, from irritability to full blown rage, are the most common symptoms of dysphoric mania. Symptoms may also include auditory hallucinations, confusion, insomniapersecutory delusions, racing thoughts, restlessness, and suicidal ideation.

THEY ARE SO SIMILAR. Except one is caused almost immediately after consuming SSRI, one is not. That is a REALLY EASY DIFFERENTIAL! One is saying NO NO NO to serotonin, one is not. Now, on reporting sudden development within 20-30 minutes of ingesting antidepressants…. ugh it should be obvious every time and yet they miss it almost every time.

I’d personally go so far as to say SSRIs and antipsychotics are FAR MORE dangerous for PTSD in general than MDMA in the context of the trials.

It is gross negligence to give SSRIs to someone with too much serotonin – so I’m unsure why they get away with not even watching for symptoms!

***Side note to the nay-sayers who think I’m going off about a non-existent slight, one that I’m seeing non-objectively and being over emotional about; I know, I know. A WHOLE bunch of you are reading that excerpt from Wikipedia and just going, what? It sounds cautious, impartial, objective. Scientific and stuff. I’m used to the majority starting from a place of thinking I’m a) paranoid b) insane c) stupid d) all of the above. So, Ok. I’ll see if I can win you over to sense the subtle negativity Shall we discuss use in PTSD vs use in community, really quick?

Yes we shall 🙂

Firstly; This study did NOT NOT NOT give patients MDMA for any kind of prolonged period. It also wasn’t an impure, recreational level dose, one weekend a month for their entire youth. It was one to a few doses.

It was a clean, safe DOSE in a medically supervised environment as it would be if clinically available (not some random pill with a cute picture that the Psychiatrist picked up on the corner!).

It was effective – often enough in ONE SINGLE SESSION with NO further dosing required! NO increased risk of addiction or misuse in the community at follow up! Sustained improvement in symptoms. Ability to face their trauma! LIKE HELLO??

AND… this ‘information’ used to claim the risks outweigh the benefits, that claim it is NOT safe, is using dodgy, uncomparable data.

Their data can ONLY use random, street quality drugs (due to worldwide prohibition) – MAJOR FUCKING SCIENTIFIC FLAW IN YOUR CONTROL THERE …#1. Additionally the ONLY data on the frequency of use that results in ANY of the side effects or resulting brain changes (and doesn’t factor neuroplasticity in either) is listed as LIFETIME USAGE! That’s NOT ONE DOSE!

It’s NOT SAFE FOR PREGNANT WOMEN! Oh shit, get the ibuprofen off the shelves and into the drug dealer’s hands, people, because for 6 of 9 months IT ISN’T FUCKING SAFE FOR THEM EITHER.

Methotrexate (a chemotherapy drug, often used in autoimmune disorders too) – it’s MAJOR WAY WAY bad for pregnancy. Firstly, it causes abortion, and if you avoid that, then not only does it cause deformity/damage if the pregnant woman takes it, but if a MAN GETS SOMEONE PREGNANT up to 3 full months after he stops taking it, the odds are ridiculously high that you’ll have a physically or neurologically deformed, disabled baby – if it isn’t miscarried due to being unable to even survive as a foetus, all advise is either not to, or to abort in case of accident. They even recommend VASECTOMY in sexually active men who are finished having kids who go on this stuff. It’s THAT BAD.

But oooh MDMA isn’t safe in pregnancy? SOOOO WHAT? That’s what contraindications are for. Ban grapefruit because it negates your blood pressure medicine… oh no, common sense means we contraindicate grapefruit. Provide info to the patient not to eat it. Don’t prescribe something if patient is regular consumer of that fruit, or counsel them to give it up. That reason is completely irrelevant to the value in PTSD. If you’re curious, the cited study says that in particular MDMA (or street-level ecstasy in reality) isn’t a good idea if you’re pregnant as it can create psychomotor deficits in the subsequent child. Study doesn’t say frequency/risk level which is poor, and as the study uses the term deficits rather than retardation/impairment or motormental retardation terms actual incidences are probably more often than not sub-clinical presentations rather than severe enough to be labelled (other than perhaps very rarely) as that condition. Google it if you want to know more, it’s normal activities of thought and action are hard and slow to varying levels, similar to the inertia of a deep depressive phase. So that’s what you risk.

Anyway, more mentions of recreational MDMA (small to zero quantity of actual MDMA included according to general media, specific quantity in study not measured and unable to predict, but hey who cares about science 101 – controls, variables, correlated is not causal and oh yeah, COMPARE APPLES WITH APPLES IDIOTS!)

Everyone who looks at long-term use of recreation ecstasy has similar if not the same results. 

Results that are 10000000000000000000000% UNRELATED AND IRRELEVANT TO MDMA AS TREATMENT FOR PTSD.

That is the study detail, being cited in the author’s discrediting of the trial. Bastard.

Science 101 pt. 2 – YOU CAN ONLY HAVE ONE VARIABLE AT A TIME, PER EXPERIMENT. One. Or you’re invalidated.

MDMA written off as AWESOMELY POSITIVELY EXCITING for PTSD because, drug are bad m’kay. My psychiatric lecturer said so in 1981, or something.

Getting doctors in any field, but ESPECIALLY PSYCHIATRISTS, to even LOOK at new information is like trying to convince the religious zealot of atheism! And that’s not science. Medicine should NOT be so difficult to change.

Not OK.  SO not ok! There is the niche field of experimental psychiatry/psychology – exactly where this trial came from – but it is small, looked upon with suspicion and the ‘going opinion’ is at worst that they are 100% full of crap, all of the time, to at very best that whatever they experiment with now, might ( – in the words of fictitious 50yo Psychiatrist professor smith, ‘though highly unlikely since it’d mean the old Prof here was wrong, and that’s not going to be the case, har har mumble something that signifies insecurity, toddling off – sorry, I see examples of what I’m describing as visual scenes sometimes, just sharing lol)

… today’s experimental stuff, might end up moving into evidence based practise in 20 or so years. MAYBE. At least by those young maverick kids who are just qualifying their speciality. And only after today’s information itself is dated and old fashioned. Psychiatry will never catch up to modernity if it continues that way.

So, one of few drugs (that I know of) with worldwide UN-based prohibition, MDMA isn’t an easy one to get past an ethics committee. You need approval from two separate ones operating like a board, usually attached to a university. And whom are usually far from ethical in their operation and come with vested interests; if nothing else. ‘Let me use illegal drugs on fucked up, potentially dangerous war veterans, and see what happens’, doesn’t scream ‘ethical’. Especially if you don’t know too much about MDMA (ethics committees have at least one community member on the panel, not a group of people all well-versed in your special area so you may have no one who understands neurology, for example).

Particularly in the US where veterans are both admired/glorified AND absolutely muddied through the gutter, often by the same people or associations (or governments). It DID get approved though there. Here in Australia people go FUCK OFF AS IF WE WOULD SAY YES! basically immediately, to every version of the proposal. Because, Anna Wood, people! (Who actually may well have had a perfectly safe street tablet of supposed ecstasy, and then drank so much water she drowned from the inside – as is quite often how people on ecstasy actually die – that or the drug is NOT the drug at all, it may be another drug sold under the wrong name (still called ecstasy in the paper, still put down as an ecstasy death), it may be because you’ve just taken 3 tablets of rat-sack, ant rid and arsenic YOU IDIOT… Those are street-drug risks, every day. But none of those are overdoses of MDMA and none of those are due to fatal levels of MDMA in the blood.

***Australia MAY have made progress since I was last involved in research details, I have half a memory of ONE approval happening after I stopped following. It may have gotten in, if so, good, the next step however is to trial NON-COMBAT PTSD because if it isn’t, and its then submitted for release/use, it’ll get clinically limited to Vets, OR it’ll be disallowed entirely for being too narrowly effective or something***

We feed people morphine, methadone, endone, valium, stimulants etc etc as required on long term schedules, some of those in some places with limited supervision, care or consideration by medical professionals as to the risk/benefit of long term, short term or otherwise use. And you’re having a panic attack about MDMA….

I know soooooooo many people who are physically dependent on opiate pain relief now. People who have to take Endone (or OxyContin), Codeine/Panadeine Forte here in AU, Nurofen Plus, Morphine… how many people live out their days never beating a heroin addiction because the government maintains their depedence via Methadone? How many people (before recent tightening of rules) had valium for shift work, flying, the dentist and ANY uncomfortable, or mildly anxiety-producing event? SSRIs are handed out like bloody LOLLIES! For the concern mentioned about MDMA being Serotonergic, and the risk of serotonin syndrom… try someone who doesn’t need any more of the stuff being not only given SSRIs and having it increased, but when it fails to work the dose just keeps going UP. Now that, very poor practise I might add – yet it is standard Australian treatment,

Moving on. So what is there now? Well, almost completely, current drug treatment regimes for mental illness are almost entirely POOR quality for PTSD, is the point illustrated above. There are some ‘out of fashion’ options, some available and some no longer actually even accessible, that are actually FAR more useful, offer more of a benefit and may actually ease at least some of the experience. These are NOT SSRIs (or anti-psychotics). But finding a doctor prepared to discuss them with you, allow you to act as an advocate and be involved in your own health management, believe you know what you’re talking about and take you seriously..

That’s really hard. It’s so hard it can be almost impossible if not terribly straightforward to even get a PTSD diagnosis, you may be told you have bipolar, ocd, depression, a personality disorder, glandular fever. Anxiety disorders. And so on. It’s easy to be diagnosed with basically EVERY OTHER MENTAL ILLNESS common in clinical settings before ANYONE thinks to check PTSD. Unless you’re ex-military, it could be missed for years, by many.

So, you finally GET the OMG IT ALL MAKES SENSE lightbulb moment, where you discover the explanation is PTSD. You have a cause, now you can do something about it. This is good news.

so… what shows promise you ask? Oh! MDMA!

It’s physically exhausting, debilitating, confusing and messy alongside psychological effects, when you live with PTSD. You want to minimise or remove ANY bits of that struggle that you possibly can. Flashbacks are scary. The original trauma is so FUCKING TERRIFYING you can’t even think a thing about it let alone discuss it.

MDMA lets you be OK with looking. It stops the fear, it creates an emotional environment where you’re self-loving, self-forgiving and kind on yourself. You’re not scared or panicked so you can go over it, more objectively. You can see it for what it was, and create a moment that takes its power away. MDMA means you’re not scared, which means you look with eyes wide open at your trauma and you come away from that moment almost unscathed. You’re FREE of the grip of the trauma.

HELLO THIS IS CURE LEVEL STUFF!!

Best case results:

One session. One dose. Work through of trauma. Acceptance and empathy for self. Follow up at one week, no desire for MDMA, acceptance of trauma intact. Follow up at 3 months, No desire (or attempts to find) to use MDMA, acceptance of trauma, PTSD symptoms abated. In ALL follow ups not only is there no desire for recreational MDMA, but there is also NO desire for any other drugs – it doesn’t suddenly open that (mythical-ish) ‘drug gateway’ and mean you use drugs for all your dramas now.

And so on. One dose, dig into the painful bits, feel the love and accept what is, then go live your life. No scratching at inner arms, desperate for MDMA. Not a sudden drug addict.

NO NO NO NO NO! THIS CANNOT BE LOST, BURIED or IGNORED.

Scientific denial is a matter for the clergy. Not the medical profession. You cannot deny that which you don’t know.

More research? DEFINITELY. It’s a hard trial to get past ethics committees though. BIAS needs to be dealt with first.

MDMA is not inherently worse than ANY other medication, whether it has a legal status, reputation or seems ‘scary’.

Tomatoes were fatally poisonous – their reputation said, their colour scared people into thinking. Wrong.

Paracetomol (Acetaminophen in the USA), the one ‘safe’ drug everyone knows – is able to KILL (and has done) a child who takes just a few adult tablets. In fact it can be incredibly toxic and shut down the liver completely and irreversably even in adults. It is pushed as safe as water, perfect for pregnant women, available anywhere and everywhere in uncontrolled quantities. IT CAN KILL YOU and you may not need even close to the whole box.

Heroin is in hospitals, identical but under a ‘compound’ name. Pregnant women may lose their baby if they have used heroin while pregnant. Pregnant women who go to hospital to give birth are given heroin as pain relief in labour.

WHat people think they know about drugs is rarely the full story and we rely on professionals to tell us. Your midwife won’t tell you she’s giving you a dose of heroin. Your pharmacist won’t put a black box warning on the panadol, and the old wive’s tale about tomatoes has long since been forgotten.

That study had massive promise, was having really interesting and important results for a mental illness that is VERY HARD TO TREAT, and has a very high mortality rate – FOR THE VICTIM AND FOR OTHER PEOPLE – ‘going postal’ is externally acted on PTSD!

It is often made worse by non-forward thinking, progressive medical staff, and years of ‘just because’ evidence from poor quality studies, research that didn’t have the information we do now, awareness of the brain and its functioning, a LOT has happened in neurological discovery and understanding in the last 10 years. JUST 10 YEARS… huge advancements. Doctors relying on research from 11 years ago may as well have ancient medical texts as their guide.

This was something, IS something. And as with most other neurological/psychological/pharmacological rants I have here, I’m angry it’s probably going to get swept under the carpet.

That study had massive promise, was having really interesting and important results for a mental illness that is VERY HARD TO TREAT, and has a very high mortality rate – FOR THE VICTIM AND FOR OTHER PEOPLE – ‘going postal’ is externally acted on PTSD!

Ineffective legal therapy for mental illness is repeatedly the cause for many drug abusers to start taking illicit drugs. To self-medicate. With half the information, none of the legal assistance what makes me sad is knowing the following WILL occur, somewhere. Don’t let it be you.

‘Mr. random man with PTSD’ desperate for some kind of help, goes to that street corner and buys that pill with a cute picture on it, that the clinical trials didn’t want. The one that ‘supposedly’ contains MDMA, at least they call it Ecstasy. And this Man will expect it to get ‘fixed’, without any professional support, supervision or guidance. IF he survives he won’t necessarily have adequate MDMA levels to find benefit. If he does, he may not have a clue what to do to actually treat the PTSD, and go clubbing or something instead (aka, waste it). If he does know, then he may be led through by someone inappropriate………. or he does it alone, and hopes it doesn’t wear off half way through.

Besides, remember or learn about the downside (there is always one, as much as there is always a positive):

Terrible Tuesday. With higher levels of neurotransmitters, as the drug wears off the chemical depletes. Having no measured or minimum effective dose (aka low side effect profile), and no supervision he crashes, bottoms out his neurotransmitters, brain empty, and all without knowing it is normal to experience this after the drug. Usually, it is one day, and it is basically a ‘hangover’ that is empathogenic/emotional (in the opposite way to the drug effect, so flat/dead/dull/depressed etc) due to the effect of the drug, Unfortunately, our taking it on himself, PTSD sufferer denied the rihgt to legally access MDMA treatment, doesn’t KNOW it is still OK, he’s SUPPOSED to feel dead after a weekend dose of recreational, unidentified ecstasy. No…he thinks he’s now BROKEN, PTSD has finally taken every last drop of anything from him, and he commits suicide.

That’s what I see happening – a worst case scenario of possibilities, of course – thanks to Mr. it’s too hard, drugs are bad m’kay author and people like him – most of the psychiatric ‘experts’, that means. I can’t help but feel and feel hard for people – hypothetical people, the ones I know do exist but have never met, or even seen. I feel concerned for those people. I feel so so sad for people with PTSD who lose if this gets lost. I feel for the people who did the research. I feel for the professionals conducting it, who KNOW they have an answer.

I feel for everyone who thinks all they have is an SSRI. Who feels their only option is to numb out on Zyprexa, antipsychotic. Who uses heroin to escape the pain – heroin users almost always have trauma, something like 90% at least. That’s better than a one-time dose of MDMA, right? A life of heroin until eventual overdose? THAT is irresponsible. ANd it’s a parth that is as clear as day if you’re prepared to look at it.

God you people… COMMON SENSE is all you need to critically assess the concept, effect, cause and situation with drugs and their users, cost/benefit, risk assessments, harm reduction, adequate control, safety, addiction, and LOGIC!!!!!!

LOGIC!!! In MEDICINE…. I should not be begging on my blog for that, it’s a frigging science. But I am. Again.