There is a cult of ignorance in the United States, and there always has been. The strain of anti-intellectualism has been a constant thread winding its way through our political and cultural life, nurtured by the false notion that democracy means that “my ignorance is just as good as your knowledge.” Isaac Asimov, 1980

More scientist than sci-fi novelist, the Biochemistry Prof at Boston Med School was a keen observer of humanity. Pres-elect Trump is a man foretold by this futurist, emerging from an ideas vacumn borne out of presentation pizazz. In life’s great reality show, it’s hardly surprising that the winner of the popularity contest would be another actor rather than an intellectual. Nonsensical lies, regardless whether delivered with aplomb or hysteria, can be convincing – and internet memes circulate too fast for any factual repudiation, particularly if response is limited to 140 characters on social media.

Cardiologist and Dean of Harvard Med School from 1935-’49 Dr Burwell advised new students: “Half of what we are going to teach you is wrong, and half of it is right. Our problem is that we don’t know which half is which.” Facts must constantly be re-evaluated in light of new understanding, but that doesn’t happen. Just as the consumer swallows whatever their doctor says, the faculty implicitly trusts their academics. Their faith isn’t tested by apparent misconduct – because it’s not placed in the person, but rather in the institution of medicine. Which intersects with politics.

 

twitter.com/DanielAndrewsMP/status/751641006144036865

twitter.com/DanielAndrewsMP/status/751641006144036865

Glib words, easily misinterpreted. The Victorian Premier was commenting on a maverick colleague of Dankenstein, and not necessarily everyone who gains financial advantage from their chosen career in healthcare. But there’s underlying truth. Commercial influence on treatment decisions isn’t just a risk due to the ‘bad apples‘ experimenting recklessly. Universities contribute to global evidence bases regardless of their fictional truth’s lack of veracity. No better example is given than the UNSW’s sacking of whistleblower Dr Ying Morgan, and exoneration of Prof Levon Khachigian – despite inarguable guilt. Photoshop is a new inclusion to the researcher’s armamentarium, equally as valid as ‘Adjusted for’. Perhaps the governance applied to physicians in practice can correct for this corruption of the evidence base? The Medical Board’s public listings of judgements are over 12 months delayed after decision (and an indeterminate time after the complaint), and any miscreants are protected by anonymity. Sadly, no.

Number 1 in scrips written is Lipitor, for obvious reasons (nothing to do with actually working tho’ – improved life expectancy from statin usage in an ideal, ie recruited into the trial, population is just 4 days). Our number 1 expenditure on medications, running at $3bn p.a., are the Hep C drugs – priced exorbitantly because they work. This could be considered extortion, and sets dangerous precedents. The up and coming big tickets on the PBS are the BioDiseaseModifyingAntiRheumaticDrugs, the _mab immunosuppressants (Enbrel fails to follow the _mab suffix naming convention). The early phase (I & II) drug trial centre Nucleus Network at the Alfred Hospital is fast expanding, largely due to rapid developments of these expensive, specifically targeted bio-agents. By the time efficacy is proven in a phIII Clinical Trial, and it will be proven, the drugs budget will be under assault.

There’s inadequate reports from phIV comparisons of treatment options among the general community, although 10 registries across Europe and the US have been collecting _mab outcome data for half a dozen years. One recent example published is that an incremental increase of 4 Quality-Adjusted Life Years results in a net saving to the healthcare bill with adalimumab, hence it’s recommended for younger patients. Though slowly, the picture is becoming clearer.

If only the politicians refrained from unsupervised social media usage, and also didn’t mistakenly boast of initiatives to supply psychotropic drugs to kiddies thus: “Last month, I visited a secret facility. I can’t tell you where it is, but I can tell you what’s going on there. It’s where we’re growing Victoria’s first crop of medicinal cannabis – a crop that will improve the lives of hundreds upon hundreds of kids suffering from severe epilepsy.

Premier Andrews confused cannabis with cannabidiol.

Premier Andrews confused cannabis with cannabidiol (source:FaceBook).

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This hipster showed us infinitely cool back in 1848, which is totally 0K 😉

Science geek jokes aside *, learning has three aspects. The tuition, the practise, and the assessment. Measurement is not simply to verify competence, but it’s vital to correcting and enhancing understanding.

hipsterMetrics
Athletes seeking peak performance are being joined by all and sundry seeking motivation for exercise, in usage of metrics. Simple weight and repetitions, or distance and times logged, or biometrics such as heart rate (to keep inside a safe envelope of effort). Recently heartrate variability (HRV) sensing has been adopted to inform the decision of whether to train today. Or sleep in. To explain: fight & flight is from the sympathetic nervous system causing endocrine outputs such as adrenalin (epinephrine). It’s a survival response arising in the reptilian depths of our brain, around 6 times faster than rational thought process in the cortex. DON’T STEP ON THAT SNAKE ………………………………………………… no, wait up – it’s just a stick. Heightened arousal has already set off neuroransmitter and hormone cascades however. Chemical affect upon the heart ticker has a delay in effecting increase, which means that the beat-to-beat changes are subtle but steady. Rest & digest parasympathetic ying balances autonomic control of yang‘s panic, and is entirely effected by the vagus nerve. This electrical moderation of rate took time to formulate, but works near instantaneously. This means that beat-beat (R-R, or NN) intervals change markedly. Reporting on R-R through an HRV check is being suggested by coaches, to ensure the exercise activities are undertaken with the right mindset, mindfully.

HRV training uses biofeedback to display this measure of autonomic balance (or Vagal tone) in realtime, and seeks to amplify your increases in rate with the in-breath – a natural observation known as Respiratory Sinus Arrhythmia. Gevirtz and Lehrer provide many journal articles and video explanations, and a few months ago ‘Treating the mind to improve the heart‘ appeared in Frontiers in Psychology journal announcing studies underway at a US Veteran’s Affairs medical centre. The simplicity of the measure means it’s already quantified, thus a useful assessment. Neurofeedback training adds a level of complexity, by selecting EEG leads on the scalp to quantify, and visually report focus in regions of the brain responsible for control – such as sensorimotor for chronic pain. The history of training by reward for helpful brainwaves goes back to Sherman’s meditating cats in ’65. This is the second aspect, a practise.

Finally, the didactic beginning: tuition. Educational courses in mindfulness abound, this is a no-brainer!

Practicalities. HRV is supported by many cheststraps which very accurately measure the electrical R-R interval, and upload this to smartphone apps capable of Bluetooth LE e.g. Polar H7 and Zephyr HxM. Rather than BLE, Garmin uses Ant+ wireless as does 60Beat – SweetBeat for iOS interfaces on both these protocols. iThlete have a simple sensor to detect blood pulsing in the finger,  in a medical rather than sports context and this has been validated against the gold standard of ECG as a tool for developing countries.

* Zero degrees Kelvin (0°K) is very cold – the theoretical absolute minimum.

New Romantics FB3 actually wrote this about Thatcher-era Britain so the soundtrack doesn’t warrant linking, but the title suffices to illustrate a theme. In the mid-60s Canadian cystic fibrosis patients were entered onto a tracking registry, and other countries followed suit. The US foundation extracted outcome reports and used it to rank treatment centers, and the UK NHS mandates recording of all clinic attendance thus facilitating cross-country reporting. The best practice evidence revealed in this way is certainly less biased than any Cochrane review, since it’s also completely non-selective.
A more commercially oriented registry has been built at the for-profit PLM described here a few months ago. An FAQ encourages sufferers to ‘donate their data’ towards finding a cure, and this raises the intriguing idea of their vested interest overriding concerns about case confidentiality.

It’s not such a new idea. Grand rounds are a tradition in teaching hospitals, and case studies or series present de-identified but intimate details for elucidation of a condition. They’re win-win situations. Research institutions can also bend privacy rules to their own means – such as through ‘opt-off’ implied consent. Registries.org.au shows the benefit of, and reliance upon full capture of clinical care outcomes for quality monitoring.
fb3
On the other hand, requests to the Director of Grants at NHMRC for the identities of reviewers approving research funding applications (in order to scrutinize for conflicts-of-interest) are denied – using as disclaimer “confidentiality of applications and that (sic) all personal information is dealt with in accordance with our obligations under the Privacy Act”. Their oxymoronic Principles of Peer Review of articles 2 “All stages of peer review are transparent” and 6 “Participants respect that confidentiality is important to the fairness and robustness of peer review” contradiction is exposed when a falsified report is challenged, posted in detail here. For anyone wishing to draw on a correlation between mental health and chronic pain, for all eternity, that study can be cited. The artificial construct of epidemic mental illness results in inadequate treatment available to those genuinely suffering, and a pill-popping panacea instead of fruitful therapy.

Similarly secret, we are invariably blinded to identities of the peers for a peer-reviewed journal. The commercial imperatives of publishing have been exposed by luminaries such as the BMJ editor, who, following a quarter of a century as chief executive wrote in open-source PLoS: ‘Medical Journals Are an Extension of the Marketing Arm of Pharmaceutical Companies’. Studies on the peer review process also show this form of governance is a fallacy. It seems to have been lost that the purpose of research is to improve outcomes, and that the data belongs to the patient rather than their drug dealer. Ownership has underpinned the ethical guideline of ‘beneficence’ instituted after Nuremberg, and accountability was promised by the institution when informed consent is granted by study participants.  That consent can’t be withdrawn posthumously if it doesn’t work out as expected.
Militant united voices can redress the present disempowered situation, only tolerated out of the individual patient’s desperation to obtain effective treatment for which they’re handsomely rewarding their service provider. That’s my dream. The reality is that a petition to draw the attention of our Health Minister, raised on the forum representing a (conservatively) estimated 600,000 fibromites managed only a few thousand signatures. As to whether meekness, or ignorance of commercially driven bias is to blame I’d suggest the former. Even if ‘doctor’ no longer translates from the Latin ‘teacher’, their authority is nonetheless unassailable.

A soundtrack may help to paint this picture – the link opens in another tab. Turn the volume way to the right. Dave Wayman’s songwriting for Shannon Bourne used by permission
What’s a Little Pain? I’m quite unable to describe the impact of suffering from fibromyalgia, but hope that the noise in your head will help whilst trying to educate carers about hypersensitivity.
It isn’t so easy to give rheumatology specialists an insight, due to their being the fount of all knowledge. Prof Fred Wolfe removed the following unabridged text from a posting to his blog on the grounds that “We will not publish insulting or crude comments”. Despite the topic being Empathy!
I’m so mad right now. Steaming, boiling, ranting, raving, wanting to kick, hit or punch something mad and I’m not apologising for it – Don’t read it if you don’t wanna know, I don’t give a damn.
My GP is moving after Christmas, so I guess since he thought it’s probably his last visit with me, why not tell me how he really feels about me.
Apparently in all his wisdom of treating me for one year of my Fibro journey, he felt justified to make the comment that I rely too much on medicine to fix the problems I have. That I don’t try other things, I just reach for medication and see if I can increase the dose to make myself feel better and that’s whats led me to where I am now. That he has done his best to try and get me off the medications and stop me relying on them but its my choice and as such I have to accept the side effects.
Give him one week. One god damned week where he doesn’t understand his body, where he has to try a hundred homeopathic remedies that all fail and leave him worse than before, where he reads so much about his condition he can’t think of anything else. Where his family don’t understand the strange things he does any more and laugh at him because he swears they will work, one day. Where a remedy works on day one, but doesn’t on day two for the very same problem. Where he has to throw thousands of his own money – a gvt pension – on a swing and a prayer because he’s so desperate for something to work. Where he has to turn to his GP to prescribe medication because the GP admittedly knows very little about his condition and can not help any other way. Where the illness makes him feel like a different person and the medication makes him feel worse in 20 other areas but fixes the one big ailment flaring that week. Where he can not socialise with anyone because his friends don’t understand and don’t want to – he can’t drink alcohol any more, he can’t party with them, can’t play sport, can’t join social clubs because of the exposure to noise, lights, sensation of any kind. Where he has to walk naked around the house for 5 days in a row because fabric is too painful to wear, sit on or lay on.
Damn him for thinking he knows anything about my life just because he sees me once a month. I don’t ask my physio for scripts because its not his job!! I don’t ask my GP to Dry Needle me cos it’s not his job!! So many things go wrong and there is so much to fit into an appointment every month, why would I tell him all the things I tried that didn’t work?? I’m there as a last resort, not a drive through takeaway. I’m there asking him for help with medication because that’s what he’s trained in – he has told me he knows little about Fibro, treats his share of patients with it, tries to keep up with the latest info, thats it. If it was 7 years ago and he was my naturopath, I probably wouldn’t ask him about diagnoses criteria for Sjorgens. If it was 5 years ago and he was my acupuncturist, I wouldn’t ask him to adjust my back. It’s now and he is my GP – isn’t it reasonable that I ask him for medication and not exercises for my Vertigo??
To even imply he tried to get me off medication is a joke – he said in my first appointment, as all dr’s do when they freak out at my medications, “oh you can’t have all these, we’ll have to wean you off some of these” and proceeded to put me on a new medication that very appointment!!
The crappy thing is that I ruminate heavily and I know that because of my mental health problems, these comments will stay with me a long time and the anger will turn into much more self destructive emotions.
However, I am very proud that I ignored him in the moment and continued on with the appointment as if he hadn’t just struck a red hot poker into the deep core of my being and planted a deep seed of paranoia and mistrust in me about what Dr’s are really thinking and if I will get the same attitude from everyone on my journey.

Didn’t ask for much. Apart from the linked letter, didn’t get anything. Perhaps I give too much background on mis-management of fibromyalgia by attaching evidence of conflicts of interest? Indifferent reply from the Hon Peter Dutton, Minister for Health …….care? (click to link).

My memo follows:

May 12th is marked as International Fibromyalgia Awareness day, shared with the ME/CFS campaigns. Fibro unfortunately has no national support group, nor any charitable foundation despite affecting between 6-800,000 Australians (predominately women). There are no studies underway in this country, nor is the prevalence known unless by extrapolation from overseas. On the other hand, Griffith University’s NCNED is committed to investigation of Chronic Fatigue. The disparity between the syndromes results from CFS being seen as attributable to a virus, thus specialist treatment is by referral to an immunologist. Whereas the obvious presentation of fibro being musculoskeletal pain resulted in ‘ownership’ by rheumatologists. Unfortunately it is disowned as being their problem – Profs Buchbinder and Roberts-Thomson being amongst those who deny that the disease belongs on the Australian Rheumatologists Association Database or of there being any need for a fibromyalgia register.

As I highlight to the Director of Monash’s Centre for Ethics in Medicine below, such indifference has resulted in failure to investigate the appropriateness of treatments. Pharma is frequently accused of commercial interest overriding patient welfare but  it’s obvious that this situation is unique in extending to misconduct – further explained at http://americannewsreport.com/nationalpainreport/drugs-fibromyalgia-good-8823155.html . The ‘Bad Medicine’ of greatest concern is pregabalin, marketed by Pfizer as Lyrica. In meta-analysis the NumberNeededtoTreat consistently exceeds the NumberNeededtoHarm, but research sponsorship suppresses any concern for the fact that this medication does more harm than good for fibromyalgia. And as the attached response by the office of Senator the Hon Fiona Nash advises, there’s no impetus to improve governance in research. I respectfully ask that consideration be given to a statement for May 12th which will provide encouragement to sufferers of this debilitating condition.

Yours sincerely, Geoff Kirwood