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).

Positivity – soon to be classified as an illness?

Radio presenter and psychiatrist Assoc Prof Steve Ellen has informed listeners that the American Pschological Association is considering inclusion of Excitable Optimism (EO) as a mental disorder. The Diagnostic & Statistical Manual (DSM) draft has been circulated, as was the case with DSM-5, and evaluation will include prevalence and burden assessments. Steve said “My wife finds my intolerable cheerfulness to be just that, but if the proposed change in DSM-6 goes ahead then it’ll validate my illness, and remove that stigma from other sufferers”. Steve’s upbeat persona might seem invaluable in his role as a director at Peter MacCallum Cancer Centre, but its intrusiveness into personal relationships led him to study the condition through Monash Alfred Pschiatry research centre.

Steve runs a selfie-help group

Steve runs a selfie-help group

A formal diagnosis of EO will require more than just positivity, the discriminant being a manic aspect of excitement on top of delusional belief in things getting better. EO is mooted to join ADHD in the standalone category formed in DSM-5, having both cognitive and behavioural domains (Coghill & Seth, 2011). The plan has already been bookmarked in the International Classification of Disease (ICD) update at ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/2017/ where ADHD is renamed HyperKinetic Disease, and sits alongside HyperAffective Disorder (HAD) – an extended definition of the previous ICD coding for Death & Injury Resulting from Terrorism.

These examples are the first application of ideas about endogenous disease affecting others globally, although the association between EO and ADHD isn’t new, indeed being well documented. What isn’t known, but is being keenly investigated, is the contribution of nature or nurture in positivity. “Shared environmental influences on low extreme ADHD traits may reflect passive gene-environment correlation, which arises because parents provide environments as well as passing on genes”, said behavioural geneticist Dr Corina Greven from the Dept of Cognitive Neuroscience at Radboud University.

The proposal reflects growing divisions within Psychology due to the increased adoption of Eastern Buddhist traditions into therapy, most obviously arising from mindfulness in treating disorders. “Positive Psychology is plagued with problems of confusing directionality, and submerged in a lack of rigorous science.” writes psychologist Michael Booth from the Science-Based Medicine organisation. “Mindfulness introduces many things that cannot be refuted or invalidated, and can be used as an ad hominem against an individual. For example: you aren’t meditating correctly, which is why we did not obtain the promised result.”

Results are much clearer in clinical trials. Of the 16 persons reporting persistent high-intensity backpain in a two-year community study, negativity was strongly associated. Positivity affect from family and peers was also associated, but not significantly so. “This is a statistical limitation of the small numbers of participants, with a tripling of study size the p value of 0.08 would have decreased and achieved significance”, author Assoc Prof Anita Wluka advised. “Larger investigations are warranted, to show that pathological optimists are literally a pain in the backside”. The Monash team already has an application in for funding to trial amitriptyline in households with a chronic pain patient where an EO sufferer also resides. Medicating persons other than the patient is controversial, with few precedents being available. Director of NHMRC grants, Saraid Billliards declined to comment, due to the matter still being under review. Further details are available on the clinical trials registry under ref ACTRN12612000131853.

In the immediate term if you, or a person you know has been affected by HAD, the Australian Government has a support line: 1800 123 400

 

Mammon

Healthy participants volunteering to receive first-in-human safety trials of a drug are well compensated, and receive round the clock monitoring. But sick persons opting into an experimental program pay to exploit a legal loophole, and there’s no oversight. This truly exemplifies survival of the fittest.

Drugs are priced by preparedness to pay.

Drugs are priced by preparedness to pay.

A doctor, accused of administering banned substance Thymosin beta 4 (TB4) to footballers, was exonerated by the Medical Board in June of trying out etanercept on stroke patients. This genetically-engineered bioagent is the subject of an earlier blog , and is a last resort in arthritis. It trades improved Quality of Life, for reduced Quantity. This is a moral decision, but one informed by solid clinical evidence of the risks vs benefits of blocking autoimmune responses. The AHPRA letter declares that his “… decision to use etanercept was based on high-quality evidence. All patients were informed before attending and fully understood the position in Australia…”,  and ends with an apology for the stress of their investigation. The doctor wrote in his defence that “Griffith Uni was in the process of doing clinical trials with the drug“. Uhh, no. Dr Rick Williams has approval only for his trial protocol, but insufficient funding to begin. This footage from 60Minutes is the only ‘proof’ of efficacy:

Clinical notes show that patients were informed that this would cost $6k in Florida. So a vulnerable person was injected on the basis of pricepoint. Some had also signed off on a 29 point consent form, which includes unspecified “immune stimulating injections”. I have no idea how such conduct can be condoned, but it is indeed compliant with the Good Medical Practice Code-of-Conduct Sn2.2.6. Providing treatment options based on the best available information. With no definition of what constitutes an evidence base, misconduct is unfettered. Snake-oil salesman Dr Tobinick had been challenged to support a clinical trial, but sued detractors instead – a case thrown out by the US District Court 30 Sept 2015.

The doctor presented at a Florida conference in 2015: “Thymosin beta-4 affects immune responses and is integral to formation of growth of normal tissue when damage has occurred rather than the chaotic formation of scar tissue that normally happens.” and his Aust website states: “Peptides such as AOD 9604, Thymosin beta-4 and Follistatin are peptides … Agewell is a world leader in the use of these medications.” The TGA site is more enlightening: “These substances are currently used illicitly to enhance sporting performance and more broadly across the community often for body building and image enhancement purposes…

  • No form of Thymosin Beta 4 is yet approved for human therapeutic use anywhere in the world.
  • The medications are considered experimental in humans, with potential side effects including carcinogenicity and cardiovascular problems.”
Injecting room at HyperMed

Compounded concoction in the injecting room at HyperMed

But they’re still legal, with the doctor’s scrip. Which doesn’t even require a consultation, as an order from Peptide Clinics demonstrates. Fairfax’s sports journalist Jon Pierik and crime reporter Cam Houston were shown evidence of all this a month ago, but only wanted to know whether celebrity sports stars were implicated. Or had I seen any bikies? The consumer is left uninformed, and quite unprotected by regulatory authorities.

Stephen Dank administered peptides to rugby player Jon Mannah, who had been in remission from cancer but then died in 2013 after relapse. Dankenstein sued the Daily Telegraph for claiming that he had a case to answer for manslaughter, and the Supreme court agreed with the paper – dismissing the defamation complaint. No charges have yet been laid however, there’s uncertainty over the drug used. In April of this year, a peptides patient died suddenly, but there’s more chance of prosecution since TB4 is written in clinical records. Nonetheless, the Crown hasn’t yet taken action after 7 months – so perhaps it’ll suffice to blame the victims, rather than the perpetrators? That’s what the Essendon players discovered.

I recently lodged formal complaint to AHPRA over the disparaging statement by a guest Professor on radio “… holistic nature of alternative medicine albeit not evidence based … alter some of the biological behaviour in an adverse fashion, but that’s not out there in the public, so people who spruik these things may get away with it“. This was dismissed since the Private & Confidential letter states: “It cannot be concluded that these comments unreasonably reduce confidence in the therapy, as it is reasonable for Prof XXX to proffer this opinion“. That’s what I’d spent several months attempting to obtain directly, an admission that his ‘opinion’ had no supportive facts whatsoever, and indeed the therapy has a substantial gold-standard evidence base (used in cancer support at the Alfred Hospital). The man is a great oncologist (albeit one ignorant about complementary therapies), so I won’t further his embarrassment with naming. Doctors’ unfounded ideas are taken as advice from the Oracle, even justifying deadly human experimentation, but complaints are dealt with in secret and there’s no rights to appeal.

It’s a dog eat dog world. Some are rabid.

HealThy Self

Both the happiness that I strive for, and the suffering that I wish to be free of, are results. Recognizing that, one seeks out the causes that lead to these results: to well-being, or to grief and suffering. HH the Dalai Lama ’97.

Three years ago this blog kicked off with a rationale to ‘Fight’. Exploitation of the vulnerable, chronically ill as stable generators of revenue by Pfarma led to further posts exposing many of the tricks played within medical research. The worst example being a university assignment to investigate SmART which highlighted thousands of lives were deliberately put at risk and dozens were killed. “Shouldn’t we tell an authority?” Replied Prof Rory Wolfe: “Happens all the time“. I’m loathe to shatter the hopes of those trusting in drugs and their peddlers, but our understanding of the molecular basis of autoimmunology is barely embryonic. Pills have approval based upon short-term feedback, so “results may vary” because our knowledge of the body’s adaption to this newly created chemical imbalance is mostly guesswork. That’s paraphrasing Prof Eric Morand, head of rheumatology translational (from lab to patient) research at Monash. Prof David Healy describes medical kidnapping at his site RxISK.org
by well-intentioned physicians, who’re unfortunately stuck with a corrupted evidence base. Offering addictive, longterm palliative relief whilst waiting on the big breakthrough … one that  would then impact upon research institution sponsor’s revenue stream. Sure, that’s going to happen  Cynical, yes. Honest? Judge for yourself. Even a notification that misconduct would be published openly to the scientific community wasn’t enough to warrant regulatory interest. Self-regulation within industry is a nonsense.

The fight within. External forces can be blamed for a situation, or salvation can be sought in a medication, a therapy, even prayerful belief in higher power. Paramedic turned documentary filmmaker Daniel McGuire interviewed several Balian, or shaman, supernatural doctors (including Ketut from ‘Eat, Pray, Love’). These healers are sought when Western medicine has failed them, providing what’s essentially psychotherapy.  “I am like a bridge.” says one, Mangku Pogog: “I span a region between sickness and health. But the patient has to walk across.”
This is a putting to use of the character strengths of self-regulation and bravery. Chronic sickness can be a comfort zone, writes Daniel, referencing Joseph Campbell on mythology as a means of tricking oneself onto the path to becoming well. Leave one identity as recipient of healthcare behind, to then courageously explore another, uncertain world. Believe more in yourself than that  faith placed in doctors or deity.

Balian doctor Ketut

Balian doctor Ketut

Negativity bias. You may know it as survival instinct. Defensively reacting out of self-protection. Competitive skills from the jungle don’t help in survival any more, not when the backstabbing of office politics is destroying your peace of mind. As well as your health. A new era in mind and body healing has begun, focused on positives. Not just optimistic, positive thinking. But starting from a realization that your weaknesses are less of a vulnerability in an evolved society, then means  it’s more fruitful to be dedicating focus onto strengths. Positive psychology develops the strength within – recognizing that ‘cover your arse’ is a sign of pathetic submission to a toxic culture. Reactive, fear-driven living stimulates the fight or flight adrenal axis and your body suffers. Forever. Self-defense, and even self-esteem (which relies on comparisons to others) are less helpful than self-worth, which values your positive attributes over perceived failings.

Nobody needs to know of further weaknesses in healthcare provision. There’s enough reasons already presented to start making changes in your thinking, so this blog will now quiesce in order to concentrate on solutions.

Taking the easy way out

If you torture the data long enough, it will confess…..Ronald Coase (economist)

Carole is backtracking from PostGrad qualifications in Coaching, to undertake an undergrad Psychology degree.  I’m overwhelmed by the depth of statistical expertise expected of her, and despite having a GradDip in Clinical Research I draw a blank on something called factor analysis. Psychologists doing investigations gather together factors which may be influential on the patient outcome, and search for interactions in the data. Medicine doesn’t do this. In fact post-hoc analyses are anathema. Data dredging – shame! The example often given is from 1988, in the Lancet, when studying the benefit of aspirin after a heart attack it was found that subgrouping by starsign significantly affected recovery. [Laughter 🙂 ]

Subgroups behaving badly

Subgroups behaving badly

Actually, this is worth thinking about. If you’ve been told since birth the behaviours expected from a Taurean, it’s quite possible you need additional counselling to subdue the inner beast. And not simply a different med dosage. But everyone except the doctors mines data nowadays. The social sciences statistical packages are being heavily adopted by business to glean profitability trends, most notably since IBM acquired SPSS.

All clinical trials have a single purpose, ie to test a hypothesis, even if multiple outcomes are considered and when multi-arm interventions (factors) are being tested (see Bonferroni). If the analysis isn’t declared upfront in the protocol, the ensuing report will be discredited by colleagues. Worthless even, since physicians’ distrust of their peer’s integrity leads to a presumption of bias – doing unethical selective analysis so as to claim ‘Eureka’ for something, anything! Earnest conferences churn out checklists for marking studies – GRADE, CONSORT, SPIRIT, PRACTIHC, STROBE, and even specialty specific guidelines such as PEDro (for Hispanic physiotherapists?). All seemingly ensuring transparency in the system, but somehow we’re forever growing the numbers of malcontents who claim that the regulatory oversight is broken.

Myself included. The problem arises from the cartel of institutional research, and I’ve written here often about our delusional confidence.  The investment in years to attain a medical qualification, followed by the personal sacrifice of a research-entitling doctorate  leaves medicos with little choice but to play the game. I don’t have evidence as to whether the psych’s datamining or the physician’s approach to test a hypothesis yields more fruit but am concerned that despite their claims to foster creativity, the universities stultify nonconformists as we make progress by degrees. Just getting funding is enough grounds to claim a breakthrough.

This month saw the publish of the ‘Handbook of Academic Integrity’, 72 chapters and starting price $USD400. To prove there’s no sanctimony on my part, here’s a sneaky free link to half a dozen chapters.

Shameless, actually

Shameless, actually

Everyone’s guilty of wrongdoing, sin is in our nature. Doing something even more wrong here:

I can’t breathe… oxygen makes me sick

Antioxidants are good, right? Wrong! According to Cochrane, a statistical trainsmash of the results from all relevant clinical trials found that beta-carotene, vitamin E, and higher doses of vitamin A increase mortality. Some countries aren’t govt funded to license that link, so in brief: a collate of 78 studies with 297,000 participants determined that antioxidants caused harm. One might think that this made marketing of such products a little awkward, but its publication in 2012 hardly sent shockwaves around the world – indeed the report is one of many similar findings. Free radicals in advertising? Sure they can stay, although Trump may want to lock them up.

Thanks Ron, now for the weather....

Thanks Ron, now for the weather….

A little science (sorry), oxygen oxidates – that’s what makes metals rust. Stable oxygen or O2 does the opposite, it ‘reduces’ one electron at a time, becoming more oxidative in reactive species (ROS) superoxide ->hydrogen peroxide->hydroxyl. These free radicals are biologically toxic – the immune system uses such ROS to kill invading microorganisms. Lipid peroxidation is the process of cell membrane destruction by radicals (and this can be a programmed termination), so the body relies on antioxidant enzymes to keep this in moderation. The danger of hydrogen peroxide’s potent reactivity is shown by its use as rocket fuel, and in torpedoes – where there’s no air to burn in any conventional engine. A leak was responsible for the explosion that sank the nuclear submarine Kursk. We’ve been designed to run on rocket fuel, and no supplements can stop this.

In 1956 Professor Denham Harman argued in the Journal of Gerontology that breathing oxygen caused free radicals to prosper, ultimately leading to death. You can’t read that without a subscription, sorry again. In interview he explained: “I was sitting there reading. All of a sudden the phrase ‘free radicals’ crossed my mind. You know just ‘out the blue’. I’m sure you’ve had the same experience…. And it was apocryphal, it just was born of thin air! No one … everyone accepts it and no one has a clue to the source!“. Aside from the decade spent getting the idea to take root, this theory became mantra but has recently come under challenge, such as the article ‘The free-radical damage theory: Accumulating evidence against a simple link of oxidative stress to ageing and lifespan‘. I’m really, very sorry again, but this important research on whether oxygen is a good thing is also copyright. It’s only relevant to the cave salamander (Proteus anguinus) and the naked mole rat (Heterocephalus glaber) anyway, since these clever critters live up to 8 times longer than is typical, thriving under high oxidative stress in the absence of protective antioxidants – levels about 70 times lower. Perhaps exposure to advertising is proving fatal to our species? On the other hand 28 scientists collaborate in speculating that Harman’s thought bubble was a blunder, questioning accepted dogma that the longer you breathe air the closer you come to death.

Novak undergoes HBOT

Novak undergoes HBOT (photo courtesy of HyperMed)

I published a report on the efficacy of hyperbaric oxygen (HBOT) for neuralgia – the pain arising from damaged nerves. Anyone clipping a pulse oximeter to their finger nailbed knows that their O2 saturation is ~98%, nearly perfect due to uptake by haemoglobin (making blood red). HBOT in a compression chamber also floods the plasma with dissolved oxygen, and ROS increases exponentially.  Explaining the seemingly contradictory harm from oxidative stress was avoided by citing arguments about preconditioning – HBOT kickstarts natural responses. Speit calls it adaptive protection, and Deneke describes a rebound effect, whereas Thom considers the brief exposure in HBOT as minimal harm risk from ROS (a natural process anyway). One HBOT benefit is after traumatic brain injury – the vasoconstrictive effect of oxygen reduces cerebral fluid hence intracranial pressure, without compromising perfusion. Hypoxic neurons die, whereas if you overdose on oxygen then temporary convulsions are the worst that can happen. Another Cochrane review   discusses the consequence of such therapy – the authors raise moral issues of how much improvement justifies keeping alive (potentially) severely brain-damaged peoples. HBOT for Multiple Sclerosis is commonplace in the UK, but poor quality of clinical trial evidence raises the question over exploitation of vulnerable people clutching at straws. It’s also an interesting therapy for connective tissue disorders, and although benefit for sporting injury has been disproven , world #1 Novak Djokovic relies upon the treatment. Most centres (6000) are in China and Russia, with 306 in Mexico as reported in the ‘Physiology and Medicine of Hyperbaric Oxygen Therapy’ chapter contributed by Gerbino & Hampson, 2006. Medicine discredits much of their available research as evidence, either due to perceived bias or translation difficulties.

Quod me nutrit, me destruit (what nourishes me destroys me)

Quod me nutrit, me destruit (what nourishes me destroys me)

Oxygen builds you up, knocks you down, and builds you up again. The recent publication ‘Dual effect of oxidative stress on leukemia cancer induction and treatment’ informs us that ROS induce cancer, but that’s also how the cytotoxic chemo drugs destroy malignancies “…. only a thin line separates the beneficial level and deleterious level of ROS“. The mitochondria engine powering your cells maintains this fine balance, enough antioxidants to create the ROS and then eventually break them down to water.
Six times nominated for a Nobel Prize, Harman also published a paper linking polyunsaturated fats to cancer risk. Perhaps best not to eat avocado, nuts, seeds, fish, or leafy greens, and find air with less oxygen – such as in a high density city? Nutritionists are now rethinking fats, as I wrote elsewhere, meantime take it easy on the antioxidants.

Author Geoff’s lifespan is still 40 years short of Harman’s achievement, and I do take a supplement: CoQ10. It’s complex.

Important: This article may arouse emotions including despair. If afflicted with intolerable, chronic pain then I suggest discussing these issues with your support network.

'No future', the anthem for fans of Johnny Rotten

‘No future’, the anthem for Johnny Rotten/John Lydon fans.

Fibromyalgia (FM) pioneer Prof Fred Wolfe looked up the endgame result for 8,000 fibromites and 10,000 osteoarthritis sufferers over a period of up to 35 years. Neither condition showed increased mortality overall, but for those 15 with FM who succumbed to suicide this risk was treble the national average.  His report is similar to one in Denmark reporting a six-fold increased risk, and not unlike the outcomes found from tracking registry CFIDS for Chronic Fatigue. Some insights can be found from a survey on symptoms of pain and Quality of Life which shows medical professionals failing to validate their illness to be the major determinant of poor subjective score.

Women’s Healthy Aging Project (WHAP) has tracked a cohort of 440 in Melbourne for 25 years to study disease impact on Quality Affected Life-Years. Although musculoskeletal has been included in scope (above the red line), requests for any available research rheumatologist to partake have been unfruitful.

Govt priorities

Aussie Govt priorities: cancer, heart, neuro, mental, lung, diabetes, injury, and lastly arthritic.

Leaving aside the prioritised ranking of #8 (a Dutch burden report puts it up at #1, and cancer as #8), this is remarkable since Monash homes the Cochrane evidence base for musculoskeletal. Their collation of clinical guidelines by 700 active health care professionals, researchers and consumer representatives is a task shared with Ottawa, however the Canadian Govt recently pulled funding to Tugwell’s team. Although this group claims to be inclusive of FM, there’s no reviews of treatment efficacy published. Those are instead posted on the Pain, Palliative, and Supportive Care (PaPaS) group site, where 16 interventions are evaluated. Repeat – there’s no consideration given to treating FM syndrome, but focus is wholly upon symptomatic pain relief. In perpetuity, which makes the FM meds market rather attractive and trial sponsorship good business sense.

A challenge was issued to PaPaS editorial manager Prof Andrew Moore re the inclusion of a Pfizer employee, Dawn Carroll, in a 2009 ‘independent’ review of Pfizer products Lyrica and Neurontin (considered as helpful: “For gabapentin and pregabalin only we found reasonably good second tier evidence for efficacy” in the latest version). His reply was thoughtful and extensive, particularly in regard to their recent policy decision to segregate FM from neuropathic pain. This decision isolating distinct conditions is at odds with our TGA & PBS approvals for Lyrica/pregabalin for neuralgia but not FM – despite being the most commonly prescribed treatment. Further insanity is shown in the single approved med for FM, the SNRI (anti-depressant) milnacipran not actually being distributed in Australia.

But I can’t help but be troubled by their letter to the BMJ dismissing Dr Des Spence’s criticism of Cymbalta – and he’s someone who’s also skeptical of Lyrica’s benefit. Prof Moore reveals that he’s paid as a consultant by Eli-Lilly, the manufacturer of Cymbalta.

Hope comes from bold rheumatologists who offer scrip for Disease Modifying Anti-Rheumatic Drugs in FM, and patient communities who share their experiences. 65,000 fibromite subscribers to one site donate their data in hopes of cure or remission. 1.6% are on a DMARD (including the aggressive biological agents). There’s no formal trials ever run on these drugs suitability, this is totally circumventing a broken system. For other solutions, see here.