Australian health bureaucrats can't tell lung from stomach, think heart is on the right side of the body.

Diabetics and anatomists will also be appalled at the depiction of the pancreas.

MATHS ILLEGAL - Australia's numeracy cringe

I am accused of promoting alternative approaches to disease management via social media.

Of course I do. I promote the use of maths.

Specifically I promote the used of least-squares minimisation to solve the problem of cortisol homeostasis. (with appropriate conditions on variable values) Interestingly, this gives a similar result to what some creative and successful Addison's patients have worked out by trial and error and posted online. (In contrast, look at the posts from patients on the Addison's disease Australia facebook page, complaining about their poor health, but refusing to even consider alternative treatments.) 

But when I mention this in medical circles I get stupid responses such as it not being "evidence-based" or "peer-reviewed" or "unproven" The real reason is that most doctors are so under-educated in maths the only calculus they know is a Tintin character. I'm yet to hear of any doctors in Canberra who can solve my Sudokus.

AHPRA tell me I cannot promote unproven treatments via social media. Apparently using maths doesn't count as proof.

AHPRA is trying to kill me.

AHPRA have launched an investigation of me, alleging I take doses of medication other than those prescribed by my endocrinologist.
Of course I do. I would be dead otherwise.

It seems they are incapable of distinguishing between the footballers who used prescribed oxycodone recreationally and a patient with Addison's disease faced with a potentially fatal adrenal crisis.

My endocrinologist prescribed me 50 micrograms of Florinef a day. On occasions this was too much, and I took half that.
However, if I took that even triple that dose on a mega back country ski day, I would end up collapsed in the snow, far from medical help, dry retching uncontrollably, and unable to stand up without feeling like I was going to pass out. Or worse. I know this from my own experience.

I learned from bitter reality that prescribed doses of Florinef were either excessive, or grossly inadequate. No endocrinologist has experience with many patients who do the sort of things I do in my spare time. And the peer reviewed literature on the subject is grossly deficient. Look for yourself.

Now I have AHPRA telling me I cannot take any dose of drug of drug which has not been prescribed by my endocrinologist or GP, because it is illegal. It seems I am supposed to die from an adrenal crisis if the appropriate paperwork has not been done.

I'm wondering whether next week I should go for a long run taking only my prescribed dose and finish in Parliament House having to be carried out in an ambulance because my blood pressure is so low I can't stand up.

You saw in a previous post a bsl of 1.8; low BP might be my next project.

Half marathon 21.1km in 1:34:57

Yesterday I ran my first half marathon. Despite being very average at school sport, I placed 2nd in the over 55s (would have been 3rd if Simon had not been sick) My time was 1:34:57
How many Type 1s can do that?
How many Addison's patients?
Another victory for maths over medical dogma.

Doctors clueless about post op pain control

My friend was completely unimpressed to receive this prescription for pain relief on discharge less than 24 hours after a hernia repair.
Is there anywhere in the world apart from Canberra where this is considered acceptable practice?
Panadeine forte one tablet each morning
Endone 5 mg every 4 hours if required

The patient was completely pain free after a simple procedure under local anaesthesia, yet is prescribed 30mg of endone to take home. Have any doctors there heard of the hillbilly heroin problem?

As for the paracetamol and codeine doses...

Is it technically illegal for diabetics to vary their insulin doses?

I was contacted yesterday by a representative of AHPRA who informed me that I was being investigated for self-prescribing.

The evidence he cited came from my blog which shows that in varying circumstances, I alter the doses of drugs used to manage my diabetes and Addison’s disease.

He said it was the opinion of the entire AHPRA Board in Canberra that this constituted self-prescribing and was illegal.

Medical advice to a patient with Addison’s that they should not stress-dose is negligent in the extreme.

Are approaches like DAFNE, and stress-dosing of steroids in Addison’s illegal unless specifically prescribed, or are AHPRA incompetent in their interpretation of existing legislation?

Are my doctors negligent if they have not provided written advice on whether I should alter my drug doses in varying circumstances?




ps. Readers may wish to speculate on whether it is a coincidence that I received this phone call just weeks after making a submission to the current Senate Inquiry into harassment of doctors by AHPRA

Some doctors say I use the wrong drugs, in the wrong way, but look at my results!

National Orienteering League competition in Melbourne. While the Opens battled for world ranking points, I competed in the M50s, placing equal 4th.

Those doctors who say I use the wrong drugs, in the wrong doses, by the wrong method will no doubt continue to make pathetic excuses for the poor performance of their own patients, and will continue to use the same ridiculous glucose control algorithms.
If you don't learn enough maths, you can't even quantify how disadvantaged you are by your ignorance.

How many patients died because doctors ignored drug company recommendations?

  

Vioxx was always a drug considered unsafe in patients in patients with renal failure, or at high risk of developing it. In 2002 the FDA implemented labelling changes to reflect the findings of the VIGOR study. The labelling changes included information about the increase in risk of cardiovascular events, including heart attack. The nature of these risks was such that they were most likely to manifest in patients already at high risk of CVS events, such as the elderly, or those with a recent neck of femur fracture (NOF).

Yet years later, a tertiary trauma hospital was still recommending routine prescription of Vioxx to a NOF patients either with or at high risk of both renal failure and cardiovascular events.

Patient often fall and break their hip because they have had a small cardiac or cerebral event, and even if their kidneys are normal before they fall, their age, dehydration, surgery and anaesthesia, blood transfusions, muscle necrosis and other factors mean they are at considerable risk of developing it. 

Look at a page from the protocol which was approved by the hospital executive, and to be followed by intern and resident doctors. Vioxx was to be prescribed regardless. 

Yet history records that doctors were extremely successful at diverting the blame for patient deaths onto the drug company, despite the fact that its product guidelines advised against the use in patients like these.

ps. note also the endone dosage recommendations. Not at all appropriate for this patient group.

Is there any other teaching hospital in the world that was stupid enough to make vioxx part of a treatment protocol for anyone, let alone high risk patients in Sept 2004? Only Canberra?

Osteoporosis prevention

Government guidelines for osteoporosis prevention state that in addition to traditional weight-bearing exercise, patients should also engage in "exercise that involves pulling forces acting on entheses (tendon insertions) of long bones, even in the very elderly. Weight bearing and resistive exercises are better for bone strength than .. exercises such as swimming and cycling."
"It should also be noted that the benefits are only maintained as long as the patients take exercise."
Note that these recommendations apply to the upper as well as the lower limbs.
I'm only 55 so I have no excuse, but very few Addison's patients seem to do much in the way of physical therapy, presumably because their doctors fail to stress its importance.

One rule of social media is that if something is not reported at all on social media it either doesn't happen or is very rare. I have read literally hundreds of posts from many forums and other sources about where Addison's patients have discussed doses and dose reduction to avoid steroid side effects, yet I can't recall a single post (apart from my own) where any arm exercise to prevent osteoporosis has been discussed.

Patients frequently report on social media that their doctor has pushed steroid dose reduction,with its consequent loss of energy and life enjoyment. Patients do report that their doctors give them drugs when their bones do get brittle.
Patients don't report that their doctor has made them aware of the recommended clinical guidelines shown above.

Medical body suggests patient with Addison's disease should NOT be taking steroids. Yes, some doctors really are that stupid.

The other day I received a phone call from AHPRA threatening me with various dire consequences if I did not forward evidence that I had been prescribed steroids. The clear implication was that I should not be taking them.
AHPRA knows full well that I have Addison's disease. I have documentary evidence of that, and I reminded them again during that phone call.
But they were insistent. They did not believe that I had a valid reason for taking steroids and requested evidence that my endocrinologist had prescribed them for me.
WTF?
Addison's and other forms of adrenal insufficiency are not that rare, yet there is an appalling level of ignorance about it among senior doctors.

Social media defeats unscientific doctors on medical cannabis.

Many doctors have spent years opposing the introduction of therapeutic cannabis into any area of medicine, whether for treatment of pain, anorexia or epilepsy.
So opposed are they, that many refuse to even support research into the potential uses. That way they can continue to say there is no good evidence to support its use.

Fortunately, politicians are sensible enough to be skeptical of self-professed medical experts.
They listened to social media instead.

"The rise of medical marijuana...is an example of what can be achieved through the sharing of personal stories on the Internet and social media.." reports Medscape Medical News.

They quote Daniel Friedman, MD, NYU School of Medicine, co-author of a recent review in The New England Journal of Medicine, as saying " It is a very interesting mix of science, politics and social media which has moved medical marijuana to the forefront of treatment...."

 " It was used medicinally in ancient China and by Victorian neurologists for seizures, but it has never been properly scientifically studied. That is now happening."

" This has come about because individuals have shared anecdotal experiences about its effectiveness in children with severe intractable epilepsy on the Internet.."

Whether cannabis products are ultimately found to be effective in any one particular area is irrelevant here. It is completely unscientific of doctors to white-ant support for research which will determine its ultimate place in the therapeutic armamentarium.


pics

The internet knows way more than your doctor. Here's proof.

There is an extremely limited amount of information available to endocrinologists in the peer-reviewed literature on rare diseases such as Type 2 polyglandular autoimmune syndrome. Mostly your doctor will base their recommendations on what they know about diabetes and Addison's separately, ignoring the interaction between the two conditions. They often fail to take into account the fact that fluctuating glucocorticoid levels typical of standard Addison's treatment play havoc with blood glucose control.

What does your endo know?

Here is the typical spiel from a large textbook on internal medicine, complete : ".hydrocortisone dosage usually should not be >30mg/day: otherwise, insulin requirements are increased. It is often difficult to completely control hyperglycemia in this syndrome."
Not very reassuring is it. No comment on different drug regimens or the clinical outcome of each.

If your doctor is extremely conscientious, they may search the ncbi database of medical literature for specific articles on the combined conditions. Here is how little they will find.

1. Type 1 diabetes and polyglandular autoimmune syndrome. A review. Lots on diagnosis and theory. Nothing on treatments and outcomes.

2. case report. Pt given cortisone acetate tds. No outcome described.

3. No treatment or outcome described, but interestingly, of the 24% of Addison's only patients who did not take HC as their only glucocorticoid, the commonest treatment was a combination of pred and HC.

4. Single case report. Outcome not reported.

5. , 6, 8, 9, 10, 12, 13 Lab research. No clinical info

7. Single case report. went on HC. Able to work again, re-gained drivers licence. thats it.

11. four patients diagnosed. No treatment of outcomes described.

14. Immunologic endocrine disorders . Clinical , No treatment of outcomes described.

15 No relevance

16. Not diabetes related, but interesting in that is describes as useful a low GI, high fat dietary approach to a complication of Addison's!

17-27. Lab data

28. A second paper on hypoglycemia in Addison's disease. Due to fluctuating HC levels!!! Admits "unphysiological dosing with orally available glucocorticoids. Recommended "Shifting the last hydrocortisone dose to the late evening.." CGM used.

 All others up to 40. No useful treatment or outcome data.

That's the top 40 papers, and more than a thousand pages of pdf on my computer. Pitifully deficient in useful clinical information, isn't it. If you have a polyglandular syndrome you would like to see at least a moderate number of patients tried on different treatments and outcomes recorded. Sorry to disappoint you, but your doctors' scientific resources are not even close to that.

Yes, an extremely obsessive doctor with lots of free time will be able to dig up a few extra cases, but even with those, the total sum of the peer-reviewed literature contains less useful information for me than my own experience with various combinations of treatment.

Soon, lets look at the wealth of information on the internet from actual patients (apart from myself) who have tried lots of different approaches, for long periods of time, and described their outcomes.

tbc

Melbourne research concludes paleo diet causes 15kg weight gain in 2 months for the average 100kg person.

I don't think I need to comment on this.
I won't be holding my breath waiting for the results to be replicated in humans.

Bureaucratic doctors fiddle while Rome burns

AHPRA and related medical regulators have been in the news recently. After what was presumably a substantial lobbying effort, they have been granted new powers to deal with health bloggers. You know, the ones who forced doctors to begrudgingly admit that low carb diets work for diabetes, and cannabis products work for some with intractable epilepsy. Embarrassing isn't it?

Yet over the same time period they seem to have been doing nothing about the appalling number of neonatal deaths at Bacchus Marsh.

Bacchus Marsh - the name invokes contrary images. No doubt AHPRA and friends are celebrating their newfound power Bacchanalian style, while would be parents are in a marsh of despair.

Word nerds will also note Crookwell, NSW as an oxymoron. They may also point to the tautological Wombeyan Caves located nearby.

Back to serious and some comments from the Victorian Health Minister.

According to the ABC she said the regulator had not done its job and must focus more on patients' interests.
It quotes her as saying
"..there was series of cascading failures."
"There was a failure at the regulator level.. to pick up some of the early warning signs."

Looking back over my last dozen posts, you can see how many organisations think that there is a problem with doctors hiding bad outcomes, or researchers hiding findings they don't like by selective presentation of data. The BMJ, the ICMJE, The Singapore Statement authors, Retractionwatch. the list goes on.

People wonder how the anti vaccination lobby has so much support, given the weakness of their arguments. I am not a supporter of the AVN in any way, but it is not surprising really.
How can doctors who say vaccines are safe be believed when doctors and medical researchers are continually being found to be very selective with the truth.

As the saying goes, a half truth is a lie.


Bacchus pics tf

Added 1.3.16: Scepticism of doctors' recommendations, whether diet or vaccination related, is just one example of the low level of public trust in administrators, the subject of an article in today's Canberra Times.
NAA Director-General  David Fricker has recently spoken at the National Press Club on suppression of information. "There seems to be an accepted position that the general public must always resort to freedom of information legislation to obtain the information it needs.."
He also referenced former Department of PM&C Peter Shergold's recent review of government failing, which found there was a need to further improve access to information.

DAFNE? Not for this diabetes legend!

There aren't many people in the world who have lived with Type 1 diabetes for 70 years. Winsome Johnston is one. What she does is no secret. She is happy to tell people that she rejects normal eating with its accompanying excessive insulin doses. Here are her words:
".. do all the right things and not eat the wrong things."
"..it's sometimes hard if you go to parties..But I think if you always tell the person whose having a party that there are certain things you can't eat, then it makes it a lot easier."

She rejects eating what her healthy friends eat.
Doctors may tell you that other approaches are possible, but they can't point to even a single person who has used a DAFNE type strategy for 70 years and done well.

winsome pic here

related post on Bob Krause

To those readers who call my stories on Winsome and Bob selective information presentation, please forward me details of any or all similar Type 1s who have done as well by eating a population average amount and type of carbs as part of a low fat diet, and I will gladly include them here.
I have been unable to find any myself in my online sampling.

Theft of confidential patient information from The Canberra Hospital?

Will doctors stop at nothing to try and discredit my interpretation of research data? You may have heard rumours that I was involved in the inappropriate accessing of confidential patient records from The Canberra Hospital.  Do not believe them.

If you are thinking that these rumours may have an element of truth, consider the following.
Who first stated that they suspected me, and what was their evidence?
Given that I was not involved, WHO DID steal the data?
I have heard from too many people that I am suspected, yet years down the track, no formal charges have been made.
WHY HAVE PATIENTS NOT BEEN NOTIFIED? Many patients' medical records were allegedly involved, yet none of those patients have been notified by the Hospital afaik.

Hospitals and health clinics should be required to notify patients if their personal medical records have been the subject of a privacy breach. And this is one piece of legislation that should be made retrospective.

Someone knows who accessed these patients' records. The Hospital computer logs every occasion on which records are accessed electronically, and the account from which they are accessed is recorded, as is the time and date. What really went on?

Note: The Privacy Commissioner will not investigate based on third party reports. There will not be any enquiry until a patient finds out and is sufficiently concerned and motivated to lodge a formal notification with the OAIC. This practice should also change.

CSIRO belatedly joins the low carb team, but still thinks dietary cholesterol causes heart disease

Last weeks news: Low Carb Zen has half a million likes on facebook.

This weeks news: CSIRO has a "NEW" diet!! It's LOW CARB !!!

But it seems CSIRO still haven't read the Framingham study, which found absolutely no connection between dietary cholesterol and serum cholesterol. Maybe that will be in their next promo. And maybe one day they will look at the evidence behind the new US recommendations on saturated fat.

Cardiologist calls dietary guidelines a "guess" based on "inadequate" evidence

These were the words used by Dr Steven Nissen, chairman of cardiovascular medicine at the Cleveland Clinic about the new US dietary guidelines. Lets look at the fiasco that is nutrition science research.
The recent UN review of meat consumption looked at 800 studies (probably costing tens of millions of dollars in all), with their only conclusion on fresh meat being to eat a bit less. Really? Researchers have milked grants, salaries and funding to come to the same conclusion as my mother did 40 years ago as she watched the neighbours get fatter and have heart attacks.
After decades of advice from dietitians to limit egg consumption, we now have the NHS saying there is "no recommended limit" Limits on fat intake have also been relaxed, for the reasons that thousands of health bloggers have been pointing out for years.
Dietitians' advice changes more than the weather. Bran and wheat germ on your cereal were once heavily promoted. Thankfully no longer.

Decades of research has done little but line researchers pockets. Dr Nissen laments " Diet is essential to health.. we are really left with no solid advice for most people"

He calls on Governments to conduct well controlled studies that address the right questions. Medical researchers are failing to answer the questions that are important to patients. As a diabetic I want information on long term effects and important outcomes like quality of life, mobility, good eyesight and absence of fatigue, not the short term effect of some drug on serum rhubarb.

Before you donate money to medical research, consider the vast amount of futile research which never had any chance of producing Nissen's "solid" evidence, but merely muddied the waters. Choose your beneficiaries wisely.



NHS pic
Nissen pic

Yet MORE evidence of doctors being careless with the truth

Selective presentation of data by doctors is in the news again today with the Fertility Society of Australia concerned that some IVF clinics are presenting misleading figures on their success rates.
It is not only medical research that is allegedly compromised by lies, damned lies and statistics. Audit / Quality Assurance activities are also being questioned.
It is not hard to do. If you filter data by enough variables/subgroups you can find numbers to support any conclusion you want. And you don't even have to fabricate data. Why fabricate data when you can get exactly the same result by generating lots of data and then presenting selectively?
I have never heard of any medical researcher in Australia being busted for failing to tell the whole story. Yet the end result is no different from data fabrication.

Can you trust doctors to tell you the whole story?
It really is time for an enquiry into medical ethics. I suggest the ICMJE choose the people to run it.

(ivf pic to go here)

The walls are closing in on incompetent and irresponsible researchers

No longer will irresponsible researchers who selectively present data be protected by their friends in high places under new proposals by the International Committee of Medical Journal Editors. (ICMJE)
The BMJ has deplored the failure of regulators to take any action on selective data presentation, and is appalled by the use of defamation laws to inhibit valid scientific discussion of research findings.
I have previously referred to the comments of Sessler and Retractionwatch that data "massaging" is a widespread and serious problem in medical research, much more serious than actual data fabrication.

In brief, the ICMJE is proposing to not only make de-identified raw data available within 6 months of publication, but also require that authors include a plan for data sharing as a component of clinical trial registration.

Journal editors plan to withhold publication of those researchers who might otherwise resort to bureaucratic obfuscation and legal thuggery to avoid public scrutiny of their work.

It can't happen soon enough.

Don't believe that data massaging is a problem in health research relevant to T1 diabetes? Look at how the abysmal research of Keys has pervaded decades of medical "thinking" in Australia. How many articles have quoted him, or quoted articles that have quoted him (and so on) to support the low cholesterol diet? More on that later.


Additional thought. Question really. Are these researchers deliberately setting out to mislead, or are they just too under-educated to realise the scientific implications of selective data presentation?
Answer: It matters not. The research needs to be withdrawn and the researcher re-educated either way. Ask any lawyer. The requirement to prove intent is exceedingly difficult to meet, and will result in no finding in many cases.

(ICMJE pic to go here.)