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.)

Just how low are Australian medical research standards?

1. Australian medical researchers tend to be less qualified than their US counterparts. If you don't believe me on this one, compare the authors of major guidelines in an area like heart disease. You will find that many of the US authors who are medical specialists also have a PhD or similar. Not so in Australia. Even many doctors involved in the regulation of medical research in Australia have no formal qualifications in science of any sort. A few lectures from a statistician during your medical training hardly counts. It is no wonder that the current parlous state has developed.

2. Inappropriate research practices are common worldwide. We know this from anonymous surveys of researchers who are asked if any of their colleagues have fudged results. Of course, researchers in Australia almost never report their colleagues because whistleblowers always fare badly.  Berserk legal responses are commonly reported by those who do question their colleagues.

3. These inappropriate practices, even if falling well short of actual fabrication, are serious. One of my previous posts details Retractionwatch comments that they are an insidious and widespread problem that dwarfs data fabrication in importance.

4. Yet despite the above, research retractions are incredibly rare. Retractions and corrections for the problems enumerated by Sessler are virtually unknown.

5. Contrary to popular opinion, all the Australian Research Integrity Commission does is comment on the legal aspects of any institutional review. If there wasn't a review, it won't comment!!!

Retraction are common in the US. Many researchers are found to have conducted research in an inappropriate manner. There are even schools to re-educate researchers. Not so in Australia.

Australians should be seriously alarmed by the inconceivably low number of retractions and findings of inappropriate practice. Standards cannot possibly be that high. The only possible explanation is that dodgy research remains on the books.

Overseas, researchers have been alerted to misconduct on the part of their colleagues by research data that look too perfect, or isn't made available. Australia has both problems. Original, de-identified data is often not made available, despite the Singapore Statement on Research Integrity saying it should be, and Australia's numbers on studies investigated and found to be misleading are way too perfect.

Want to look into it yourself? In Australia you can't. As I said in a previous post, lawyers tell you what to believe.

If you want more definitive evidence of poor research standards in Australia, you may have to wait for a royal commission.

Personally, I do not use any Australian research in determining how to look after my health. Look at my results. Learn how to be sceptical.

How do you expect to manage diabetes well if you don't reduce errors?

Q: Why is Type 2 error called Type 2 error?
A: Because it is an error, a mistake, it is the wrong thing to do.
Doctors keep talking about "good" evidence. There is no such thing, when asking what is the best way to manage diabetes. It only makes sense in a situation where there are only 2 options. Evidence can have a low probability of Type 1 error, or a low risk of Type 2 error. Receiver-operator theory says it cannot simultaneously minimise both.

 It also says that, given a fixed amount of information, decreasing Type 1 error will inevitably increase Type 2 error. Receiver-operator theory is one of the fundamental mathematical laws that governs sufficiently complex situations in the universe, which certainly applies to optimization of diabetes care.

It is not hard to understand in qualitative terms. I could base my diabetes care on all the data available. Or I could chose to base it on randomized trial evidence. If I chose the latter I would reduce Type 1 error. I would not be on useless and quite possibly harmful treatments. But on the other hand, I would increase Type 2 error. I would not be on treatments that were actually effective. I would have rejected useful treatments because my evidence filter was too restrictive.

The default medical practice of minimising Type 1 error is entirely appropriate if you are considering a treatment that is difficult, dangerous, expensive or time consuming.
On the other hand, insisting on an RCT before you go to, for example, yoga, is just silly. Look at all the successful T1s who have done yoga. Try to find anyone who says that yoga made their diabetes worse.

Now consider the alternative. How much will your diabetes suffer because you choose not to do yoga? If you are a Type 1 error reduction zealot you cannot answer this question because you reject all practical evidence that could be used to estimate the magnitude of the effect. A more sensible person may be quite happy with an answer based on an easily performed case control study.

Of course yoga is just one example of something that may help diabetes control. What are others? If you are the sort of person who bases their treatment only on randomised trials, you won't even have any idea what they are, because most potentially useful strategies will never be the subject of an RCT in your lifetime.

If you understand ROC, you could ask your doctor how they reduce Type 2 error. They may answer that they look at the sample size of RCTs, because that is a definition they learned from one of their textbooks to pass their exams.  Memorising is not understanding. Doctors can pass exams by learning a definition of study type, but show them an actual study, and many can't tell you what type it is.
Laugh at them by all means, but I wouldn't look for a new doctor on that basis because the next one will be no better. Learn enough to make your own decisions.

Incompetent Medical Regulators

It's happening as I write. Medical regulators taking potshots at a doctor for allegedly posting details of an unsafe medical treatment on social media. Never mind that the doctor is far more educated in the field than most or all of his accusers. Never mind that the allegedly unsafe treatment is successfully used by thousands in the world. Never mind how successful the doctor is. The cost to the public purse is enormous. Legal shenanigans is not a good way to spend the limited health dollar. There really needs to be a high level enquiry into the regulation of medicine.
Follow the story here over the next few months.

I would love to present more information here about how monumentally incompetent medical regulators are, but that information is currently confidential. You will have to wait until I give evidence at a legally privileged enquiry to see the damning evidence.

Related post: Health bureaucrats pervert science 26.01.2016

Do we really have free health care?

Todays Canberra Times reports new Productivity Commission data on the ACT Health system.

Emergency waiting times are the worst in Australia.
Waiting times for elective surgery are ridiculously long.
And this is not due to lack of money. Canberra Hospital is one of the most expensive in the country to run.

As a result of access problems, many people who can't afford it are forced into the private system, paying health insurance premiums they can only just afford, then huge gap payments on top of that if they require treatment.

The article reports that bulk billing rates in the ACT are the lowest in Australia. $15,000.00 is the reported cost of having a baby, with the quality of care also being questioned.

The ACT Government's war on Visiting Medical Officers (VMOs) in public hospitals has backfired badly. Forcing many VMOs into the private sector over the last decade has meant that the public system in unable to cope with demand and many patients have been forced to follow the VMOs into the private system. The same VMOs are now operating on the same patients, but in private rather than public, and earning more money for the same work.

Why do I blog? (Repeated for those hard of hearing)

Why do I blog? There are all the usual reasons. Plus I have a special one. For a long time now I have not been allowed to present at any educational meeting within ACT Health. Ever since I discovered a mathematical error in a paper which was being used by ACT doctors to determine the treatment their patients received.

Doctors seem to think they are smart when they say "no comment" All they are doing is guaranteeing that the problem will move to a different forum. It's not like I haven't discovered any issues worth discussing.

When I offered to present one of these issues at a meeting, I was told "No one is interested"

10,000 views of my combined social media contributions in the last 5 months says ACT Health was wrong.

Prednisolone drug of choice for Addison's?

Amin BMJ 2014;349:g4843 suggested prednisolone be the drug of first choice for people with primary Addison's disease.
There were a lot of illogical criticisms of this article by doctors in the BMJ, which will be the subject of a more detailed post later. A lot of these revolve around the so-called lack of evidence (because doctors refuse to collect any evidence that could disagree with their pre-conceived notions) and because many doctors still think in terms of plasma drug levels rather than effect site concentrations, because that is all they were taught.

Here are some very sensible comments from Fiona Godlee, editor of the BMJ.

1.Yes, patient preferences are important. N-of-1 trials not that difficult to conduct. If only more doctors understood the concept.
2. Doctors are acting contrary to the principles of Evidence Based Medicine if they insist on randomised trials before any treatment changes are made. They should stop denying "lesser" evidence. EBM is about using the best evidence available. Maintaining the status quo until an RCT is done is not EBM.
3. As stated, thrice daily hydrocortisone is better than the twice daily dose frequently prescribed in Australia.
4. IMHO the licensing of modified-release HC should not be revoked. There should be adequate post-marketing surveillance.


FWIW the only Addisonian olympic athlete I know of got better results with pred than HC.