Sometimes a person with cancer goes into remission and we do not know why. This does not mean it has not occurred. We don’t criticise them or suggest it better they went out of remission.
A 2003 BMJ paper systematically reviewed trials of whether parachutes were effective in preventing trauma related to gravitational challenge. It found this had not been subjected to rigorous evaluation using randomised control trials.
A conflict can arise when the lived experience of the individual (or the obvious), has not been demonstrated in randomised control trials. While remaining the official gold standard, they have limitations and there are other, as valid ways, of assessing clinical outcomes.
Yet the public health establishment increasingly rejects them and seeks to shut down any dissent. Sometimes using lawfare.
Editor, Richard Horton wrote in The Lancet: “Public health science needed to pay more attention to the lived experiences of people in societies.”
A famous paper by John Ioannidis of Harvard looked at 49 of most highly regarded and influential studies of the previous 13 years. On retesting, 41% were wrong or significantly exaggerated. A paper published in March this year showed trials were subject to bias and this was generally hidden or ignored.
Most public health recommendations are based on epidemiological studies, also subject to bias and being wrong.
Remember, too, that most patients in general practice bear no resemblance to trial populations.
The Medical Republic, on January 18, reported only 5% of those with asthma would be accepted into trials of asthma medications. A different approach was the pragmatic evaluation trial (PET) where real world assessment of 4223 patients was done without exclusions. The results are far more applicable in the real world.
All this debate is fine – except when we reject the lived experience of the individual who has improved their health without a trial to back them. We can rightly say there is no trial evidence, but there is no excuse for the vitriol directed at these patients (and their healthcare supporters) who have found a way that works for them, especially when our current views are as likely to be wrong as to be right.
The most egregious example of this is the diet wars between supporters of low fat dietary guidelines (introduced without any actual evidence) in the early 1980s, and those advocating a low carb diet. Food sales show that the public has followed the guidelines. Obesity and type 2 diabetes rates have increased over the same time. Yet public health blames the public for not being compliant.
There actually is significant evidence for a low carb approach in weight management and type 2 diabetes. Recent work confirmed that a lower carb diet improves control in type 1 diabetes. Yet many on a low carb diet who improved their diabetes markers report being told to increase their carb intake and “balance” with insulin. This is a bit like having a fire and being told to pour petrol on it and “balance” with water.
AMSL Diabetes Ambassador Neil McLagan, who has type 1 diabetes, rode a push bike from Perth to Sydney on a low carb diet, showing what can be done.
Similarly, what of the person on a ketogenic or (shock horror) a paleo diet, who reports improved energy levels or reduced aches and pains? Do we ignore this? Do we tell them to eat more carbs? Do we abuse them for being whacko? Sadly, the mainstream approach is all of the above, because the lived experience does not matter.
Radiologist and blogger Dr Saurabh Jha wrote: “Science is at its weakest when scientists are most certain and the science is settled.”
A plenary speaker at the Dietitians Australia Conference in May tweeted she found the best track change EVER (sic) when seeing members of the LCHF (low-carb, high-fat) community described as “7 letters … begins with a w…” rather than non-conformists. Charming! She deleted it and apologised – but the attitude was evident. Defiance is to be condemned. New ideas are not welcome.
This typifies the public health establishment approach to those findings that ignoring official dietary advice improves their health. How dare you ignore us and improve your health?
Surely, we can be more open minded to the lived experience?
The last word goes to Richard Horton: “Public health today is crudely reductionist, often ignoring or denying the lives of those it purports to defend. Public health has evolved into an elitist endeavour, more concerned with its own power, reputation and survival.”
Dr Joe Kosterich is a Perth-based general practitioner. You can read more at drjoetoday.com