responsibility Archives

Health Networking for Chronic Disease

The Usual Channels

We have accepted that your regular networking channels for health may offer some relief, but they won’t offer you anything approaching a cure. For example, If you are looking to reduce your dependency on medications? Avoid any ‘lifestyle information’ that has the seal of approval from pharmaceutical companies.

If you have diabetes and might try to reduce your carbohydrate, Diabetes Australia tells you to eat to the Australian Dietary Guidelines like the rest of the population (45 to 65% of calories from carbohydrates) when it is common sense that pharmaceutical use rises the more carbohydrates you eat. Eli Lilley supports the awards for diabetes educators in Australia and so is it a curious coincidence that their educator gave advice to me to eat more carbs?

We saw that Sanofi has a website to send you to chemists that they have educated to use their product. Dietitians Associations have breakfast manufacturers as partners. They continually tell you not to skip breakfast and to eat whole grains like it is a religion. Despite this, in Australia, your doctor will refer you to dietitians, and the government pays your fee to see them!

Unchain Yourself

You don’t need to chain yourself completely to this mess. Just accept that it is full of possible conflicts and corporate marketing and interests. You would go crazy trying to get to the truth while understanding this is just the chronic health industry that you want to leave behind.

Our quest to get some low carbohydrate dietetic advice looks bleak. Can it really be hard and dangerous to do it yourself? Worse than any danger from a short-term dietary change would be to do it incorrectly, not see any benefit and miss out on future good health.

Health Networking

So the big hint that came out of our PCOS analysis was that we saw in the Facebook comments on the DAA press release that there were Facebook comments from people who were doing low carb and who did not agree with the press release.

However, before we go there it is critical to understand the Macrofour principle:

The experts are dead!

If you don’t get that, then go back and re-read my blog from the beginning. Without that understanding, you may be seduced by all of the rhetoric of the people who have not walked a mile in your shoes. When they say ‘build your health team’ it really means ‘learn how to depend on us’. When they say ‘learn how to manage your disease’, it means ‘learn how to get comfortable with our products and services for life’. There is no conspiracy here. It is all just good business. After all:

There is not profit in healthy people and there is no profit in dead people. The chronically sick are the most profitable.

So as I said before, take the best that system can offer to buy you time, but do not accept that it is your best solution.

Finding the Right Experts

When I say the experts are dead, it doesn’t mean that all experts are useless and all expert knowledge is useless. Quite the contrary. The solution to your problem is likely to be underpinned by science and experts. They are just not the experts that would have you manage your chronic condition until you die. Equally, you need to avoid the snake oil salesmen who dishonestly offer you a product or cure. It seems a difficult road to navigate but there is a solution.

The Internet and Facebook are part of your ‘Health Team’

Social media is social networking. Social media health groups are health networking. If a better solution is being practised somewhere in the world, then somewhere on the internet is a forum or group that is exercising it and sharing the knowledge. You just need to find it.

Start by talking to people. Were they like you? What have they done? What worked and what didn’t work. Remember, your N=1 is not their N=1; but it might be N=2!

Dietitians Examples

Back to getting dietetics advice. A recent change in Australia is the formation of a group of independent dietitians. They were set up to form a register of consultant dietitians who had no other conflicting commercial interests. There are similar organisations of dietitians through Facebook groups. In the very next days, dietitian Matthew O’Neill is running an online seminar on low carb aimed at reconciling mainstream dietetics advice. They may still not be the experts you are looking for, but the reason that I know of these options is through social networking on Facebook, Twitter and the Internet.

In a similar fashion, we saw that Dietitian Franziska Spritzler favours a low-carb approach for PCOS and other ailments. Feng-Yuan Liu had an article written about her on Foodmed.net and Metro Dietetics where she works, understands the therapeutic low carb approach and has better information (based on my analysis) than the DAA for PCOS.

If you have diabetes and need intensive help, then Jennifer Elliott has a program that can be undertaken with doctor support. While being deregistered from the DAA might seem a bad thing, in the opinion of the low carb community on Facebook, she is very competent and knows her stuff. Especially when we have examined the DAA’s poor PCOS press release, it may be that being deregistered from the DAA is actually a badge of competence and innovation.

Of course, if you are in Tasmania, you could probably not go past the Nutrition for Life Team. Started by ‘silenced’ orthopaedic surgeon, Gary Fettke and run by his wife, Belinda. It seems that being deregistered, banned or silenced is almost a pre-requisite for credibility. We may look at that more closely in the future.

The point is that I know about these dietetic resources from networking in the low-carb community.

Where Else?

This is not exhaustive. There are these and many other resources. You can discern the worth of these by using your extended health team and the wisdom of crowds. You need to learn from people who have walked a mile in your shoes and hopefully have achieved a better outcome.

In a coming post, I will collate a list of Facebook groups and other resources for people to examine. These may have dated by the time you read this blog, but others will have taken their place. You will need to find them.

If you have low carb services or run a facebook group or other forum and may not be represented in the channels I may use or want to check that you are included, then please contact me. To be perfectly clear I do not accept payment for mention in my posts and any inclusion is at my complete discretion after having regard for your standing in the low carb community.

Is a Very Low Carb Ketogenic Diet (VLCKD) Safe?

Reconciling Strange Advice from Dietitians

If you are reading these posts, you will remember that we started this journey because we saw a media release that seemed odd. The Dietitian’s Association of Australia (DAA) recommended that ladies with Poly Cystic Ovarian Syndrome should eat more ‘grainy bread’. We found that advice not to be supported by the evidence and discovered that a Very Low Carbohydrate Ketogenic Diet (VLCKD) might be a solution. If you have come straight to this post, I recommend you read the previous three posts first.

So if the weight of evidence supports lowering our carbohydrate intake, is this going to harm our health and particularly, will it be harmful to undertake a VLCKD?

Revisiting the Evidence from the Studies

Our starting point is the very study that the DAA cited to suggest that ladies with PCOS (who reduced their carbohydrates) were harming their health and chances of fertility.

We note that these ladies only cut their carbohydrates by 5% and this appears to be cut by reducing sugar mostly. Did that harm their health?

Well, we need to remember that PCOS is a serious disease that can often progress to diabetes. Sufferers may have worse cardiovascular health. The case-control study cited by the DAA shows us something kind of interesting.

Despite the PCOS ladies all being sick, there was no significant difference in their health markers except for some of those indicating PCOS!

All of the following were not significantly different from the healthy ladies: Fasting glucose, Fasting insulin, HOMA2-β, HOMA2-IS, HOMA2-IR, All Cardiovascular risk factors, SHBG, DHEA-S and FSH.

By that information, dropping carbohydrates by 5% and increasing saturated fat appears to have done these ladies little harm when compared to the control group. That is especially the case for cardiovascular risk. We need to be mindful however that a VLCKD cuts carbohydrates much more aggressively.

We have the other studies cited by us that showed insulin resistance markers improved, cardiovascular markers remained insignificantly different or improved, and the ladies lost weight. It does not appear that any of these studies support that lowering carbohydrates has worsened the health of study participants. This was so even when they were following a VLCKD.

Evidence of Danger of a VLCKD

If you google “dangers of a ketogenic diet” you may see some issues raised.

You may have low blood sugars
You may have flu-like symptoms for a few days
Concern over a life-threatening condition called “Diabetic Ketoacidosis” or DKA
Acidosis (a more acidic body chemistry)
Kidney Stones
Thyroid problems
Nutrient Deficiency
Constipation

Should you consider these? Yes, of course, you should. Will all of these apply to you? Almost certainly not. For example, DKA is almost exclusively a concern for type 1 diabetics. Even then, you are reducing your blood sugar, and this is a condition of high blood sugar.

Should you be concerned that you may have low blood sugar for example? Of course you are as one of the effects you are seeking is precisely this. The health effects of too high blood sugar are well documented. However, if you are on blood glucose-lowering medicine this may be of concern as some types of medicine (although not metformin which you are likely to be on for PCOS) could cause hypoglycemia (dangerously low blood sugar).

If you are on any medications, obviously you need to discuss this with your doctor and be mindful that this is a therapeutic diet and your medication may need adjustment. For example, if you were on a diet to reduce your blood pressure and it was effective, you would need to adjust medication you were using to lower blood pressure.

Other Information on Risks and Safety

The Diet Doctor website has an extensive array of information about low carb and keto diets and particularly some of the concerns that there may be. I won’t cover those here on my blog because I don’t want to reinvent the wheel.

VLCKD and cycling — Is a VLCKD safer than cycling?

Now if I were to recommend to you to start cycling for your health and give you public advice to do so, I would need to run through all the things that you should consider. You should respect other traffic, wear a helmet, pump up your tyres to the right pressure, ring your bell to warn pedestrians, wear bright clothing, eye protection from dust and glare, adequate footwear, etc. Does that mean you should not try cycling for your health? I think you probably get the idea.

Long Term Considerations

I have seen “authorities” (including the DAA) warn that a VLCKD is dangerous because it has not been tested in the long-term. The implication is that you should not try it in the short term for this reason. I find that logic a little strange. It is important to realise that we are not committing to this diet long-term. A VLCKD is something that we are potentially going to to try for three to six months- about the length of those studies. We could expect that our results may not be too different from the study participants; but if they are, then like all trials we can re-assess from what we have learned.

So to be clear the approach is to do the N=1 trial on ourselves. If a medical professional monitors us, we will have N=1 results from relevant tests. Assuming that our health improves, we can continue. If there are adverse changes, then we can reassess and look for other reasons why our outcome differed from that expected.

Your N=1 Trial

Now if someone wishes to make headlines of the fact that I am advocating “self-experimentation” they obviously haven’t walked a mile in the shoes of someone with a chronic condition. The alternative is the following process. We could wait to have:

Experts do all the experiments on hundreds or thousands of people.
The experts write it up.
It accepted by a reputable journal.
That study peer reviewed.
The paper accepted by peers and published.
It further accepted by the research community. Acceptance may take a very long time- particularly if it is against orthodoxy.
The study converted into treatment protocols.
Bureaucrats anoint the treatment protocol as effective and safe.
Clinicians accept the treatment protocol as effective and safe.
Your doctor now advise you to make the change to stop eating some foods.

You are looking at a process that takes multiple years or decades. We will probably come back to this in a later post. Now if that is a new drug with potentially toxic side effects I would, in almost all circumstances, want that process to be robust.

Wait or try now?

Standing in your shoes, however:

If you are trying to conceive, your biological clock is running down.
You are probably suffering from side effects and symptoms that are unpleasant.
An unresolved condition like PCOS is likely to progress to more serious health concerns.
We are talking about reducing, avoiding or eliminating certain foods from our diet. We aren’t looking to take an experimental cancer drug!

What is a significant and risky change for the ‘system’ to recommend to the general population for N=millions is a different decision for N=1. Is it safe to for millions of people to try a VLCKD? If it were cycling and I recommended it, some people would die as a result of that recommendation. Is it safe for you and is the risk worth the potential benefit? I think we can both agree that you are capable of making that decision.

It is your decision. Do you take it?

Assuming that you do, then next we will look at some of the practicalities of doing your trial.

Taking Responsibility: The Rise of Your Health

Taking Responsibility

If the metaphor is “The Death of Experts”, then its companion is “The Rise of Your Health.” This is how you begin to take responsibility for it.

Your Support Network

In the matter of chronic disease, it is all about you. Sure you have a support network of family and friends, but unless they have walked a mile in your shoes, the best you can hope for is sympathy.

In my experience close family and friends, are more likely to keep you down the normal paths of medicine. It is a recommended strategy to receive the best management from conventional treatment while you find and evaluate alternatives. Not unlike your ‘medical team’, they will perceive any alternate strategy as being riskier than the standard advice.

Your Call, Not Theirs

Remember though that “The Experts are Dead.”. Unless they can offer an effective cure, all you are guaranteed is continued ill-health. While, in general, your support network (family and friends) will point you down the most conventional path out of concern for you to get the best possible care, unfortunately, they do not appreciate that the experts are dead. As you evaluate other treatment options, it is your decision as to make whether the risk of any ‘trial’ exceeds the risk of the expected outcome. No one else will take that decision for you. It is your responsibility.

In a sense, I am advocating that you need to be your expert. You don’t need to have Albert Einstein’s intellect, but start with his attitude:

Taking responsibility the Einstein way — Albert Einstein

Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.

It’s hard to accept that you are not getting the best treatment known. Medical treatment is costly, and we have justifiable pride in the medical knowledge of our society. We expect our health systems to be on the ball, our experts up to date, and to be offered the best possible treatment. Unfortunately, health systems have one of the slowest rates of the adoption of new ideas. We will examine some case studies and the reasons for this in future blogs. For now, understand that it often takes decades for new therapies to be accepted into standard practice.

Medical Innovation Takes Time

In my case, at diagnosis, the solution that I now employ, a low carbohydrate diet, had already been employed for treatment for more than a decade. A major magazine had already published it as a cure! In fact, in times well past it had been a standard treatment for my problem. The fact that nearly 20 years on it is still not the first line of therapy for type 2 diabetes seems astounding. When you know about medical innovation, it is less astounding, but none the less still absurd causing you to ponder another of Einstein’s quotes

Only two things are infinite, the universe and human stupidity, and I’m not sure about the former.

You can live for those decades with your condition (and possibly declining health) until it is offered to you (presuming that you survive) or you can take the responsibility to actively seek a solution earlier.

Which are you going to do?