The Half-life of Facts

Aside

I was watching QI this morning. It’s a show where the facts are “Quite Interesting”, and generally obscure.

This morning the episode said something I was so intrigued with, that I rewound it to.
It stated that “At medical college, they usually teach that half of what medical students will learn, will be considered untrue in 10-20 years. This is termed the “half-life of facts”. That is to say that you know that half of the information will be untrue, you just don’t know which half.”

I found that to be Quite Interesting. Enough so that I decided to look the fact up, and see if there was any truth to it.

Samuel Arbesman, a mathematician at Harvard, titled his new book “The Half-life of Facts”. When talking to the Economist, he stated:

For example, in the area of medical science dealing with hepatitis and cirrhosis, two liver diseases, researchers actually measured how long it takes for half of the knowledge in these fields to be overturned. They gave a whole bunch of research papers from fifty years ago to a panel of experts and asked them which were still regarded as true and which had been refuted or no longer considered interesting. They plotted this on a graph. What they found is that there is a nice, smooth rate of decay; you can predict that every 45 years, half of this particular sort of knowledge gets outdated.”

But why am I citing an article in the Economist. Because you probably know a Dr that is still using that 50% of knowledge that is now outdated. Yet they treat you based on that knowledge.

According to Dr. Michael Gold from the Medical University of South Carolina; To paraphrase:

The half-life of medical knowledge is seven years.”

If Dr’s are not keeping up to date, they may be treating you based on what is now outdated knowledge. We have found one such Dr in the guise of the Medical Advisor of one national Advocacy group

He trained 50 years ago. Based on the half-life of facts, if he finished his training in 1970, by 2010, almost 50% of what he learned is outdated. Some of that is “knowledge” is still stating as fact which is on the groups public webiste. When we recently questioned this knowledge (which we showed with research papers to be obsolete) we were told by the Advisor “I don’t care.” (words in writing).

This attitude by the “Medical Avisor” of a major Advocacy Group for a rare condition leads to several questions.

  1. Why is he holding the position? Is it just that it has some kudos?
  2. How does his obsolete knowledge help patients today to live a better life when other Doctor use that “knowledge” to treat the patient.

Knowledge is Power, but obsolete Knowledge is DANGEROUS!

Continuing education is key to good Doctoring. And that continuing education must include reading recent research on the conditions they are treating and accepting that just because it goes against what they have been taught, doesn’t mean it is wrong, or that the Dr researching and promoting the new information is doing it “for ulterior motives”.

Next time you speak to your Dr, ask him the date of the last Research Paper was that they read? If it is before 2000, then there is a better than even chance that half that knowledge is obsolete, or will be in the next couple of years. Ask them if they have heard the term Half-life Of Facts.

Some will agree, others will get upset because they will be reminded that they are not as up to date as they should be, and others will probably refute the statement, or get angry about it. Most likely the latter, are so well past their half-life with knowledge, that they should perhaps be ignored completely.

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International Travel with a Chronic Illness

leaving-on-an-aircraft

Our Next Adventure Part 1

Having managed tripping up and down the North Island of New Zealand over the last 4 years, including flying, just to see how it would go, Derek and I want to venture a little further.

The Practice

To begin our preparation for an international flight, the first thing we did was try flying to Auckland.

It required a trip to the Airport, then flying to Auckland, and driving to Hamilton.

Derek took extra medication to fly.  He took extra hydrocortisone for the drive to Hamilton from Auckland.  He then lay down for a long rest when we got to Hamilton.  He also had to rest the next day, but that is normal when we travel any kind of distance.

On the whole, the trip was good.  We listened to others’ advice, had learned what Derek could manage, and when he needed to up dose.

Flying Further

This time we decided to go to Australia.  Originally our first trip overseas was going to be to Sydney or Melbourne for a weekend for a Show. After being offered a trip to Fiji earlier this year, and the realisation that a 2 day trip would be way too hard, we thought a longer trip would be better.  Because a friend with Addison’s was heading from Hong Kong to Brisbane for medical treatment, and we had friends in Brisbane, that was going to be our destination.

We are not the first to travel with chronic illness, and we won’t be the last.  When you look around the cue of people going to the flight, you don’t know who has a chronic illness, who has spent days and weeks preparing, and who has just grabbed a ticket and headed to the airport.

I asked my cousin, who’s husband has several serious medical issues, what they do to take a trip.

Trev just sorts all his medication and I just carry it…never had any problems, I think I have only been asked once and they were good about it. I never carry hospital documents but for you guys being a first since Derek has been sick, just get your GP to write a letter out lining the diagnosis and a list of the medications on the letter. Never really had problems with insurance just be up front about it all, you may not get full cover but shop around. We don`t stress about overseas travel, there is always a hospital where you go if things don`t go to plan. Just relax and enjoy the trip. We are probably not a good example…as we are pretty relaxed about it and just roll with it…lol…isn`t that naughty, but thats just us…great place we have just come back from there.

The trip they had returned from was a trip to celebrate 25 years since “Trev” had an organ transplant.  (By the way, I am totally in favour of organ transplants.  It saves lives, including that of my cousin’s husband so please think about donating organs if the unfortunate need should arise).

Booking the ticket.

We have made the decision to travel over to Australia.

Now What?

Do we need to get permission from the Dr?

We don’t believe so because we went to see her about going to Fiji with a work trip for Derek, and she said no, because of the risk of food poisoning, the possible need for INR while there, and the short time frame.

But she said that if we wanted to travel somewhere else, like Australia or England, then yes, she would make sure we could do it.

We bought the tickets. tickets

When I booked it, I also requested a wheelchair at both ends.  That meant an alert on the ticket booking, and I had to call a number, and speak to someone.

The flight is a Partner flight, which means we are booking through one airline, but the flight is provided through another, so there was a delay while the confirmed that the wheelchair was available.

We knew from experience going places with Derek he could not stand in line long.  He gets very fatigued just waiting at the supermarket, and if there are more than 2 in a line, he has to sit while we wait.

Then there is the timing of the flight.  We could fly out at 11am.  That would mean Derek could wake up as normal, and we could take our time.  But that also meant 9-12 hours flying as we would have to fly from Wellington to Auckland, wait for 2 or more hours, then fly to Brisbane.  We would arrive at night, and it would be a very long day.

That would take more out of him.

Alternatively we could fly out from Wellington at 7am.  And then fly for 4 hours, directly to Brisbane, and land at 8am Brisbane time.

This meant a lot less travel time, but a very early morning.  Derek normally wakes at 6am, takes his first round of HC, then goes back to sleep for an hour while he waits for his meds to kick in.

This trip would mean waking him at 4am to take his first round of HC, Drive to the airport, have breakfast, then check through Customs. (hopefully we haven’t got any fines that hold us back).

So next we book an appointment with the Dr.  We need:

  • A letter for treatment protocol (if he suffers an Adrenal Crisis)
  • A letter confirming he is able to fly (because of Antiphospholipid Syndrome and risk of DVT)
  • A list of medication (it needs to be declared at every port entry and exit).
  • Any meds he may run low on before he leaves, or soon after he gets back.
  • We also need to organise an INR when we land in Australia. This is the bit we are unsure of, but the essential bit to make sure it hasn’t dropped too low while flying, which could mean a blood clot.

Then there is Travel Insurance.

Normally you just buy it when you buy your tickets.  All you need for Australia is cover so if you get waylaid, you can get a change of ticket.  But if you have extra conditions, you need to tell them about them.  Then the cost goes way up.  It went up by $150 for Derek.

But we don’t know if we have declared everything as they didn’t have the ability to declare the catastrophic event he had.  And I hadn’t declared his prostate cancer.  Oh well, looks like a phone call.

I got two quotes.  So we needed to call both companies to see how things would change.

After a long phone call to each company, Derek’s insurance was going to cost $6 extra for the prostate cancer which is in remission.

Medication

Emergency Kit

The Take Every Where Kit

We would need a list to make sure we took everything.   It currently sat in multiple areas of the house.  We also needed to make sure it all had a proper prescription labels.

When my friend Wendy travelled from Hong Kong to Australia I told her to declare, declare, declare.  If she declared everything she would be fine.

I was going to work on the same principle.  But that is not the case for Derek as he takes DHEA (Dehydroepiandrosterone).  It is classed as an anabolic steroid, and therefore restricted.  Derek needs a licence to carry it into Australia, even as a prescription medication.

And one of his other medications needs authority to carry it out of New Zealand and then back into the country.

So, we have a Dr’s note x 2, we have an emergency letter, we have an application to take his medication into Australia.

We can only carry a month’s supply in and out of New Zealand but that’s fine because we are only away 6 days.

We have to wait to hear from the Dr regarding whether he needs 1 more medication for the trip, but otherwise, we have things ticked off that we need.

Getting all the advice is key to a successful trip.  So I went seeking advice.

Travel Advice from the Experts

The Addison’s Disease Self Help Group UK has some great advice:

  • Good general advice for long distance air travel includes:
  • Remember that air travel is dehydrating so you will need to drink more fluids than usual in the air. Drink alcohol, cola drinks, coffee and tea sparingly as these dehydrate the body further. If possible, carry a large bottle of water in your hand luggage. If you forget to bring your own water, be assertive about requesting extra refreshments from the cabin crew.
  • Walk around the plane as much as possible. Try to get up out of your seat every two hours to stretch your legs and keep the blood flowing.
  • Many chemist shops now stock knee-length support socks, which can help prevent the formation of blood clots that might lead to a deep-vein thrombosis (‘stroke’).
  • Adjust your watch to the time of your destination as the flight begins, and adjust your in-flight activities to that new time zone as well. Sleep through the in-flight meals, if necessary, to get attuned to the new time zone.
  • Try to book flights that allow you to arrive at your destination in the late afternoon or early evening local time, so that you get a night’s sleep at the end of your travelling. Flights which arrive in the early morning local time will leave you tired after travelling but having to stay up all the day before you get a proper night’s sleep.

So we missed the last one.

But we are going to stay at the house of an Addisonian, so they will know that Derek will be going to have a sleep when he arrives.

So everything we can think of is ticked off.  Now to wait.

Now to wait for the actual trip.

We are excited about the trip.  We have thought of all the possible issues, and taken care of everything we can.  Derek isn’t being wrapped in bubble wrap, but we are reducing the risk as much as possible without saying, “too hard, not going.”

Next Chapter – The trip.

I am hoping this will be a very dull chapter with just the excitement of having the Sunday lunch with other addisonian’s, and enjoying visiting somewhere I have never been.  I won’t apologise if my after trip post is boring, as that would be the best trip ever.

 

 

 

To Get Bitter or To Get Better?

bitterorbetter

It’s Your Choice.

We are determined that for Derek, we will get Better.  To get Bitter would mean bad health, constant hospital visits, and probably the end of our marriage.

I have been reading back over the medical records of Derek’s Hospital stay, starting with his Diagnosis of Cancer in May 2012.

I have been reading everything with new eyes.  Not the eyes of someone investigating what went wrong.  Not the eyes of someone needing to prove failures in the system but with the eyes of someone who is reading for the first time, what actually happened to Derek.

It is bringing back interesting memories of sitting by his bed being told he is going to die, being told he was the 2nd worst off patient on the cardiac ward and they didn’t know why. As a side note, the worst patient was rushed to ICU an hour after Derek had been told that by the most Senior Dr on the ward.  Four years on it is finally safe to relive what happened without anger, fear, or distress.

Now it is what it is.  We have travelled the road of the mourning process you travel when you suffer a serious loss.  We have both come out the other side.  If you are able to, looking back to see how far you have come can be a good thing.  It’s something everyone should do when they have a major crisis in their lives.  But it must be “safe” to do it.  And for Derek and me now, it is safe.

Over the first 3.5 years I have read the medical notes trying to find specific things.  I missed a lot of what the nurses said in their daily reports.  I missed the real struggle Derek went through, how sick he was, and how bad he still was when he finally left hospital.

He will never be the man he was in 2011.  We have mourned that loss.  Now we are working on what is left. Learning what we can improve, and how we can improve it.  And just as importantly, learning to live with what can’t be improved by learning to work around it.

The biggest challenge was, and still is, trying to make the medical staff understand that we KNOW he won’t get better, but if we don’t know what is wrong, how we can work either with it, or around it.  There is a belief with some professionals that, if it can’t be fixed, you don’t need to know how bad it is, or sometimes even what it is.

The best example for Derek is that I began complaining while Derek was in hospital in 2012 that he had new issues with swallowing.  I told every medical professional we spoke to.   I became a cracked record, repeating the same thing over and over.  But it wasn’t until I got angry with the medical fraternity as a whole in 2015, that they finally did a swallow examination and discovered that he does indeed have dysphagia.  It is reported as mild, but also acknowledged that it will be worse when fatigued, or sick.  The problem is, one of his main symptoms is fatigue.  So we had to know.

It also turned out that the reason he would get throat infections and not know, was because he has no feeling on the left side of his throat.  Now that we do know, we have worked out what foods he can eat when he is feeling good, vs what foods he can’t eat when feeling tired.  It’s not about who’s at fault, or should they have done the investigations earlier.  It’s about keeping Derek safe because when he gets tired he chokes, and now we know why, we can work around it.

bitter or better

Derek and I came to that point where we had a choice.

We went for a second opinion in 2015.  We had ideas of what else we could do to try to improve his QOL.  We also wanted to try and keep him out of hospital.  He has come close a couple of times since 2014, but we have managed to keep him out.

How?  By talking to other sufferers of the condition, following the latest research, and learning to listen to his body.

By being proactive in his care, not leaving it to the medical world to fix or forget.

For 2 years we became like a stuck record on a lot of his symptoms.  The common question was BUT WHAT IS CAUSING IT?  Why did he always choke, why did he get so tired when taking the recommended replacement steroid doses, why did he get sick every time he suffered a fight or flight reaction (an adrenaline rush).  Why was he ending up in Hospital every time he got sick.

We know why he chokes now, we know that the text book answer for replacement steroids 3 times per day (an idea from 1973 which most Endo’s still follow) is wrong.  We know that when you get a fright you get an adrenaline rush.  But it also causes a call on cortisol to bring your body back from the fight or flight.  This is not something the Endo’s tell you when talking about “stress dosing for illness injury”.  We learned by trial and error.  We learned the difference between UP dosing, which is taking a little extra steroid for a one off situation and STRESS Dosing which is in the books and requires 2 or 3 times your daily dose for several days because of serious illness, injury, or stress like a family death.

So we have made changes to his dosing.  We have changed his eating, we have moved to 4 times a day with hydrocortisone, although we are considering 5.  The latest research out of England says maybe 6x/day and no more than 4 hrs apart would be ideal.  We have included DHEA, which is something most Endo’s don’t even consider for men, yet it is the most prevalent pre-hormone produced by the adrenals.

And we are getting on with life.  Medical appointments are now just annual routine follow ups where we tell the Dr’s what Derek is are currently doing, and how it is working.  We tell them what he has tried that hasn’t worked.

Otherwise he is at the GP’s because he is sick.  Sometimes we don’t know what is wrong, we just know that things are not right.

He still has problems.  As I write this he is sick and has been for 5 weeks, with what was for me a simple cold.  It lasted 5 days for me but for him it became a full on chest infection which he still hasn’t recovered from.

If Derek was working in the Office, he would have worked from home for most of that time, but because he was already working from home all week, he has been able to work for most of that time.  If he wasn’t able to work from home, he would have had to take sick leave for 2-3 weeks.

He has to take extra cortisol just so we can go out at night.  This is something not in the books.  It has been learned from trial and error.  The trial being taking it, the error being not taking it and ending up sick for days afterwards.  We have learned that Derek needs to rest the day after we go out, to recover.

He is not the man he was, but looking back on how sick he was 4 years ago and the major insult his body received, we realise how far he has come.

In those 4 years we have both changed and we both understand a lot more about both the medical condition and the lack of knowledge by the medical profession, for what is after all, considered a rare condition.

We have also learned the truth about the bogus condition that attracts all the “natural health professionals” that promote snake oil for Adrenal Fatigue.

We have learned people that inform us that Derek can stop steroids if he takes their snake oil, that the only way to shut them down is to shut them up with scientific fact.

Like anyone with a Chronic Illness Derek has good days, and bad days.  He has days when he can’t get out of bed, he has days when he can do things around the house.  And that’s fine, because after 4 years, that is what we know is the life of the Chronically Ill.

It doesn’t matter the illness.  If you learn about it, you can learn to live with it, and go from being Bitter to being Better.

Please note when I say BETTER, I don’t mean WELL.  I mean learning what your limits are, and learning to manage them so you can be the best your Chronic illness allows you to be.

DHEA – To Take It or Not

What is DHEA?

Dehydroepiandrosterone (DHEA) is a drug that those in the Addison’s world talk about.   Some talk is positive, some is negative.
Some have tried it and think it is the best thing since sliced bread, others have tried, and stop quickly because of their perceived side effects.

Technically Dehydroepiandrosterone (DHEA) and DHEA sulfate (DHEAS) are the major circulating adrenal steroids and substrates for peripheral sex hormone biosynthesis.

DHEA is a Hormone precursor that is produced by the adrenal glands. The problem is, as a rule it is not replaced when your adrenal glands fail, especially in men. For 2 years, we didn’t know anything about it. It wasn’t an option talked about by Derek’s Public Hospital Endocrinologist. It was something I started hearing about in the Forums.

After discussing DHEA with a number of men in the forums I talked about it with Derek. He started investigating. He is not one to listen just to those taking it. He wanted to know the scientific information behind it.   He read multiple studies.

After 6 months of investigation we went to our Dr and asked if Derek could trial it. She had heard of it, but never scripted it so sent him to a private Endocrinologist who worked with “those with complex endocrine issues”. We spent an hour with this Dr.

At the end of that time, we walked out with a 3 month trial of DHEA. The catches:

        It is a prescription only medication.
        It is not available through your normal pharmacy.
        It is not subsidised, so you have to pay full price.
      You have to go to a compounding pharmacy.

DHEA and Testosterone

DHEA increases your Testosterone, in both women and men.  There is he risk of too high a rise in Testosterone because Derek has had, but is currently clear of, Prostate Cancer. We are aware that pushing his testosterone up too high may be an issue.

We decided the trial was worth a trial it.

We knew all this going in. We also hoped (but anyone who knows ACC wouldn’t hold their breath) that as this was a hormone produced by the Adrenal Glands, ACC would pay for it.

Step 1 – Get blood tests of important levels as a base point.

Step 2 – Send script to the Compounding Pharmacy. The Endo gave us the name and contact details. We then contacted them to find out what had to happen.

Step 3 – Wait. Because the drug had to be made for us especially, we knew it would take a few weeks. It finally arrived.

Step 4 – Trial Begins. There needed to be some provable results so we got blood testing. We started with levels of cholesterol, testosterone and DHEA.

Derek began the Trial. – 25mg/day

After a week he felt he wasn’t quite as tired as he normally was by the end of the week.  I actually observed one night about 5 days into the trial, that he was still up working on his tablet and watching TV at 9.15pm.

His normal bedtime for the last 3 years has been 7.30-8.00 pm.

Was this wishful thinking, or genuine result? Time would tell.

After a month I had noticed a difference. He seemed happier, more relaxed, less fatigued (we were able to do more things), but the biggest difference was he became more “loving”. He was not back to pre injury, but he would grab me as I walked past and give me a hug. Something he hadn’t done in a long time. Not that he hadn’t wanted to, he just hadn’t had the energy to do it.

After 3 months we had his levels checked again.

Testosterone Range – 9-25 nmol/L
Pre DHEA – 15.3 nmol/L
Post DHEA – 19.7 nmol/L

DHEA Serum Levels Range: 1.4-8.0 umol/L
Pre DHEA – <0.6 umol/L (undetectable)
Post DHEA 2.6 umol/L

LDL/HDL ratio: <4.0
Pre DHEA – 6.1
Post DHEA – 6.0

The Trial Ends

After 3 months it was decided Derek would take a 2 week break while we got another script, and to see if there was any obvious change.

Within 4 days, he was back to going to bed around 8.00pm at the latest. He was struggling to work properly, he was finding it hard to focus on things for too long.

Monday of week two he struggled home from work and collapsed into his chair. He could barely function. Tuesday got worse. Wednesday he was barely working. He took extra cortisol.

Thursday he again took extra cortisol, had a bad headache, and his blood pressure had begun jumping for no obvious reason. His mood was that of a person fatigued to the point of no patience.

Another thing we noticed is that at some in the first day or two of stopping the DHEA he had knocked his head, and had got a small “mark” which bled. Every morning for 2 weeks he would wash his face, and the small mark would bleed. On the Saturday before he started the DHEA again he was walking into the bathroom and walked into the door frame. He cut his forehead just below the previous mark, and right through his eyebrow. It wasn’t a serious cut, but enough that it took a while to stop bleeding.

The telling issue came at midnight Thursday night/Friday morning of week to off DHEA.

I woke to find Derek tossing and turning. I heard the tell tale signs of burping. I lay there, not letting him know I was awake, as he hates disturbing me.

He had developed a headache before going to bed, and by midnight it was a lot worse. He eventually took panadol and got up for a cup of tea. I went to the kitchen to see him, get him back to bed and, after resting for 5 minutes, I took his BP. After being in bed for 6 hours, it had risen to 157/99.

At this point I insisted he took more HC. We had two more days before we were going to have him take the DHEA again.

Should we give up and start it again?  Was this rapid downhill run truly due to the lack of DHEA?

He suffered on Friday, taking double dose HC. He was not ill, but showing signs still, of too low a cortisol level.  Saturday morning, laying late in bed, Derek asked me if he should take the DHEA or wait till the Sunday.  He was getting worse by the day so I told him to take it again.

Back on DHEA

Derek started taking DHEA again on Saturday, Sunday he felt the same (we didn’t expect anything else).  We have settled on 25mg/day.

Monday he worked from home. He felt tired, but not as bad as the previous week.

Tuesday night our youngest (18 yr old) came into the lounge and asked if we were going to bed, what was Dad still doing up.

We suddenly realised it was 9.45, and he was tired, but not struggling to the point of being desperate for bed.

Other things we noticed.

We have noticed some other things significant to Derek.

The most telling was the small mark on his forehead that had continued to bleed each morning on washing his face for the whole 2 weeks he didn’t take DHEA.

By Monday morning, not only did that mark finally stop bleeding when Derek washed his face, but so did the cut he received 2 days previously.

Since his CAPS event, he has suffered from sharp sudden migraine type symptoms when put in a fight or flight situation. Nobody has been able to get to the bottom of this. The only thing we know for certain is that, if it is a visual issue, the pain begins on the right side of his head, if it is auditory, it begins on the left.

What Derek didn’t realise until he stopped taking the DHEA is that he still suffers these incidents, but the sharpness of the migraine has been reduced when on DHEA. It wasn’t until he suffered a fright in the car on the second Saturday and he got the old “sharp” pain in his head did he realise that in the last 3 months, the pain had been more dull than sharp. He also suffered 3 events in one day.

Clearly this is a Plus for Derek.

The second thing he has noticed is his sleep. We have Fitbits. We use them, not only to track walking, but to track his sleep.

When not on DHEA Derek tends to “crash” for long periods of not moving.  When on DHEA his sleep is more of the normal 3 levels of sleep that “normal” people get.

During the 3 months trial period Derek got a cold.  It is not the first cold he has had but this time, it didn’t come to anything. He took an extra couple of days at home, but he didn’t need to take time in bed. He was able to function. This was a big change from previously when he would end up in bed, taking double or tripple dose HC for 2-3 days just to function.

He is going to continue taking this for at least a year to see if there is further improvement. The fatigue is still there, that is a side effect of the exective dysfunction, the effort to eat with his dysphagia, and the adrenal insufficiency, but it has definitely lessened. With some of the other improvements, for Derek at least, DHEA is something that should be replaced.

As a foot note. The Accident Compensation Corporation has agreed to fund the DHEA, our local Chemist is able to source if for us (from the compounding pharmacy so we simply take the Script to them when Derek takes other scripts in, and now the Dr knows what level to prescribe, she will do the pescriptions.

Today, all is good with the world (at least the world of DHEA).

If you are a male with Adrenal Insufficiency, and you haven’t thought about this hormone, it is worth giving it a go. There isn’t a lot of research where men are concerned, but that doesn’t mean it isn’t right for men. Speak to your Dr or Endocrinologist. If they say NO, ask them why, make them justify not giving it, rather than them making you justify why you should have it.

WARNING:  there are two types of DHEA.  Be careful which one you get.

Wild yam and diosgenin promoted as a “natural DHEA.”   In the laboratory DHEA is made from diosgenin, but this chemical reaction is not believed to occur in the human body. So taking wild yam extract will not increase DHEA levels in people. Individuals who are interested in taking DHEA should avoid wild yam products labelled as “natural DHEA.”   Copied from <http://www.nlm.nih.gov/medlineplus/druginfo/natural/970.html>