Don't Say It!

There are some things you should just never say to someone with lupus.

1. Everyone gets tired. Lupus fatigue is far more than just being tired. Imagine having heavy weights hanging off your legs, feet, hands, arms and head - all day every day.  That's what dragging our bodies through life feels like.
2. At least it's not cancer. I have a horrible illness that may kill me, and means I will take toxic drugs (some of which are the same ones given to cancer patients) probably for the rest of my life, can attack any organ without warning, and makes me sick each and every day.  No, it's not cancer.  People with cancer have a rotten time, but so do people with chronic illnesses.  
3. You should put more effort in. Some days, just getting out of bed takes all the strength I can manage. I do my best, and I already feel guilty for all the things I can't do.  I don't need your judgement as well.
4. You need to take something to boost your immune system.  My immune system is what's killing me. It doesn't need any help.
5. I know someone who can cure it. No, you don't. You know someone who wants to sell me snake oil - who wants to take advantage of me, because they think I might be desperate enough to be vulnerable.
6. A friend of mine had that but they were cured. So far there is no cure. Your friend is either in remission, or was misdiagnosed.
7. Why don't you try... My life is in danger here.  I don't have to justify to you why I choose to do as my doctors say.
8. You need to get out in the sun more. Sunlight makes lupus worse.  Think of me as the vampire you know.  I'll stay out of the ultraviolet light as much as possible, thanks.
9. All those drugs you take are dangerous. I know. They're horrible. The only thing worse than taking them, is not taking them.
10. You should get more exercise. I have a limited amount of energy for the day, once I've used it it's gone.  I will use my precious little bit of energy on whatever seems most important to me.
11. You don't look disabled, you don't need a disabled parking space. You don't look like an idiot either. I guess there's some things you just can't see.
12. You don't look sick. I'm so awesome, I can look well, while my whole body is falling apart.  That's my superpower. What's yours?

www.patreon.com/IrisCarden

Yet Another "Cure"

Nothing, not pain, not fatigue, not anything lupus can throw at me, will ruin an otherwise good day for me faster than someone (not one of my doctors) offering me yet another "cure" for lupus.

As if I hadn't already been offered a hundred thousand other (insert your favourite expletive here) "cures" already!  Lupus has got to be one of the world's most "cured" incurable diseases!

I've heard them all; from the person who cured lupus by giving up coffee; to marijuana cures lupus and absolutely everything else; to lupus is my own fault and I either need to pray harder or have a better mental attitude; to any number of supplements that contain ingredients which are actually toxic in combination with lupus drugs; to all kinds of new age crystals and chants and tapping and touching; to lupus and other autoimmune diseases don't really exist; to eating special diets.  You name it, I've heard it.  If you have lupus, I'd be willing to bet you've heard more than your fair share of them, too. You might even have tried some of them (hopefully not any of the actually dangerous ones.)

I was offered another cure today, and almost hit someone I quite like.  I know this person was only trying to be helpful, but I just can't cope with this same (again, insert favourite expletive here) all over again.

So why do people do this?

Well, there are lots of reasons.

The first reason is just plain evil.  It's to exploit us.  There are people who look around, see a group of people fighting for our lives and see a great way to make money.  These are the people (often massive multinational companies, but also small solo operators) who sell things that you'll find listed, but not registered with the Therapeutic Goods Administration - or the equivalent in your country.

Things that are listed don't have to be proven to do anything, they just have to be proven to be basically harmless.  (But that doesn't take into account whether they are harmless in conjunction with whatever actual medication you are taking.)  Things registered with the TGA are the ones that have to have scientific evidence that the good they will do outweighs the potential harm of side effects. (See the related post listed below.)

The others are at least well-meaning.

There are the people who misunderstand science. Some people see early results of research, and think that's the whole story.  Research has begun on X-Y-Z and early results are positive.  People read this and think that's the solution, they have to tell everyone to do that and everything will be OK.   But one early study is not the whole of the story.  Science is done with trials and tests and experiments being repeated over and over again.  One study doesn't tell you whether the results will be consistent over time, or what problems might arise with further studies.  An experiment with rats might eventually lead to trials on humans - but an experiment just on rats doesn't guarantee exactly the same results in humans. Science takes time to test and retest, to be sure to get things right.  Jumping the gun and acting as if early indicators are the final result can lead to disaster. Oh, and when the early tests are on a component of (something easily accessible), that doesn't mean that that easily accessible thing can cure it.  There's a matter of dosage, and of whether that component works when it's in combination with all the other components of the same thing.

There are the people who want to believe every problem has a solution.  Human beings have trouble with the idea that some problems don't have easy solutions, or don't have solutions at all.  Some people will have such a great problem with it they will endeavour to come up with a very simple solution and then put their faith in it.  (It's not just with chronic illness - look at the over-simplified political solutions people try to come up with for extremely complex social and political problems.)

There are the people who "got better". Some people who have lupus, or appear to have lupus get better.  They assume that whatever they were doing when they got better has cured their lupus, and they are excited and want everyone else to get better too, and so try to encourage everyone to do the same thing.  Sometimes those people were misdiagnosed and didn't have lupus at all.  Sometimes they went into remission.  Lupus flares and goes into remission at random times, for unknown reasons.  Remission isn't a cure, it just means lupus is not active for now, and if we're lucky for a long time. (Some really lucky people have had lupus go into remission for 20 or more years.) Many of us work out over time some of the things we do that are guaranteed to cause a flare, but those are not the same for all of us. It stands to reason, then, that even if someone did find a way to force their lupus into remission, it wouldn't work for everyone.

So what do we do when we're told about a "cure"?  Today, I lost my temper.  I couldn't cope with this all over again. I've heard too many "cures" and been worn down too much by the snake oil merchants and well-meaning people who didn't even actually know what lupus was.

But you might be more patient when someone tells you about the cure they heard about or that worked for them.  You might even be interested in trying it.  I'd recommend discussing it with your doctor first, to check that whatever this is won't actually be dangerous.  If you really want to try it, and your doctor can assure you it won't make your lupus worse, or do some other terrible thing to you, go with it and good luck to you.

If you do try some "cure" and it doesn't work for you, don't blame yourself or think you did something wrong.  Lupus is an incredibly complex disease, which affects people differently.  In life, very complex problems very rarely have simple solutions.





Related Post: What AUST R and AUST L on your medications mean.
Related Post: I'm not going back

Stem Cell Treatments

lupus.cheezburger.com

In the news today, a coroner has blamed some dodgy stem cell treatment for a woman's death.

Her treatment, and the treatment being offered for many other conditions currently, was done by a plastic surgeon, removing fat stem cells and re-injecting them.

There can be some confusion caused here.  There is actually legitimate research into stem cell treatments for all kinds of conditions (including lupus) happening now.  This research is at very early stages, and there's no way yet to know if it will prove a viable treatment in the long term.

The research for lupus is looking at stem cell transplants. This would effectively require killing and replacing part of the immune system.

It would not be done by a plastic surgeon.

Once killing the immune system is involved, it becomes a very specialist, and very dangerous medical procedure.


From my years as a hospital chaplain, I can tell you a little about what happens to bone marrow transplant patients (who also need to have a major part of their immune system killed.)  They spend a minimum of a fortnight in an isolation room of a specialist hospital ward, waiting for their immune systems to rebuild following the transplant.  In this time their lives are at serious risk - either from infection (if someone doesn't follow proper handwashing/gown/glove/mask protocol in entering the room, or enters the room if they have a cold or other infection), and from the risk of their bodies rejecting the donor bone marrow (graft verses host) which can be fatal.

That's the kind of thing most likely to happen if stem cell transplants become an actual treatment for lupus.  It would not be something anyone would take lightly, and not something that could be done at a day clinic, or by a surgeon who wasn't a specialist in the field.





References:

ABC Background Briefing: Hallmarks of 'quack medicine' in fatal stem cell treatment, coroner finds http://www.abc.net.au/radionational/programs/backgroundbriefing/hallmarks-of-quack-medicine-in-fatal-stem-cell-treatment/7630288

Lupus Foundation of America: Stem cells and lupus research http://www.lupus.org/research/stem-cells-and-lupus-research

WebMD: Stem cell transplant for lupus topic overview http://www.webmd.com/lupus/tc/stem-cell-transplant-for-lupus-topic-overview

Beware!

The content of this post has been removed, after a check with the Pharmaceutical Goods Administration confirmed that the product is not approved for use.

There are legal implications in anything that could be seen as promoting a non-approved therapeutic product.

Comments have also been removed, and no further comments will be published.

Be Healed!

I was approached by a teenager in a shopping centre the other day,  boy who wanted to pray for me so I could be healed.

Now, I put that up there with "if you had enough faith, you'd be healed", or the non-religious version that says "a positive attitude, more exercise, etc, is all you need."  What both the religious (and it's not just Christians, I have to say in defence of my own faith), and the non-religious versions are both basically saying is that if you're sick, it's your fault.

I don't buy into that. I told the kid I'd been a hospital chaplain for over a decade and was well aware that lots of people could be healed, and most often, God chose to work through doctors.

The kid said he knew doctors were great for people who didn't have faith. (He also told me he'd already cured one person, he prayed for her and then she could see without her glasses.)

Do you see something here that looks like waving a red flag in front of a bull?

No, I didn't rip the kid apart.  I told him he could pray all he liked, but already knew the answer would be no.  God's not a puppet, and if God really wanted to miraculously cure me, God could just do it.

Before I managed to ditch the kid, who hung on like a limpet, he did ask one sensible question: "Why would God say no?"

Actually, you've got to turn the question around a bit to make it sensible: "Why would God say yes?"  Why would God create a complicated set of natural laws and then just throw them out the window for me?  Well, God didn't, hasn't and won't.  And if I had to be honest, that's fine by me.  If God kept suspending the rules of nature here and there, for one person or another, can you imagine what the world would be like?  Oh we'll just interrupt gravity so this person falling off a cliff won't get hurt. We'll run time backwards for a while in response to that person's prayer. We'll cancel all disease, and then there'll be no reason for people on this already-overcrowded planet to die.

Really, I like the laws of nature, just as designed. They work.  (OK, climate change is showing us we can mess them up, but in that case it really is our fault.  I'm pretty sure that verse in Genesis that gets translated as "subdue" the earth, meant "I'm putting humans in charge, you're responsible for this world," not "Go and destroy everything.")

For a healthy teenaged kid, being sick, old, or disabled must seem like the worst thing that could possibly happen.  Of course the kid would have to have limited imagination and pay no attention whatsoever to the news.

Sure I have bad days. I can be in varying amounts of pain. I can go through varying amounts of fatigue.  I can have scary bouts of confusion and forgetfulness.

But even with all of that, there are good things.

The best thing is I have lived long enough to see my children become adults, that's all I really asked for and hoped for. There's lots of amazing, incredibly strong, wonderful people all around the world I've come to know because we share this battle.  And all of those people are well worth knowing.  I have time to write, to sew, to do art, to drink coffee with friends, and play nonsense games with my granddaughter. I have a home that's perfect for my needs, and my family's needs.  I have a doofy dog who makes me laugh, and a smoochy soft rag doll cat.  When all else fails, I have quite a comfortable couch to sleep on in front of the TV and try to sleep off the worst of the fatigue.

And I have good days.  On good days I can do absolutely anything,  even tolerate a kid who thinks he can heal the sick in the marketplace.

If It Doesn't Come From Someone Who Is Qualified, It's Not Real Medical Advice

I recently saw an article being shared around Facebook.  It said people with lupus shouldn't take
chemotherapy drugs.  Who was the person who had the expertise to write this? Was it a world-renowned rheumatologist? A medical researcher?

 The author's name tugged at my memory.  He was featured on an episode of The Checkout not all that long ago. His job was selling blenders on an infomercial.  He did claim some medical expertise on the basis that his parents were doctors. My father was an electrician, but that doesn't qualify me to rewire your house.

Hopefully, most lupies didn't fall for that.

I fell for something similar a few years back.

I went for a regular eye test, and filled in a form for a new optometrist which included all my medication (plaquenil being one medication I was taking.)

The optometrist told me I the plaquenil was damaging my macula and I should stop taking it immediately.  I said I had an appointment with my rheumatologist in a couple of weeks, I'd talk to him about it.  The optometrist said something along the lines of: "You could wait that long, but only if being able to see isn't all that important to you."

I stopped my plaquenil. By the time I saw my rheumatologist, my lupus was flaring.

The rheumatologist sent me to am opthalmologist.

The opthalmologist (eye specialist) told me two important things: firstly, I did not have a macular problem at all, and secondly, plaquenil maculopathy was so rare that most optometrists wouldn't recognise it if they saw it.

I never went back to that optometrist again. I did, however, see the opthalmologist every year while I took plaquenil, just in case.

So that's general advice from someone who doesn't know, specific advice from someone who didn't know,  what other advice do we get?

There's always the friendly advice:  "Don't let lupus control you, just get out and do what you want to do."  Fine, but right now I'm in agony and exhausted and all I want to do is take some pain relief and go to bed.  "You need something to boost your immune system."  Yes, well my immune system's trying to kill me, so I don't want to give it any help.  "You just need to get out in the sun more." Do you have any idea what happens to me when I go out in the sun? "You need more exercise."  Exercise causes me a lot of pain and can trigger a flare, I do what I can, but I can't push it further. "You should take some B12." If it shows up lacking on my blood tests, my doctor will tell me and then I'll take it.

Then there's TV doctor advice.  Some of the people who play doctors on TV talk shows might actually be qualified as doctors, but there's no guarantee. If they give general advice, even if it might be good for some people, no two people are the same, and lupies find we all have different experiences and different medications that help.  General advice is not a replacement for your own doctor's advice.

I'm not saying there's no reliable information around.  There's rheumatologists who blog, there's really good reference books, like Dr Donald Thomas' Lupus Encyclopaedia. Check who's giving the information, and what their qualifications are.  A practicing rheumatologist should have a current working knowledge of treating lupus.  But these are for general information.  I'm sure rheumatologists who blog or write books would be the first to say that reading their work  is not a substitute for seeing your own rheumatologist.  Rheumatologists writing on the net and in books can give you information, tell you about what tests mean, warn you about the side effects of medication, but they haven't seen you and they haven't looked at your test results and they don't know what is the best treatment personally for you.

So what I'm saying is, accept information from informed sources (but check that those sources are informed), but when it comes to actual medical advice about your actual treatment, check with your doctor.

Lupus Survey

Hi Lovely Lupies,

Can you help me out for one of my projects for World Lupus Day this year?

Please fill in the survey on this page, and ask all of your lupie friends to do so as well?

The more people who fill it in, the more useful the information can be.

The survey closes on 9 May, 2016, and I'll share the information learned from it the next day.

Thanks in advance,

Iris.

(PS, Keep an eye out for more World Lupus Day projects you can help out with.  This May, as well as World Lupus Day, I'm celebrating my 50th birthday, and the 5th anniversary of starting this blog.  It's a big year for me, and I want to do some exciting things.)




Update: The Survey has closed. You can read the results here.

Lupus True and False Take the Quiz

Lupus True or False

Lots of myths surround lupus.

Can you tell the difference between the myth and the reality?

1. The cause of lupus is known.

True
False


2. Lupus has periods of inactivity, but never really goes away.

True
False


3. Lupus is frequently accompanied by other autoimmune conditions.

True
False


4. Lupus is contagious.

True
False


5. Only women get lupus.

True
False


6. Lupus is the same as AIDS or HIV.

True
False


7. You can fix lupus if you "boost your immune system".

True
False


8. Lupus can affect any organ of the body.

True
False


9. Sore joints and fatigue are common symptoms in lupus.

True
False


10. A person with lupus just needs to buck up, do more exercise, and get some sunlight.

True
False


11. Lupus is "all in the head", so just get over it.

True
False


12. You can tell by looking at someone if they're really sick.

True
False


13. Many lupus patients minimise their symptoms so as not to trouble those around them.

True
False


14. Lupus always presents with a "butterfly rash" on the face

True
False

How did you go?







Want more information?


1. Researchers are working on it, but there's still more questions than answers; 2. Lupus can flare and then become inactive, no-one really knows why it comes or why it goes, or why it comes back; 3. Many lupies also have symptoms of fibromyalgia, sjogren's or a number of other conditions; 4. We don't know what causes it, but we know you can't catch it from someone else; 5. About 10% to 20% (depending on which source you read) of lupies are men;  6. In AIDS/HIV the immune system is not active enough, in lupus, it's over-active; 7. If the things that are meant to "boost your immune system" actually worked, they would make lupus worse. Treatment for lupus frequently aims to suppress the immune system. 8. Sad, but true. It's also unpredictable. 9. It's something lots of lupies complain about.  10. Sunlight can make lupus worse, and too much exercise (and the wrong type of exercise) can damage inflamed joints. 11. Lupus is real, and really is life-threatening; 12. Lupus is one of many "invisible illnesses" many lupies don't look sick. 13. We really don't want to worry everyone around us, so if we complain that it's bad, it's incredibly bad;  14. Sometimes it does, sometimes it doesn't, and it can vary from day to day with the same person.

It Makes No Sense

Sometimes, things that happen make no logical sense.

I read yesterday about an issue medical researchers are having with placebos.  Apparently, the placebo effect is becoming stronger, making it harder to test new drugs properly.

A placebo is an important part of testing any new medication.  People in medical trials are either given the actual drug or a placebo (fake - that shouldn't do anything).  If more people get better using the actual drug than using the placebo, it indicates the drug's doing something worthwhile.

There's always been an issue with the placebo working for some patients, even though it really shouldn't.  Now, at least over in America, the placebo is working for more and more patients, affecting the results of medical trials.

It has me wondering about other things I know work for some people, but probably shouldn't.

For example, there's no reason the Paleo Diet should make people healthier.  It's been criticised by nutritionists and scientists.  But I know someone who has lots heaps of weight using it, and her lupus is far better controlled than it was before she started using the diet.  She feels good. (And this particular lovely lupie had been extremely sick.)  For her, it clearly worked, whether there was any reason it should have or not. That doesn't necessarily mean it will work for everyone else, or even anyone else.  But it works for her, and for her that's fantastic.

Again, I frequently hear from someone who tells me how great low dose naltrexone is.  For that person it apparently worked.  It's not an approved treatment, and there doesn't seem to be any actual clinical studies to back it up.  But there's anecdotal evidence that for some people, it apparently works.

The one I most struggle to believe is the woman I heard of who "cured" lupus by giving up coffee.  I would never, ever try that.  It's a sacrifice I just am not willing to make.

So where does that leave us?

We all constantly hear about alternative treatments, diets, "cures", whatever else.  A lot of it is snake oil.  And much of it none of us would ever want to try.  But if you hear of one that does make sense to you, talk about it with your doctor.  (Remember, sometimes alternative treatments can have bad interactions with the medications you're already taking.)

If it's not got any way of making things worse,  maybe some of it is worth a try.  Who knows? You might be one of those people that something works for, even if there's no known reason why it should.

We're all different.  The medications that work for some lupies don't seem to work for others.

Maybe if the placebo effect keeps getting stronger, none of us will need actual drugs one day.  I suspect that day is a very, very, long way off.

Until then, I'll just stick to what my doctors have told me to do and to take, and not ask about trying anything else.  This is more than enough for me to handle.



Reference: Science Alert, The 'placebo effect' is getting stronger with time. http://www.sciencealert.com/the-placebo-effect-is-somehow-getting-even-better-at-fooling-patients-study-finds

Science-based Medicine: Low Dose Naltrexone: Bogus or Cutting Edge Science? https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/

ABC Science, Paleolithic diet doesn't weigh up. http://www.abc.net.au/science/articles/2013/09/10/3842158.htm

Ranting About Rip-Offs

I was reading yet another news article about the Belle Gibson scandal, and wondered what lessons there are in the whole mess for those of use who are sick, and who spend a lot of time online.

These are the things that jumped out at me:

• Someone being pretty is not necessarily the same as them being believable. (Despite what the advertising industry may have spent our whole lives trying to condition us to believe.)
• Not everything on the internet is trustworthy, no matter how well it is dressed up.
• There's no shame in admitting to having been tricked by a fraud. Some frauds are so good they convince themselves.
• If a "cure" or "treatment" seems miraculous, or too good to be true, it probably isn't true.
• The internet is a great place to go to for support, to be able to see how others have handled the challenges we face, for a sense of community.  It's not a substitute for a doctor.
• If anyone ever tells you to not follow your doctor's instructions (unless they're saying get a second opinion - which is appropriate any time you feel unsure); you should find alarm bells ringing.
• If someone tells you "big pharma" or "big medicine" is only out to make money out of you, and they're trying to sell you a product (or multiple products, usually ridiculously expensive) of their own, alarm bells should be ringing.
• Journalists can sometimes be taken in by a believable fraud, the same as everyone else.  Talk television and radio programs, and non-news magazines, are less likely to check their sources than serious (or "hard") news services.
• A tiny bit of truth (or a little bit of preliminary research, taken out of context) can be stretched into a dangerous myth.
• Human beings are mysterious, complex creatures.  We don't always know what motivates a person.  Not everyone's motives are good.
• It can be hard enough assessing another person's trustworthiness when we meet them face to face - it's even harder on-line.
• That prince in Nigeria isn't really going to send you a million dollars in diamonds; the unclaimed inheritance in England isn't really coming to you; and you cannot replace your medication with superfoods.  In fact, don't replace your medication with anything, unless you discuss it with a doctor first. 
• A healthy balanced diet is a great thing for pretty much everyone, and should improve your overall health.  On its own, it won't cure cancer, or lupus or anything else.  Eat healthy food because it's good for you, not in expectation of a miracle.
• Miracles may well happen. (In fact, in hospital chaplaincy, I'm sure I witnessed a few.)  But they're "miracles" precisely because they're not supposed to happen, and not expected to happen, and completely unpredictable.  You can't recreate a miracle.  If someone recovers against all odds, that doesn't mean that everyone who tries to copy them will have the same result.
• When people are desperate enough, they will try anything (note, the "slapping therapy"stories in the references.) Be aware there's always someone out to make a quick buck from someone else's desperation. 
• Now that I've digressed to the "slapping therapy"; I suspect that if those parents had gone to the doctor who was treating their son's diabetes and said: "Would starving our young child for three days and then slapping him to read his bruises help with his diabetes?"  I'm fairly sure the doctor would have explained the difference between a diabetes cure and child abuse. Ask your doctor, no matter how convinced you are from your own reading. 

I know there are many people who will feel hurt over Belle Gibson deceiving them, many confused, and quite a number outraged about the money not getting to charity, and the possibility that people may have died unnecessarily by following her recommendations.  But the issues this situation raises are much bigger than just one blogger running a scam (or suffering Munchausen's - the jury seems to be out).

The bigger questions are about things like who to trust, how much of what we read we can believe, how to recognise a fraud, and how we will use information we find.  The more time we spend on the internet, the more often we will have to face those questions with regards to what we're reading.

References:
 http://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantry?CMP=soc_567

http://www.news.com.au/lifestyle/health/belle-gibson-no-none-of-it-is-true/story-fniym874-1227315232565

http://www.theage.com.au/comment/belle-gibson-is-only-the-latest-in-a-long-line-of-hucksters-peddling-bad-science-20150427-1muqet.html


http://www.mamamia.com.au/news/slapping-therapy-death/

http://www.news.com.au/national/aidan-fenton-7-vomited-and-died-after-slapping-therapy/story-fncynjr2-1227329512272?utm_content=SocialFlow&utm_campaign=EditorialSF&utm_source=News.com.au&utm_medium=Facebook

What Does Sick Look Like?

Lots of people will say, "You don't look sick" or "You look well", to lupies.

Most of the time, they're trying to be nice, and I accept it as a compliment of sorts.

I know, however, that many lupies get sick of being expected to either "look sick" or "act well".  There's some sort of belief that only people who look sick really are.

I actually go to a lot of effort with make-up to try to not look sick.  When the make-up's off, people who know me can tell when my lupus is flaring, or when I've done too much.

I get a light pink "butterfly" rash on my face.  It's not really severe, and you'd have to know me to notice it.  Some lupies have strong red rashes, and some even hurt.  Of course there's also some lupies who never get a rash, or any other visible sign of what's going on in their bodies.

Lupus is different for everyone who has it.

You can't judge a book by its cover, or a lupie by her (or his) appearance.

If someone you know has lupus, and they say they can't manage something, they probably can't. Even if they look perfectly healthy, they'll have limitations on how much energy they have and what they can achieve with it.


Related post: Ask An Expert: Concealing Lupus Rashes

"Expert" Advice

Sometimes I wonder if I am some kind of a freak.

You see, I go to actual doctors to deal with my health issues, rather than Google or television talk shows. And I do what my doctors say to do.

I'm starting to think that makes me a freak, because, there are so many experts around now, who know everything about my condition. They know that if I ate a healthier diet, had a positive attitude, or ate the latest superfood featured on some tv talk show, I wouldn't be sick.  I don't need those dangerous drugs I take.

Really, the drugs I take are dangerous.  That's one of the reasons I regularly see doctors so they can make sure the drugs are doing more good than harm.

That's me. I'm a freak.  If I trusted the internet, I could be like all the experts who give me advice.

People don't even need to know what's wrong with me to be an expert on my condition. For example, the latest random person to see my profile on a social media site and fall in love with me (yeah, that happens) asked me what I do for work. I explained I don't work as such any more. I'm on a disability pension, but I blog and write indie books as something to do with my time. He told me he was sorry about what had happened to me but I needed to get over it and move on.  That was great advice, from someone who didn't know what had happened to me or whether or not it was still happening. Then he asked me what I was looking for in a relationship. I explained in no uncertain terms that I'm actually happy with my life and not looking for a relationship. (And if I were, it certainly wouldn't be with someone who would tell me how to live my life without knowing anything about it.)

I've also been told that people with autoimmune diseases cause them ourselves. If I stopped making myself sick, I wouldn't need all my drugs.

Then there's the diet thing.  Every week there's a new "superfood" which is another name for an ordinary food with a lot of marketing money behind it. If it's not a single superfood, it's a whole diet, or an exercise program.

There's also the "big pharma doesn't make cures, it makes patients" thing.  Usually the people who promote this one, then go on to promote "natural" therapies - made by the big "natural" pharma companies. Like big pharmaceutical companies, the big "natural" pharmaceutical companies are actually in it for the money - the only difference is they don't have the strict regulations about things like proving their products do something.

After all of the advice I get so often, I have to admit, I am recalcitrant.  I choose to continue to be a freak.  I keep going to actual doctors, and I keep following their advice. So I keep taking dangerous medications.

Myth: Antibiotics Cause Lupus

I thought I'd heard just about every ridiculous myth out there.  But twice recently, I've heard one that's new to me. It's the myth that antibiotics cause lupus.

How do people come up with this theory?

Most people who have lupus have had antibiotics at some time in their lives.

That's like saying most people who have lupus have had baths some time in their lives, so baths cause lupus; or that most people who have lupus have seen a dog some time in their lives, therefore dogs cause lupus.

Most, probably all, of the whole population of Australia over the age of about two or three has had antibiotics at some time in their lives. If antibiotics caused lupus, then all Australians would have lupus.

Maybe the argument can be further put that people were sick when they started taking antibiotics - but the whole reason to start taking antibiotics is that one is sick.... and again, the vast majority of people who have taken them do not later have lupus.

Perhaps some people are diagnosed with lupus shortly after taking antibiotics - and it's conceivable that a lupus flare could have been misdiagnosed as a bacterial infection, and antibiotics given which then wouldn't have cured the flare, because they're only useful against bacterial infection.

It takes a while to diagnose lupus.  I lost track of the number of times I was tested for diabetes, Ross River fever and dengue fever over the years before I was finally diagnosed.  At some time in those years, I would also have had tonsillitis, sinusitis, chest infections, etc that would have all been treated with antibiotics. That doesn't mean that antibiotics caused my lupus, just that lupus wasn't the only thing happening with my body.

I understand the desire to find something to blame, some reason to explain what is happening.  But lupus is one of those mysteries, that we don't yet know the cause of. Researchers have found a gene, roquin, that is linked to lupus, but there is still a long way to go to say something is a definite cause of the disease.

Antibiotics are important in the treatment of bacterial infections.  Making someone with pneumonia, or a similar condition afraid to take the treatment that could save their lives will not help reduce the incidence of lupus or other autoimmune diseases.



Further reading about roquin:
http://www.sometimesitislupus.com/2013/05/towards-cure.html

Misconceptions

I am so glad of the friends and family God has given me.  My kids and my friends are all very
understanding and make all kinds of allowances for my condition.

I'm also blessed with a wonderful church congregation.  Even though I'm no longer able to do the part time work I had been doing with them, they still accept and love me and are happy for me to do whatever I am able.

But I hear constantly from other lupies who tell me how horribly they have been treated, because of the misconceptions people have about our condition.

So here's some of the stuff I've heard, and the truth that goes with it.

Misconception: That you can see disabilities, therefore someone who doesn't have any visible disability shouldn't park in a "disabled" parking spot.

Example: People with lupus and similar conditions (who legitimately have disabled parking permits), have been subjected to verbal (spoken and written) abuse from people who have seen them leaving their cars and decided they were "taking a disabled space from someone who really needed it.)

Truth: Lots of people with lupus, rheumatoid arthritis, and many other "invisible" illnesses do have disabled parking permits.  They can only get those permits if their condition is severe enough to warrant it. (Many of us don't qualify.) Still, many of them will only use the permits on "bad days", and will park in a regular parking spot if they feel at all well enough to walk the extra distance.

Misconception: That people with illnesses like lupus, "do this to yourselves."

Example: The person who tells a lupie they've read a book that says all autoimmune diseases are self-inflicted and you can think or will yourself out of this.

Truth: Lupus is a real illness. You can think yourself out of it as much as you can think yourself out of malaria or meningitis or AIDS or breast cancer.

Misconception: It's not healthy to take all the drugs that lupus patients take.

Example: The person who tells a lupus patient. "All those drugs are dangerous. You should stop taking them, they're making you sick."

Truth: Lupies know the drugs we take are dangerous. So do our doctors (believe it or not, our doctors went to doctor school, they know drugs have side-effects.) So, with guidance from our doctors, we weigh up the risks of the drugs against the risk of untreated lupus: pain, fatigue, organ failure, slow agonising death.  If one drug's side-effects really do make things even worse than the benefit we get from it, we usually go back to our doctors to look at alternatives.

Misconception: There'd be a cure if there weren't so much money in the disease.

Example: The oft-quoted statement, "the pharmaceutical industry creates patients, not cures."

Truth: The pharmaceutical industry may be working on some lupus treatments, but a lot of other independent organisations, such as universities, are also working on treatments, understanding the condition, and hopefully, one day, a cure.  Lupus wasn't created by the pharmaceutical industry, but until drugs were found to treat it, it was a death sentence. Now, for most of us, it's just a life sentence. But researchers are finding ways to cure all kinds of other diseases, so there's no reason to suppose we won't eventually get a cure as well.

Misconception: "Alternative medicines" all have pure motives while "Big Pharma" is in it for the money.

Example: "You should take an alternative instead of all those drugs.  The pharmaceutical companies are just out to make money from you."

Truth: A lot of the "Alternative medicine" companies are huge, and make a great deal of profit the same as the prescription medicine producers. (Take a look at mega-companies like Swisse.) All businesses want to make money. At the same time "alternative medicine" is far less well regulated and policed than "medicine". (See the video from "The Checkout" below.)

Misconception: A better immune system would fix it.

Example: "You're sick all the time, you should take something to boost your immune system."

Truth: Lupus and other autoimmune diseases are caused by an over-active immune system. My immune system is so worked up it's attacking me!  And you want to help it? (And, by the way, many of the things people take to "boost their immune systems" have either not been proven to work, or been proven to definitely not do anything of use.)

Misconception: You need more sun exposure.

Example: "You should get out in the sun more.  It's unhealthy to be inside all the time. You need vitamin D."

Truth: Yes, we do need vitamin D. That's why so many people with lupus take vitamin D supplements - because our doctors (I told you they've been to doctor school and know this stuff, know to check our blood tests to make sure our vitamin D levels are properly regulated.)  We do it this way because sunlight, in fact any ultraviolet light, can give lupies rashes, and make us sick.

Misconception: Lifestyle changes can cure lupus.

Example: "My  daughter's friend's cousin cured her lupus by giving up coffee."

Truth: I haven't tried giving up coffee - I've had to give up so much that I'm refusing to give up that one pleasure.  Besides which, with my fatigue levels, if I didn't have coffee I'd never be able to get out of bed.  Lupus is incurable - for now. Researchers are working towards a cure. But in the meantime, no, giving up coffee will not cure lupus. Reducing stress will not cure lupus. Losing weight will not cure lupus. Gaining weight (for those lupies who are underweight) will not cure lupus. Standing on your head in the corner for an hour a day will not cure lupus. Running a marathon will not cure lupus - but trying it is likely to cause a severe flare.)

Misconception: We make it up, or make it out to be worse than it is.

Example: "You're not really that sick, you're just trying to manipulate everyone."

Truth:  OK, my ex-husband thought I was incredibly lazy, but I divorced him long before I finally got a diagnosis. Living with lupus is a nightmare.  It means constant pain and constant fatigue, when it's mild.  In more severe cases it causes organ damage and failure, even death.  It means never knowing from day-to-day whether you will have the energy to get out of bed, never being able to make plans and being confident of keeping them. No-one would make this up.  No-one chooses to live this life.  The lupies I know dream of feeling "normal". We might look like we're fit and healthy - but looks can be deceiving. 

Article reprinted from The Conversation, an expert look at "superfoods" and health.

Superfoods: not so super after all?

By Emma Beckett, University of Newcastle and Zoe Yates, University of Newcastle
Superfoods is a buzzword now part of mainstream food and health language, often touted as miracle foods that cure all ills, stave off ageing and disease, or aid weight loss.

In practice, superfoods are more readily evoked when it comes to exotic and ancient fruits. Goji berry and acai berry, for example, or pomegranate and mangosteen are all famously regarded as being super. Liver is actually more dense in nutrients than any of these foods, but have you ever heard it called a superfood?

As you may have guessed by now, superfood is not a scientifically or technically defined term. It’s not a word that medical professionals or researchers really use. Indeed, it has little meaning in the medical research community.

Nonetheless, enter superfood in any internet search engine and it will return millions of hits - mostly from news, magazines, blogs and sales sites. Repeat the search in the US National Library of Medicines online database of biomedical research publications, PubMed, and you get a grand total of three hits along with the helpful suggestion that you may have, in fact, intended to search for “superfund”.

But that doesn’t mean there’s no scientific research into superfoods. Researchers just don’t call them “super”. And there’s a good reason for this: the giant leap from testing foods in the lab to their amazing marketed powers is simply too far to be scientifically or ethically sound.

Just because a component of a superfood may kill cancer cells in a dish in the lab doesn’t mean that eating lots of a food containing this component will prevent you from getting cancer.

What’s more, the assumptions behind superfood science can be problematic. Much of the available evidence comes from cell culture or animal models. While these models are good tools for scientists, they don’t automatically apply to humans.

Humans have considerable environmental and genetic variances that make us much more complicated.
Even when these studies are done in humans, they’re often tested in very high concentrations over short durations that are not reflective of regular balanced diets. There simply aren’t enough long-term, realistic studies to support the claim that superfoods can stave off illness or old age.

It’s easy to see why the concept is popular; being able to superfoods that protect you from all kinds of harm are a seductive notion. But the idea may be doing more harm than good. At best, it’s a misleading marketing tool, at worst, it may encourage bad habits.

Superfoods can give people a false sense of security, letting them believe that they can somehow balance out other unhealthy habits.

The prohibitive cost of superfoods is also an issue. The average price of “super” berries such as goji and acai is tens of times higher than humble raspberries, blackberries or apples. But they certainly don’t have ten times the nutritional value.

A common feature of superfoods is that they contain large amounts of antioxidants.

Antioxidants protect cells in the body from free radicals, which are reactive molecules originating from sources such as cigarette smoke, processed foods and normal metabolism. Too many free radicals damage cells, leading to age-related diseases, such as cancers.

Most of the research on the health benefits of dietary antioxidants comes from cell and animal models. This research is, again, not necessarily transferable into the regular dietary context.

The studies that have been done in humans generally show short-term elevations of antioxidants after consuming particular foods in very high concentrations, as you would expect. Avoiding sources of free radicals to start with is probably more beneficial than trying to balance them out with antioxidants.
Nutrients are clearly important for good health but seeking out large doses from any one source is not likely to be beneficial. Simply having more of a particular vitamin or mineral is not necessarily better.
Indeed, too much can sometimes be just as harmful as not enough. Also, the body cannot store certain nutrients so there’s no benefit in consuming large amounts of them; they will only be expelled as waste.
A fixation on superfoods can distract people from the benefits of healthy everyday foods. What most western diets are lacking is not any one super source of nutrients, but variety. Everyday fruits, vegetables and whole foods each have their own unique nutrient profile and contain individual factors that can be said to promote health and wellbeing.

No single food item, or even the top ten superfoods combined, have enough superpowers to replace a balanced, varied and healthy diet. Couple this with avoiding excessive consumption of processed and refined foods and alcohol, and you will have done everything you can, nutritionally speaking, to help you stay healthy and well into old age.

Emma Beckett receives funding from CSIRO (CSIRO OCE PhD Scholar)
Zoe Yates does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.


This article was originally published at The Conversation. Read the original article.


I've reprinted this article because, while it's nice to think that there is hope in miracle cures, and foods with special properties, no single food or supplement is going to do all the things people claim "superfoods" do.  Nothing replaces a healthy balanced diet, whatever moderate exercise you can manage, and taking your medication.

Reliable Information

There's a lot of information about lupus on the internet.

Some of it's reliable.  Some of it is anything but reliable.

When I trained to be a journalist, I was taught to check my sources.  Not all sources of information are equal, especially when it comes to issues of health.  In fact, one Australian television station was recently in trouble with the broadcasting watchdog for getting this wrong.

You will notice, that when I'm giving you information, not just my opinion or personal experience, I'll actually say what my sources are. That's so you can check for yourself to see how reliable my sources are.

Sometimes, my sources will be as hyperlinks in the text of the post, and sometimes, I'll list them at the end of the post.

So how do you tell, when you're doing your own research, who is reliable?

Firstly, most things issued by government health departments can be considered reliable.  An example would be http://www.healthinsite.gov.au/a-z-topics  that  ".gov" in the url tells you that it's a government site, and the information provided should be reliable, and should also be independent of any commercial influence.

Another group of sources which should be reliable are official lupus organisations.  An example is the Lupus Foundation of America site:  http://www.lupus.org/newsite/index.html.  You find this out by going to the site, and reading at the top of the page or the "about" section of the site, to find out who the people producing the information are.  An official lupus organisation will normally have access to experts.

Another group of reliable sources is that of experts in the field.  With regard to lupus, experts would be rheumatologists, or perhaps immunologists.  For example, if you go to http://www.arthritissupportboard.com/, you read that it's written by Dr Shashank Akerkar - a consultant rheumatologist.  Since rheumatologists are specialists who deal with lupus, you can assume the information he gives is reliable.

Those are your most reliable sources for information.

Patient blogs, support pages, etc are lesser sources of information. That doesn't mean they're not good.  It means they are shared experience.  They're not necessarily scientifically tested data.  They're opinion, anecdotes about things that worked for one person but may not necessarily work for anyone else.  Their real value is that we feel less alone when we read that other people are going through similar things to ourselves.  Chronic illness is an isolating thing.  Just knowing that there are people out there who understand makes a huge difference.  These are not a source of medical advice or information.

And the least reliable source of information? Pages that are trying to sell you something.  The page that tells you everything will be better if you buy this super amazing supplement for only $99.99 plus shipping and handling, is going to be giving "information" that's been slanted to make their product look better. The site that says this diet will fix everything (and has no scientific proof to back it up), is just someone's opinion.  And if anyone tells you that you need a product to "boost your immune system", point out to them that your immune system is trying to kill you and you don't need to help it.

But wherever you do your research, remember your primary source of information is still your doctor.  Never change anything in how you treat your lupus (or any other health condition for that matter), without discussing it with your doctor first.

True or False?

How much do you know about lupus? Answer these ten true or false questions, then scroll down past the pictures to see if you have the answers right.

1. If it's diagnosed early, lupus can be cured.
2. Lupus is more common than breast cancer.
3. Lupus is never fatal.
4. Lupus can be prevented.
5. You can't tell how sick a lupus patient is by looking at them.
6. Only women get lupus.
7. Children can get lupus.
8. Some of the drugs prescribed for lupus are actually chemotherapy drugs used for cancer, and antimalarial drugs.
9. Lupus patients should stay out of the sun.
10. Improving nutrition will cure lupus.

1 - False. Lupus is (so far) incurable. Hopefully, medical research will eventually reach a point where lupus can be cured. 2 - True. Lupus is far more common than many people realise. 3 - False, lupus can cause organ failure, causing death. 4 - False. The cause of lupus is still unknown, so there is no way to prevent it. 5 - True. Most of the symptoms of lupus are invisible. False - 10% of people with lupus are men.  7 - True.  Lupus does not begin at particular age. 8 - True. Very few lupus drugs were specifically developed for lupus. 9 - True. Many lupus patients are photosensitive and can get rashes or full-blown lupus flares from sunlight. The ultraviolet light in fluorescent lighting can also affect lupus patients, so sun protection is even important inside and at night. 10 - False. Good nutrition is always a good idea, but it will not cure lupus.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Oh, I Don't Look Sick?

The Health Activist Writers' Month Challenge question for today was about the most outrageous thing anyone has said about my health condition.  Well, I've had a few rants about this topic before, so I thought I'd check with some other lupies, and asked on Twitter, Facebook and Google+.  I started out by answering each comment individually, but I couldn't keep up with them all.

I'm not going to re-post everyone's individual comments, because you'd be reading all day.  But there were some definite themes that came through.

Let's take a look at some of them.  Lupies, try not to get too angry.  Remember the people who say these things have no idea what they're talking about.

Theme 1 - It could be worse.

This covers the "at least you don't have cancer", "I know someone who is so much sicker", "at least it's not..... (name any condition you like)" or the one that really got to me someone was told "at least you don't have a chronic illness."

Well, do you know what?  It doesn't matter what happens to anyone, it could still get worse. You could lose your leg in an accident, and it would still be better than losing both legs.

Let me tell you, from personal experience, and from years of hospital chaplaincy listening to patients tell me what upsetting things other people have said to them, and from spending time with other lupus patients - being told things could get worse is not at all reassuring. Many of us are more than aware of the "worse" our particular cases are tending towards. Apart from that, some of the things people think are worse, many lupus patients will actually say they think might be better than what they have.  At least I don't have cancer? Guess what? Some cancers are curable - you get horribly sick while it's being treated, but then it's over gone. Lupus is incurable, even when it goes into remission, we know it's coming back.

Theme 2 - Unsolicited, uninformed, medical advice.

Dr Uninformed and not really a doctor will tell a lupus patient, to give up all those toxic drugs that cause so much harm, and take some "natural" treatment instead.  You're really not sick, you need exercise, or rest, or you can't possibly be allergic to sunlight. It's psychosomatic, all in your head.

The worst one of all, is "you should take something to boost your immune system" - that's really not a good thing to say to someone whose immune system is trying to kill them.

Here's a simple piece of advice to all the would-be advisors: If you don't have medical training, don't give medical advice. Believe it or not, Lupus patients (and other chronic illness patients) go to highly qualified doctors, usually specialists who keep up with all of the latest actual research in the area. All those toxic drugs we take are dangerous, but they keep us alive.

Your supplement, special diet, exercise program, etc, is not going to do the same job as our drugs.

Theme 3 - the cure.

This is a more sinister version of the uninformed medical advice. There is no cure for lupus.

I don't care what you read in a chain email forwarded to you by your cousin's friend's ex-boyfriend's little brother, there is no such thing as a cure for lupus.

Trust me, if it were as simple as giving up coffee, or even a blood transfusion, or bone marrow transplant, our doctors would know about it.

All those people who promulgate "cures" which have no basis in medical science and research, are risking human lives. If you convince one lupie to give up their medical treatment for the cure you recommend and they die as a result, do you want that on your conscience? That's what we're dealing with when the snake oil merchants promote their "cures".

Theme 4 - You can't really be sick

"You don't look sick", and the variables "you're too young to be sick:", "you're too pretty to be sick", "but you look so well" and many similar comments. And there was the guy he was told that he couldn't have lupus because he was male (10% of lupies are male).

Do you know what?

Some of us spend ages carefully working on our make-up to disguise how sick we actually look.

And even if we really look great, you can't see our internal organs, you can't see joint pain, you can't see fatigue, you can't see a headache, unless you look in my mouth you can't see the ulcers.  

If I said I had breast cancer, no-one would say to me, "but you don't look like you have breast cancer."  Do you know what a person with a horribly painful chronic illness looks like? Pretty much the same as anyone else.

Theme 5 - You're getting some benefit from this.

This is related to "you can't be sick" because you look OK or whatever.

Again, if someone has cancer, no-one tells them they're just being lazy, employers don't get mad at them for it, nobody tells them they're just seeking attention.

But lupus patients get told all of these things.

Some people have been known to complain that their taxes are paying lupus patients to do nothing.  Guess what? Everyone I know who has had to stop work because of lupus has hated it. We'd all rather be earning our own income. We don't want to be sick.  And we don't want the attention of being sick, because being poked and prodded by doctors, examined by xray and ultrasound machines, having constant blood tests, etc is really not as much fun as some healthy people seem to think it is.

Theme 6 - You do this to yourself.

Variations on this are that you can will yourself to get better.  (The "Christian" version is if you had more faith you'd get better - that's a poor excuse for theology but I've heard it used.) Or, this is from the artificial sweetener you use (urban myth, it's been disproved), if you ate a healthier diet, if you stopped taking all those pills (seriously), if you lost (or gained) weight, if you got out in the sun (which could be fatal), if you did more (or less), if you got more (or less) rest......

In a society that still often blames victims of crimes, it's probably not surprising that we blame people for being sick.

The causes of lupus are unknown.  There is no evidence anywhere to support the idea that any of us do this to ourselves. There's no causal link such as there is with say smoking and lung cancer, alcohol and cirrhosis of the liver. There's not even the not-quite-proven but widely medically suspected links like marijuana use and schizophrenia.

Theme 7 - You're a burden.

I thought I'd heard everything, until I came across some of the things lupies had been told along these lines.  "You shouldn't get married it would be unfair." "It will be better for your kids when you die." "I married you because I felt sorry for you."

I just asked my 19-year-old son if he thought he would have been better off if I'd died, he said, "No, because then I'd have had to live with Dad and he doesn't even have cable broadband." My son, always practical.

Do you know what? Just because we're sick, doesn't mean people with lupus stop being valuable, worthwhile, human beings. Society has a long way to go towards understanding and being compassionate towards people with disabilities.

This post written as part of Wego Health's Health Activist Writer's Month Challenge.

Is It Snake Oil?

Lupus patients (and people with other chronic illnesses) get so many suggestions from well-meaning people about "treatments" or even "cures" for our condition. Sometimes, it's another lupie, who has had a good experience with a change of meds, and it may well be that something similar will help us, but far more often, it's snake oil.

When I hear about these things, I often check what the actual research is into the background. Often, it's something like Low Dose Naltrexone, or Stem Cell Therapy, that has shown some promising results in early research, but has a long way to go before it's actually proven whether it will be effective or not. Some will be things that had very mixed results in early testing and may actually be dangerous in some cases, such as "Cannabis cures all cancers".  And there will be some, such as mixes of vitamins, etc, that will probably have no effect at all.

Here are some quick ways to identify that something is more likely to be snake oil, than an actual, proven, treatment.

• The has a supporters' website or lobby group, talking about the "miracle" cures: Believe it or not, doctors don't need to be harassed to prescribe proven, safe, treatments.
• The product treats/cures a huge number of unrelated conditions: a panacea (a medication that cures absolutely everything) does not exist.  Different health conditions are caused by different things, so they are cured by different things.
• The statement there's a "conspiracy" keeping the research proving its effectiveness a secret: science, medical or otherwise, doesn't work in secret. (The exception would be weapons research.) Research is published so it can be peer-reviewed and reproduced.  Peer-review means that other researchers study the methodology to ensure there were no mistakes made. Reproduction means that the study is repeated by other researchers to check whether they get the same results or not. 
• The statement that "there's no side-effects": any drug that does anything makes changes to the body in some way.  If the drug does anything at all, it will have side-effects.
• Vague statements of how the product works, such as "it boosts the immune system": real science will tell you the product works on something like t-cell receptors, or increases the volume of white blood cells or something similar. It will be very specific.
• It's an off-label (not approved) use of the drug: unless you're taking part in a properly-supervised drug trial, you need to ask why the drug you're being offered has not been officially approved for use for this purpose. If it's approved in several other countries but not yours, that's one thing, but if it's not approved anywhere in the world, you have to wonder.

Problogger is currently encouraging bloggers to write a "How To" post as part of a group writing project.

Snake Oil

The internet's a great source of information, but it's also a great source of misinformation. A great example of the misinformation is the number "cures" or "treatments" out there that float around the internet - many of which are not actually proven, are in very early stages of research, or may actually be harmful.

As people recommend them to me, I usually research and see if I can find the truth behind the myth.

Here's some I've looked at so far:

• Dr Internet Prescribes Cannabis to Cure Cancer
• Panacea (about low-dose naltrexone)
• New Fat-derived Stem Cell Treatment Restores Lupus Body Functions (promising research)
• Alternative Therapies (about a product promoted as "clinically proven" but no clinical testing had been done)
• Food and Inflammation  (following up from the myths about diet and inflammation)

I think it's important to try to sort the truths from the half-truths and total falsehoods. I understand the temptation to grab on to any hope, no matter how flimsy. In a post-modern world, people's opinions are presented as if they were equal to facts (for example the anti-vaccination campaigns - which are not based on myth  - are often treated as equally valuable as the actual scientific evidence in favour of vaccinations.) 

But when people's lives are in the balance, we have to look at reality - and the person who gave his child cannabis while the doctors were giving the child chemotherapy - really has no evidence at all to support his case that it was the cannabis (not the chemo) that actually cured the child's cancer. The doctors who have cured many other children with the same cancer using the same chemotherapy regimen have a much stronger case to argue that the chemotherapy should continue to be used with kids with the same cancer. 

Very early stage research to say that low-dose naltrexone may have some impact on some autoimmune conditions, does not automatically mean that low-dose naltrexone will cure all autoimmune conditions and should be used instead of all other treatment.

This post was written as part of Wego Health's National Health Blog Post Month.