Cystic Fibrosis is a serious genetic disorder caused by the inheritance of a defective transporter protein. It leads to an accumulation of mucus and fluids in the lungs that can cause progressive scarring and damage to the tissue, and eventually loss of so much lung function that respiration is inadequate, and the victim dies. It's a terrible disease, and it's in the news today because a ten year old girl just received a lung transplant to deal with CF.
If you want to learn more or do more, read the Cystic Fibrosis Foundation website. That's a reasonable source of public health information.
But do not read the Guardian Express.
The Guardian Express has published an article that suggests lung transplants aren't the best option for CF. I just want to say…lung transplants are a last-ditch effort when no other recourse is available; nobody would suggest casually getting a transplant when other precedures are available for amelioration and maintenance. You get a lung transplant when your lungs are on the verge of failing to function.
So this article is talking nonsense from the title onwards. And then you discover why they're arguing against transplants.
The problem is, after receiving a lung transplant, the new lungs do not have CF, but Cystic Fibrosis still exists in the sinuses, pancreas, intestines, sweat glands and reproductive tract, which may find their way to the new lungs eventually.
Let that sink in. CF is a genetic disease. This article is giving out medical advice, written by an author who thinks genes migrate out of the sweat glands into the lungs.
And what does this author suggest in lieu of a transplant? Oregano oil, yoga, rubbing essential oils on your skin, and herbs.
You may be thinking this all sounds terribly ineffective in the face of a disease that destroys the tissues of the lungs. But you'd be wrong. It's an emotional disease, believe it or not.
According to metaphysics and those who study the relationship between our emotions and the body have found a correlating belief for nearly every physical manifestation in form. Often these beliefs are passed down to us from our parents and we aren’t even aware we are carrying them. In those with what is known as cystic fibrosis, this could be the case – as more often than not, individuals are born with this condition.
Louise Hay, a famous proponent for linking emotional causes to physical ailments has written several books on the subject (You can Heal your Life; Heal your Body) after healing herself from serious health problems by addressing her thoughts and emotions. The correlation she places for those suffering with cystic fibrosis is that they have a ‘thick belief that life won’t work for them.’ In order to combat or heal this belief, she offers the daily affirmation: “Life loves me and I love life. I now choose to take in life fully and freely.” If this is a condition you or someone you love is dealing with, perhaps it would be beneficial to look at the emotions behind the dis-ease. We are a whole being, not just a body, and when we can address our problems more holistically we have a greater chance at success.
Holy crap … I thought the article was a solid wall of garbage until that point, but when they stoop to victim blaming and telling people that cystic fibrosis is a "choice", I suddenly find myself sympathizing with those people who believe in a Hell, because I want this person to go there.
But don't worry! They include a disclaimer at the end!
(Information in this article is not intended to diagnosis, treat or cure and is not medical advice, but rather the researched opinion of the journalist. Please discuss options with your health care professional)
The article is full of medical misinformation and medical advice. The disclaimer fools no one, Stasi Bliss, you ignorant fraud.
It's not just this one author, though. The Guardian Express regularly publishes tripe, such as this one about "Organ Transplants Cellular Memory Proves Major Organs Have Self-Contained Brains?".
Organ transplants cellular memory is a premise which exemplifies that our brain is not the only organ that stores personality traits and memories because major organs may have self-contained brains. This is not a new theory because imaginative writers have already written about this concept in the 17th century, which is long before organ transplants were even believed possible.
In our modern culture, cellular memory was first studied in heart transplant recipients when the patients displayed strange cravings, change in tastes, cravings and mild personality. Major organs like the heart, liver, kidney, and even muscles are known to contain large populations of neural networks, which are self-contained brains and produce noticeable changes. Acquired combinatorial memories in organ transplants could enable transferred organs to respond to patterns familiar to the organ donors, and it may be triggered by emotional signals. Science discovered evidence that nervous system organs store memories and respond to places, events, and people recognized by their donors.
When your ideas are supported by 17th century fiction, you have a problem. They do cite one contemporary source: Gary Schwartz, the life-after-death charlatan from Arizona.
Thank you for writing this! As a sufferer of CF, who, believe it or not, is a positive and vivacious person, could not believe that this article was on the top of my Google News. The fact that this article came out as a response to a dying 10 YEAR OLD GIRL getting a lung transplant truly outlines the ignorance and idiocy of Ms. Bliss' (eye roll) 'article'. I believe that homeopathy, exercise, and other remedies can certainly help my ailment (I'm an active runner/adventurer/hiker) but they do not cure it, and never will.
Thank you for being educated and grounded, and brave enough to write this rebuttal. Us CF warriors need more people like you supporting our ranks :)
It looks like the original article was pulled off the Guardian Express site. Now Stasia Bliss has a new pile of woo titled, "Cystic Fibrosis – A Brave World of Hope " found at http://guardianlv.com/2013/06/cystic-fibrosis-a-brave-world-of-hope/
It looks like Bliss wants to double down.
Oregano oil, yoga, rubbing essential oils on your skin, and herbs are all well and good of you have a freaking stress-headache. They are NOT going to help you magically-think your way out of even a comparatively-minor genetic condition like the connective tissue disease my kids and I have, and they are CERTAINLY not going to help you stay alive with Cystic Fibrosis. Shame on The Guardian for that article, even if they did pull it down. SHAME.
How, precisely, does the yoga help with the antibiotic resistant opportunistic pathogens that inhabit and exacerbate the mucous buildup in CF lung tissues? Does oregano oil repair ion transport function? Does your emotional state measurably impact the viscosity of lung mucous?
What an irresponsible load of tripe.
I wonder if there is a herbal remedy for Dunning-Kruger Syndrome.
No, Rosa, they don't. But they definitely think they do!
I just decided to stop having CF. It doesn't seem to care.
As a physician who often deals with patients with CF and other congenital disorders, I can assure you that woo like this has impact only upon the patient's and their family's attitudes towards the disease, not upon the progress of the disease itself. Since patients with long-term, but inevitably fatal diseases do, indeed, benefit from "attitude adjustment" when they may feel that they have some degree of control over its progress, this is counterproductive if they allow the woo to interfere with ongoing best medical management. Some people, like this "author" simply get off on implying that they have an answer that mainline medicine/science doesn't understand or wish to impart to the general public.
I'm so stunned by the stupidity of people... I really did decide when I was 13 that I didn't have CF. That mentality landed me in the hospital. I hope NO ONE takes their advice to heart. Having a positive attitude will make a huge difference in life but surely will NOT cure CF. I live positively and am better off for it...along with taking all my meds. Geez people. Seriously.
the Guardian express is probably being correct, but lets face it if there were no transplants of any genetical disease what chance does it leave us all to continuing surviving in the world at least this 10 year old has a new lease on life and that is more important, yes the c.f. has not disappeared from having a transplant but at least the patient can live until the cure
the Guardian express is probably being correct
Genes do not migrate.
In case it's not immediately clear, the Guardian Express is an Australian paper that has nothing to do with the UK-based Guardian (or Grauniad, if you prefer).
Stasia Bliss -- I'm sure that's her real name! -- gives common sense advice such as eat healthy and exercise and be positive, which are all good choices for people with CF (and I am one). But she mixes in such a large pile of steaming pseudoscience it's hard to take anything she says seriously. This is unfortunately all too common with alternative medicine. Their good points drown in their ignorance.
I've often tried to wish away my CF in the last 30 years, but it never QUITE works! Being positive and doing yoga hasn't done much either, although the yoga is great for my backaches. I always thought (hoped?) that CF--being a genetic disorder--would be immune from cranks and fairy dust, but I guess not!
the UK-based Guardian (or Grauniad, if you prefer)
Cystic Fibrosis is all your parent's fault. There is absolutely no excuse for a single new case of CF. Everyone should get screened *before* conceiving a child. Anything else is playing russian roulette with your child's life.
Why do you mock these ideas? Obviously, the person who wrote that last excerpt has their brain in their tuches.
Wait, is that how you spell tuckus? Tuches? I have been wrong about so many things...
Seriously, thanks for this great post. The only way to fight these kinds of attitudes is to call out the reporters who perpetrate them.
I constantly emailed this weblog post page Cystic Fibrosis is all your fault – Pharyngula to all my contacts, as if like to read it afterward my contacts will too.
First, not sure which makes me laugh more... the article or the comments! The article is so ridiculous that i would abolish "freedom of speech" for people like this! Thanx all u commentors for the laughs! Mayb we could inject the CF gene in2 this guy through a gene transplant???!!!
Oh no! These transplanted hands... they are making me want to kill! I just wanted to play the piano again, but now I have to kill! Muahahahahahahaaahaaaaa!
A letter to the editor of Nature, some years ago, reported research which found that families with a history of CF were 50% more fecund than similar non CF familes. This was after taking into account early deaths from CF, as I recall. The extra 50% of offspring were male.
I also recall reading that individuals heterozygous for CF were not troubled by diarrhea type diseases. Such diseases are a major factor in infant mortality in most of the world.
Can anyone confirm these comments, as my recall is not the best in the world?
Every thing is a double edged sword. No alternative health can not cure CF, but the mega doses of antibiotics and traditional therapies cant either. There is so much confusion regarding natural and traditional medicine. I was on a list to get a transplant and declined it. Decided to relearn all I know about this disease and go that route. Not easy but what choice do I have.
What has worked for me for the last 25 years ( I am 43 and in good health with CF) is a combination of the two blended approach. You have to do all the alternative stuff and the traditional stuff or you are not going to make it with this disease. I struggle daily but persevere, I desperately look forward the next two years with new CF drugs coming out. But guess what I will still practice my alternative health treatments, it is just so much common sense for everyone, everything we eat and do affects our health. One thing with CF the common "prescribed diet" is high fat, sugar, dairy and gluten. That in itself is a recipe for disaster. With CF Longevity was not the mantra but just to gain weight. Now that is not working and it is hard for traditional medicine to do an about face. But the patients can and must take a stronger look at their health and figure out if this is not working take a new tack.
"In case it’s not immediately clear, the Guardian Express is an Australian paper ..."
Um, no. It's American.
Can anyone confirm these comments, as my recall is not the best in the world?
Just google for that letter, with the term site:nature.com/nature somewhere in the search.
but the mega doses of antibiotics and traditional therapies cant either. There is so much confusion regarding natural and traditional medicine.
...Quite. In particular, CF is genetic, not caused by bacteria, so nobody has ever claimed that antibiotics (in any dosage) can cure it.