Showing posts with label research. Show all posts
Showing posts with label research. Show all posts

Tuesday, 5 September 2022

Review: Shade UV Light Sensor

The Shade UV light sensor.  It may not be
the most attractive piece of jewellery
you will ever wear, but I'm pretty sure it will
be your favourite - because it can help
prevent lupus flares.
There are lots of different things that can trigger a lupus flare.  For many, probably most, of us ultraviolet light is one of those things.

Sadly, ultraviolet light is one of those things it's almost impossible to avoid all together.

Biophysicist Emmanuel Dumont, PhD has developed a gadget that helps us control the amount of UV light we're exposed to.

(I've told you before my heroes wear lab coats.  Dr Dumont, and his team are definitely heroes for lupus patients.)

The Shade is a sensor which detects and measures the amount of ultraviolet light we're exposed to each day.

You simply download the mobile phone app, pair the device up with your mobile phone, and attach the Shade to your clothes.

It's held on with a magnet, so it won't leave pin damage in your clothes.  And this is a strong magnet, so even when a small grandchild jumped at me for a hug, it stayed firmly in place.

Each day, the phone app asks how you are feeling.  After a while you can look at your history - how much sunlight exposure you've had each day, along with how you felt, to work out your personal limit.  (Everyone's limit is different. Some lupies can handle more UV than others.)

Once your limit is set, the device will alert you when you've received 20% of your daily limit, or 40%, 60%, 80% and 100%.

As lupus changes all the time, you can change your limit if you notice the relationship between daily exposure and how you are feeling changes.

If you tell the device the SPF of your sunblock, it will take that into account in measuring your UV exposure.

The phone app gives you the option to talk to the Shade team when you have questions of problems. But really, the device and phone app are so easy to use, you probably won't need it.

You can find out more about the Shade, and how it was developed (and you can buy one) here

The Shade won't replace your hat, sunblock and everything else you do to protect yourself from too much sunlight.  But it will give you the freedom to know how much time you can safely spend outside, and a fair warning of when you are approaching your limit.

After a week of using it, I am totally in love with it.  It's not the most attractive piece of jewellery I wear, but it's definitely the most useful. It's a great feeling to know that I can safely enjoy being out in the garden for a while, and know I'm not going to overdo my sun exposure.

If I had a magic wand or multi millions of dollars, I'd provide one for every lupie on the planet. As I don't have the money or the wand, all I can do is encourage you to acquire one for yourself.

Now we just need something to help us control everything else that can trigger a flare....

Disclosure: this is not a paid post, however, I was provided with the device free of charge to enable the review.

Update: More on the Shade Sensor

Monday, 18 July 2022

Stem Cell Treatments

Image: dog with stethoscope.  Text: Trust me, I'm qualified to perform this procedure
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.


ABC Background Briefing: Hallmarks of 'quack medicine' in fatal stem cell treatment, coroner finds

Lupus Foundation of America: Stem cells and lupus research

WebMD: Stem cell transplant for lupus topic overview

Saturday, 7 May 2022

What drugs will we take in the future?

There's always work going on behind the scenes, developing medications, testing, and establishing which get the best results for the amount of money invested.  

Here's some information about recent trials of Acthar Gel, one of the drugs in the pipeline with  Mallinckrodt Pharmaceuticals in America.

New clinical and health economic data from a retrospective analysis of H.P. Acthar® Gel (repository corticotropin injection; RCI) in patients with systemic lupus erythematosus (SLE) discusses whether the use of Acthar in this patient population was associated with reduced hospitalization costs, lower per patient per month medical costs, a reduced rate of hospitalizations, and a reduction in emergency department visits. The analysis was recently presented in a poster session at the Academy of Managed Care Pharmacy 

The study examined administrative claims data from a commercially insured SLE patient population in the HealthCore Integrated Research Database between Jan. 1, 2006, and Mar. 31, 2015. The analysis provides important data regarding the clinical and real-world use of Acthar as a treatment option for appropriate patients with SLE. The study may offer important insight on possible ways to help provide savings to hospitals and healthcare system through reduced hospitalizations, emergency department visits, and other medical costs associated with treating select patients with SLE.

SLE Retrospective Analysis

“Real-world treatment patterns and demographic, clinical and economic characteristics of systemic lupus erythematosus patients initiating repository corticotropin injection therapy” (Wu B, Deshpande G, Tunceli O, Gu T, Popelar B, Philbin M, Damal K, Schepman P, Wan GJ. ABSTRACT M17, page 109.) described the clinical and health economic profile of SLE patients initiating Acthar in a commercially insured U.S. population using claims data from the HealthCore Integrated Research Database4 between Jan. 1, 2006 and Mar. 31, 2015. Among 29,401 SLE patients identified, 29 (0.1%) initiated Acthar, on average, at 23 months after diagnosis and were followed for an average of 24 months. The average age at diagnosis was 45.1 years and 89.7% of the patients were female. The analysis identified medical costs specific to SLE-related symptoms as well as from all causes.

Findings associated with the use of Acthar in this population of SLE patients included:

  • A medical cost offset was observed due to reduced hospitalisation costs, despite an increase in all-cause or SLE-related pharmacy costs after initiation of Acthar, which offset the drug costs by 32%-37%.
  • After Acthar initiation, patients incurred significantly lower per patient per month (PPPM) medical costs specific to SLE ($3,011 vs. $893, p=0.02) compared with pre-initiation period, mainly driven by lower PPPM costs for SLE-related hospitalisation ($2,444 vs. $434, p=0.02).
  • Further, where those same SLE patients incurred medical costs related to all causes including SLE, there was a 20.2% reduction in the rate of hospitalisations (238 vs. 190 patients per 1,000 patient year, p=0.40), and a 12.6% reduction in the rate of all-causes emergency department visits (238 vs. 208 patients per 1,000 patient year, p=0.59) during the Acthar post-initiation period as compared to the pre-initiation period. These results were not statistically significant, perhaps due to small sample size.

Limitations of the Study
This study estimated costs from a commercial payer’s perspective, which may underestimate the overall cost burden of the disease, and may have limited generalisability to a non-commercially insured population. Additionally, this study found trends of decreased healthcare resource utilization after Acthar initiation, but most, with the exception of hospitalisations, were not statistically significant due to small sample size.

About SLE
SLE is an autoimmune disease in which the immune system produces antibodies to cells within the body leading to widespread inflammation and tissue damage. It is the most common form of lupus, a condition that impacts at least 1.5 million Americans. Ninety percent of those diagnosed with lupus are women, often between the ages of 15-44.6 Lupus is characterised by periods of illness “flares” and remissions and the disease can affect the joints, skin, brain, lungs, kidneys, and blood vessels. Symptoms may include fatigue, pain or swelling in joints, skin rashes, and fevers.

For further information, see the drug company's site

Melbourne Public Lecture by Lupus Researchers at Australian National University

Centre for Personalised Immunology: Public Lecture 2016

Genetics and Immune disease
Sunday 24th July 2016, 3pm - 4:45pm

Monash Health Translation Precinct, Translational Research Facility 246 Clayton Road, Clayton, Victoria


Professor David Fulcher
Chief Investigator, Centre for Personalised Immunology
The John Curtin School of Medical Research at the Australian National University

Professor Matthew Cook
Co-director, Centre for Personalised Immunology
The John Curtin School of Medical Research at the Australian National University

Professor Carola Vinuesa
Co-director, Centre for Personalised Immunology
The John Curtin School of Medical Research at the Australian National University

The immune system exists to protect us from infections, but sometimes disease can result when the system goes wrong. The immune system may be overactive, causing autoimmune diseases such as lupus, or underactive, resulting in immune deficiency and recurrent infections, and remarkably sometimes both problems occur together. Progress in our understanding of these extremes of immunity has been slow, but recent advances in our ability to unlock the genetic code has started to unravel important clues as to how these conditions arise.

These three speakers representing the Centre for Personalised Immunology, an NH&MRC-funded Centre for Research Excellence, will speak about how the immune system works, and how genetic changes influence the development of autoimmunity and immunodeficiency.

The talks will be followed by light refreshments; estimated finish: 4:45 pm. Please register to attend at: 

Monday, 11 April 2022

Can You Help the ANU?

Image: an incomplete sewing project.  Text: Lupus research: the Job's not finished, but someone's putting the pieces together.Hey lovely lupies, is there anyone who lives (or happens to for some other reason be) in the
Australian Capital Territory, who might like to help out the Australian National University with a lupus awareness campaign?

Here's the details:

My name is Jimmy and I am from the Marketing and Communications Services of the Joint Colleges of Science, Australian National University. Our team is working with ANU Lupus researchers to raise the profile of the disease and increase funding for research. 

We are currently planning a campaign to coincide with World Lupus Day. Our campaign will publish real stories from patients and researchers to inform people about the illness and encourage donations. 

An important aspect of our campaign is to inform the public and potential donors about Lupus and how it affects patients. We are interviewing researchers and people affected by Lupus and creating short videos. These videos will provide insights into the disease and the research taking place at ANU. 

What would be expected of you?
If you choose to participate, we would ask for you to speak on camera about how Lupus affects you. We would not ask you to speak about anything that would make you uncomfortable. We would consult with you beforehand to ascertain how you would like your story to be presented. 

How long will it take?
The filming would take no longer than an hour of your time. We would also ask for a brief meeting beforehand to discuss the interview.

Where would your story be published?
Your story may be published in a number of places. This could include:

The website
The Science at ANU Facebook page. 
The ScienceANU Twitter account. 

What if you are unhappy with your interview?
If you decide you’re unhappy with the interview, we will be happy to leave your interview unpublished. 


James Walsh

Deputy Manager, Communication (Acting)

ANU College of Medicine, Biology & Environment
ANU College of Physical and Mathematical Sciences

Building 42, ACTON ACT, 2601, Australia
The Australian National University
+61 2 6125 4375

Wednesday, 2 March 2022

Medical Marijuana
"Medical marijuana" has been the topic for a lot of news reports lately.

The Federal Government has given the green light for it to be produced and the eastern states, at least, have made moves towards doing human trials on the use of marijuana in specific conditions, and the Queensland Government has a bill proposing making it legal on prescription.

I've already seen Facebook posts asking "would you try medical marijuana for lupus?"

Let's start with a basic fact: just because something is natural or even legal doesn't mean it is safe.

For example, natural supplements, that were available over-the-counter or over-the-internet have caused liver failure and even death in some people.  The problem?  Some things that are safe in small amounts are toxic in large amounts. (The water in your tap contains chlorine and is safe - but if you drank straight chlorine, that would be very, very bad.) Another problem, for people with health issues, is that some things have negative interactions with our medication. (Have you noticed that Methotrexate sometimes comes with warnings against eating grapefruit?  Methotrexate can make the usually-harmless vitamin C into something dangerous if you have too much.)

At the moment, I don't think there's been enough scientific research for me to be confident to take it.  (I can't tell you what to do with your own body, so if you disagree with me that's fine.)  I'd like to know more about side effects and drug interactions before I was comfortable to agree to it being added to my drug cocktail.

I do like that, like other narcotics, it will be a prescription-only drug.  That means that not only a patient, but also a doctor who should be keeping up to date on the research would be looking at questions like: is this drug better for this purpose than the other options?  Is this drug safe for this purpose (taking into account the patient's condition, other medications, etc.)

I know there's a lot of anecdotes on the internet about cannabis curing all kinds of diseases.  I feel safer with medicine based on scientific evidence, rather than anecdote, but maybe that's just me.

All in all, increasing treatment options is a good thing.  But a new option is just another new option, and the risks and benefits for each patient need to be weighed up the same as with every other treatment option.


‘Big change’ coming to marijuana laws as Queensland leads the way

Does cannabis cause mental illness?

Herbal supplements linked to at least six Australian organ transplants since 2011, data shows

Medical Marijuana Trial in Australia: What you need to know,40227

NSW medical cannabis trial to treat chemotherapy patients suffering nausea

Synthetic cannabis medical trial to treat Victorian children with severe epilepsy

World first as NSW trials medical cannabis on children with severe epilepsy

Monday, 18 January 2022

Lupus Research at Australian National University

Text Lupus research: The job's not finished, but someone's putting the pieces together.I think I've mentioned before, probably a number of times, that my super-heroes don't wear tights and capes. They wear lab coats.  They're working on saving my life, and the life of other lupies around the world.

We haven't got a cure yet, but we haven't been forgotten, either.  There's lots of people working on trying to piece this problem together.

The Centre for Personalised Immunology at the Australian National University has given me this explanation of the amazing work that they're doing at the moment, to share with you all.

I know everyone and their dog is always after you for money, but if you have some to spare, you can donate to the Centre's work here.

Lupus research at the Centre for Personalised Immunology

The global prevalence of lupus is about 10 per 100,000. Lupus is much more common in women (by about 9: 1). Many patients present between 20 and 45 years of age, but lupus can affect men and women of any age. Sometimes, even children are affected.

Lupus can affect the body in many different ways. Most typically, patients present with a butterfly rash across their cheeks, joint aches and pains, mouth ulcers and chest pains. Other significant problems include inflammation in the kidneys (lupus nephritis), inflammation in the nervous system (cerebral lupus), and problems with the blood count (haemolytic anaemia and immune-mediated thrombotyopenic purpura (or ITP). At the moment, lupus is a chronic condition because there is no cure. Lupus disease activity often fluctuates over time, with patients experiencing flare-ups and then periods of disease remission. 

We know that lupus is an autoimmune disease. This means that in patients with lupus, the immune system goes awry and recognises elements of the body as if they were microbes. In other words, the immune system treats otherwise healthy parts of the body as if there were a serious infection present, and this leads to chronic inflammation and tissue damage.

There are other autoimmune diseases besides lupus. These include autoimmune thyroid disease (Hashimoto’s thyroiditis and Graves’ disease), pernicious anaemia, Sjogren’s syndrome, rheumatoid arthritis). Sometimes, these other conditions also occur in patient with lupus, or in their close relatives. Clustering of autoimmune diseases within families provides evidence that lupus, and indeed all autoimmune diseases, have a significant genetic component.

All current treatments for lupus are aimed at reducing inflammation and suppressing the immune response. Most of these treatments, however, are quite non-specific and suppress the immune responses that contribute to lupus, but at the cost of suppressing the immune responses necessary for fighting infections. Ultimately, we need to find more specific treatments, which depends on a better understanding of the mechanisms of lupus.

Our research strategy
The immune system is extremely complicated and therefore even once we have narrowed the cause of lupus down to a problem with immunity, it remains an enormous challenge to understand the precise nature of the abnormality. We are taking several different approaches to this problem.

In general, we are seeking to understand the genetic specification of abnormalities in immunity that lead to lupus. The technical challenges for performing this sort of research are substantial. We have been working on these questions for quite some time and have established significant research infrastructure to perform state-of-the-art genomics analysis, which enables us to identify single genetic variants anywhere within the 3 billion bases that make up the human genome. Analysis of genomes from patients with lupus or other immune disorders provides the first step in the discovery pathway. Each individual harbors thousands of genetic variants and the difficult task is to understand how these might alter normal immune function. This is where our efforts are concentrated. In order to accelerate this process, we also stratify our discovery based on the knowledge that:

  1. Severe cases of immune-mediated disease sometimes yield answers more readily than milder cases. For lupus, severity can be assessed by early age of onset, unusually severe or refractory manifestations. Detailed analysis of patients with severe cases can then provide signatures of genetic and immune abnormalities that are more obvious. Once we have identified these signatures, we can then proceed to look for the same abnormalities in patients with milder disease.
  2. Genetic predisposition would predict an increased incidence in relatives with lupus. We are investigating families in which more than one person is affected by lupus or autoimmune disease.

How is this work funded?
Our progress in the area was recently recognized by the award of a Centre of Research Excellence grant from the National Health and Medical Research Council of Australia. This is a highly prestigious grant and recognition of consistently high quality work. It also represents acknowledgement of the potential for our approach to make important progress in understanding diseases, including sarcoidosis. More information about the centre can be found here:

How do I get involved?
Patients provide written informed consent to participate. After this, we proceed to extensive gene sequencing (whole exome or whole genome sequencing). Once candidate genes are identified, then detailed laboratory analysis is performed to try and identify which genetic abnormalities are instrumental in causing disease. Some of this work is performed on patient lymphocytes obtained from a blood test.

Friday, 15 January 2022

Good News - Well, Eventually

I had a talk with someone from Australian National University today, and I'm really excited about the work they're doing on ways to treat a specific individual patient.

As most of us have experienced, up until now, lupus treatment is often hit and miss.  We try one medication, if it doesn't work we try another, our our doctors have us try again and again, until we find a cocktail that keeps everything under control.

The research into personalised treatment sounds like it could, eventually, change all of that. It's sort of like, give them your genes, and they'll give you the right treatment for you.  But, of course, it's more complicated than that.

I'm hoping one of the researchers will be able to do a post for this blog, to explain, far better than I could, what they're doing.  I really think this is some of the good news we've all been waiting for.

While you wait to read all about it, maybe you'd like to help them out.  Here's the link to their donation page.

Wednesday, 12 August 2022

Want to Help Medical Research?

I've heard about a couple of studies that lupies may possibly be interested in helping with.

Firstly a local one (well, Brisbane, which is close to local).

Medical Photographer Kara Burns at the Queensland University of Technology is doing a study on medical selfies, and how taking photos of rashes, moles and other oddities could help with patients medical treatment.

If you have an interesting rash to share, Kara would love to hear from you.

You can find out more about her research here: 

If you  are interested in being part of her study, her email is

The other is a study taking place in the USA to test a new lupus nephritis drug.

Chris Lovelace from The Patient Recruiting Agency said:

Aurinia Pharmaceuticals Inc. is developing Voclosporin, an immunosuppressant, for the treatment of lupus nephritis, and is conducting this study to demonstrate its efficacy and safety when taken orally twice daily when compared to placebo.  The study will last about twelve months and consist of about 13 visits to the study clinic during that time.

Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.  As I’ve seen you note in your blog, the costs associated with chronic disease management can be dangerously burdensome, so this may be a way for some patients to receive more attention than they would otherwise have.

If you are interested in taking part, you can find further information at:

Tuesday, 19 May 2022

Better, Safer, Lupus Drugs on the Way

Researchers at Australia's Monash University have made a breakthrough which could eventually lead to much better lupus drugs - which would attack lupus, not the entire immune system.

One in 1000 Australians is affected by lupus.  That's a lot of people on drugs which are aimed to switch off the immune system.  Immunosuppressant drugs mean people with lupus are more likely to catch infections, and have more trouble fighting infections once caught.

From the report (see reference below):

In healthy people, B cells attack diseases by producing antibodies that destroy invading pathogens. In lupus sufferers, B cells are misdirected to produce autoantibodies - cells that destroy the patient's own healthy tissue. Most commonly, lupus affects the skin and joints, but it can also strike the brain, kidneys and almost anywhere in the body.

In order to survive, B cells rely on a particular protein - called B cell Activating Factor of the TNF Family (BAFF), however too much BAFF causes lupus to develop. Each B cell carries three different kinds of receptor that detect BAFF in the blood stream. The receptors are known as BAFF-R, BCMA, and TACI. It is the TACI receptor that responds to excesses of BAFF, becoming overstimulated and triggering production of even stronger autoantibodies to attack healthy tissue.

Researchers found that if the TACI receptor is deleted, the B cells remain intact but lupus doesn't develop no matter how much BAFF is in the blood.

Dr (Will) Figgett (from Monash Immunology Department) said that while B cells are vital to a healthy immune system, the TACI receptor itself is not crucial - the cell can fight most diseases without it.

This breakthrough means researchers developing lupus drugs have a very specific target.  If future medications could turn off that receptor, without turning off the rest of the immune system, then if not a cure, we could have a treatment with far fewer side effects.


Donate to lupus research at Monash here:

Lupus Patients Suffer More Than We Say

I don't think anyone's going to be surprised about this.

GSK has released the results of a  "global" survey ("global" here meaning North America, Brazil and three European countries) which found patients only told their doctors about the symptoms that annoyed them most.  Things that patients responding to the survey said were real problems, doctors had seen as minor because patients under-reported.

It also found that carers thought lupus patients could do more than they actually could, and that carers did not realise the affect lupus had on confidence, social life, and many other areas.

And the blame for all of this? It's on us, the patients.  We're all too nice.  We try to protect our families and carers. We don't want to dump everything on our doctors.  Surprise, surprise. They don't know what we don't tell them.

So perhaps what we can learn from this piece of research which has told us what most of us already knew, is that we really need to be honest with our family, friends and carers; and we need to make a list of everything when we go to the doctor.

Reference: Survey find lupus patients suffer more than physicians perceive

Tuesday, 10 February 2022

Anyone want the gold standard treatment for their arthritis?

Gold nanoparticles could be used to build a new class of anti-arthritic drugs that are more effective and have fewer side- effects, according to new research from UOW. 

The researchers, led by PhD chemistry student Lloyd James, tested the efficacy of gold nanoparticles in a type of immune cell or white blood cell, called macrophages, which play a significant role in the autoimmune disease, rheumatoid arthritis.
Gold compounds have been used for the treatment of rheumatoid arthritis for approximately 80 years, and are usually given via intramuscular injection. Its use tapered off in the 1990s due to limited efficacy, slow onset of action and numerous side effects, including kidney damage and skin rashes.
However, this latest research shows new promise for the glittery compound.  In their study, recently published in the Journal of Inorganic Biochemisty, the researchers found that by reducing gold into tiny nanoparticles (50 nanometres or 1000 times smaller than the width of a human hair), more gold was absorbed into the cells, with much less toxicity.
“We found that gold nanoparticles were taken up by more cells and in greater quantities than the traditional gold drugs, but without any toxicity which is often associated with negative side effects in clinical therapy,” Lloyd said.
“Effectively, our study found gold nanoparticles didn’t kill immune cells. While cell death is something that you look for, for example in cancer therapies, when it comes to rheumatoid arthritis, cell death can be associated with negative side effects,”  

So why does shrinking the size of gold particles boost effectiveness and decrease side effects?
“That’s the million-dollar question,” Lloyd said. 
Lloyd and his supervisors think that it may be partially due to there being more gold available in the cell - thousands of tiny nanoparticles compared to just a handful of traditionally sized particles. However this is a question their research is now trying to answer, along with the specifics on just how small the nanoparticles need to be.
The Wollongong-born chemist, who started his undergraduate degree with UOW seven years ago and is hoping to finish his PhD this year, said that while this research is in its early stages, it may eventually show promise for the estimated 445,000 Australians who suffer from rheumatoid arthritis, a painful and incurable condition in which the body starts attacking its own joints. 
“It’s very much a possibility that gold nanoparticles could become a potential treatment for rheumatoid arthritis,” Lloyd said, adding that it may be given orally in the future.  
“I find that very interesting because gold was one of the early success stories for treating rheumatoid arthritis. And now it’s coming full circle.” 
The use of metals for medicinal purposes in actually more common than most people think. Colloidal silver has been used for centuries as an antiseptic, a bismuth compound has been used to quell stomach problems and a platinum drug called cisplatin has been a great success story for chemotherapy.
“Cisplatin is used in the vast majority of testicular cancer cases and has some very successful remission rates. It is now used as a comparison for a lot of other drugs,” Lloyd said.
“I think there is a lot of untapped potential in the medicinal properties of metals.”
This research project also involves Associate Professor Stephen Ralph, Dr Carolyn Dillon, Professor Jenny Beck and Professor Nick Dixon from the School of Chemistry and Dr Ron Sluyter from the School of Biological Sciences. 
Reprinted with permission from University of Wollongong. 
Original story here.

Friday, 14 June 2022

Reliable Information

Image: Kookaburra. Text: Let me get this straight. You're not a doctor but you know my doctor's wrong, and you know how to cure my condition because you read it on the internet? I'll answer when I stop laughing.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  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:  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, 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.

Wednesday, 5 June 2022

Help Find A Cure

You may remember my earlier post Towards A Cure about the work of Professor Carola Vinuesa and her team at the Australian National University's John Curtin School of Medical Research.

I promised you a link where you could donate to support their work.  At long last, I have it.

If you want to support this research you can do so here:

The link has been added to the right-hand column of and will stay there permanently.

Thursday, 16 May 2022

Queensland Government gives $1.25 Million to Research

So thrilled when the following media release was forwarded on to me.

The State Government has given $1.25 million to an arthritis researcher who is working on Rheumatoid Arthritis (RA) and tuberculosis (TB).

Hopefully advances in understanding RA will also help people with lupus and other forms of arthritis.

Following on from the recent decision to join in with the rest of the country in Disability Services Australia, this government is starting to look like it might actually care. (Of course, there have also been cut-backs in Queensland Health, but we can't have everything.)

I'm reproducing the media release in full (not the kind of thing I used to do as a journalist) because this is something I think is quite important to all of us.

Media Release


The Honourable Campbell Newman

Minister for Science, Information Technology, Innovation and the Arts
The Honourable Ian Walker

Premier’s Science Fellow to help arthritis sufferers

An expert on genes that increase the risk of common human diseases was today awarded the Queensland Premier’s top science prize.

Professor Matthew Brown from the University of Queensland Diamantina Institute was awarded the prestigious $1.25 million Premier’s Science Fellowship to advance the diagnosis and treatment of rheumatoid arthritis and tuberculosis (TB).

Premier Campbell Newman congratulated Professor Brown on his award and thanked him for his remarkable work that was positioning Queensland as a global leader in genetic research and diagnostic testing.

“This Fellowship allows Professor Brown to progress his gene-mapping research in ways that will benefit not only our health but also Queensland industry,” Mr Newman said.

“He already has three patents for tests to diagnose a related condition, ankylosing spondylitis (AS)—a severe type of arthritis affecting more than 80,000 Australians—and his genetic findings have led to trials of new treatments for AS. 

“Over the next five years Professor Brown will use the fellowship to identify the genes underlying the causes of rheumatoid arthritis and tuberculosis and develop better diagnostic tests to screen for them.”

Professor Brown said it was a great honour to win the Premier’s Science Fellowship.
Professor Brown trained as a physician specialising in rheumatology but was unhappy with the limited treatments he could offer patients so he switched from clinical practice to researching the condition.

“The techniques we are developing have real commercial possibilities and healthcare benefits. We expect to roll out affordable diagnostic tests within five years, paving the way for new treatments targeting the root cause of the diseases,” Professor Brown said.

“Rheumatoid arthritis affects 2.5 per cent of Queenslanders and more than 513,000 Australians and there are no treatments to prevent the disease or induce remission. 

“The increasing incidence of tuberculosis is also a concern, particularly the cases of multidrug resistant TB arriving in Queensland from Papua New Guinea and the Torres Strait islands.”

The Queensland Government’s $1.25 million investment, which is matched by The University of Queensland, reinforces the government’s commitment to working with universities to support scientific research that delivers real benefits to the community.

[ENDS] 16 May 2013 

Friday, 3 May 2022

Towards a Cure

Professor Carola Vinuesa and Team
John Curtin School of Medical Research
You know my heroes are people who are mostly anonymous, working away in labs, trying to find a cure for lupus.

Over on the right, you can see one of these amazing teams of heroes.

This is Professor Carola Vinuesa and her Humoral Immunity and Autoimmunity team at Australian National University's John Curtin School of Medical Research.

They discovered a gene, roquin, which is central to autoimmune diseases. It controls the quality of the antibodies produced by the body's immune system. A mutation in roquin allows rogue antibodies that attack the self - autoimmune diseases.

Further work has led the team to find how roquin works with other DNA.

The discovery led to Professor Vinuesa winning the 2008 Science Minister's Prize for Life Scientist of the year.

In accepting the award, Professor Vinuesa said: "We lead much healthier and longer lives today than 50 years ago due to a dramatic improvement in health care and overall wealth. That is why it is hard to understand why the incidence of autoimmune diseases keeps steadily increasing, affecting around one in eight Australians.

"Despite intensive research, no cure has yet been found, and treatments still rely on drugs that dampen the whole immune system and can cause serious long-term side effects."

The discovery of roquin is a step towards treatment that will affect only the malfunctioning part of the immune system, possibly even towards a cure.

A suggestion:

10 May is World Lupus Day.

Whatever you're doing on the day, whoever you're with, take a container with you.  Get everyone to empty out their pockets. Collect everyone's loose change (notes, too if they're willing to part with them).  Very soon, I'm going to get a link for which will allow you to donate directly to lupus research at the John Curtin School of Medical Research. (And you know what to do with your container of money then.)

Want to know more about Professor Vinuesa and her team?

2008 Science Minister's Prize for Life Scientist of the Year.  ttps://

Australian National University John Curtin School of Medical Research, Pathogens and Immunity Department, Humoral Immunity & Autoimmunity

For people overseas, who don't know, John Curtin was Australia's 14th Prime Minister.

Friday, 15 March 2022

Autoimmune Research

This is about six months old, because I'm waaayyy behind the times, and didn't realise the Australian Broadcasting Corporation put these type of things up on YouTube for everyone to watch again later. Here's the 7.30 program's story on Dr Chris Goodnow from when he won an $80,000 award for his autoimmune research.

His father died from lymphoma, and his mum's a lupus patient, so Dr Goodnow has plenty of reasons to want to find us a cure.

You can find the transcript of the story here. (The same link will take you to the ABC's video, if you find the YouTube clip above doesn't work properly.)

Saturday, 24 November 2022

If I Had Unlimited Money
If I had unlimited money.....

OK, I have to confess up front, I'd deal with my own personal financial crisis - clear my debts and make sure I had somewhere to live.

After that, I think I have four priorities for money:
  1. Lupus research. I would really want to help towards better understanding of lupus, better treatments and ultimately a cure.
  2. Improved support systems.  Here in Queensland, we have a social group for support for lupus patients, but it would be great to have counselling services, information services, referral services, etc. Maybe it could even link lupus patients with discounted or subsidised services for things like house cleaning, yard maintenance, etc - the things we don't manage so well for ourselves.
  3. Helping people with lupus help themselves.  Based on the Lupus Business Directory, I'd love to be able to provide free services to help people with lupus and other chronic illnesses to earn their own income. There's a degree of dignity to earning your own income, that we can lose when we lose our ability to have a regular job. Even to earn a small amount from something we've done makes a difference to our sense of self-worth.
  4. Lupus awareness.  There are so many health conditions that are far less prevalent than lupus that people generally know more about. That's because they get advertising and awareness campaigns.  Those kinds of campaigns take either money or someone famous backing them, or both.  More awareness would mean lupies would have to deal with less of the assumptions about how we look healthy therefore we can't really be that sick.
There's a lot of things money can't do.  But there are some areas where it really could help.  It would be wonderful to see someone who did have the money put it into some of those areas. 

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


While we're on the topic of money, how's your Christmas gift shopping going?  Is there anyone you still need to get something for?  While you're here, take a look at some of the businesses in the Lupus Business Directory, see if you can find that present you're looking for.

Wednesday, 5 September 2022

Cognitive Dysfunction
My struggle with the ongoing "brain fog" issue is driving me nuts. So I set out to find out what I could about the current state of research and treatment in this aspect of Lupus.

What did I find out? Probably far less than if I weren't struggling with brain fog. Not much is actually sinking in or staying with me at the moment - but I've given you links to some of the sites I've read, so if you're thinking more clearly, maybe you can glean more from it all than I did.

Brain fog, or cognitive dysfunction, includes things like forgetfulness, confusion, struggling to find a word, anything that interferes with normal thought function.

So the reassuring things I found out? Researchers in both rheumatology and neurology are working on the problem. And 80 per cent of lupus patients have periods of brain fog - so it may be frustrating, even frightening, but I'm not the only one. (There's safety in numbers, right?)

The not-so-reassuring things? Well, the researchers don't seem to be learning much. There doesn't seem to be a link between brain fog and how active lupus is, or anything you can see in a blood test (lots of lupus issues don't show up on the blood tests). If lupus has actually caused physical brain damage, that's likely to cause brain fog, but there's no sign of pinning down any other indicators. There's a lot that researchers just don't know.

Regular aspirin may possibly reduce brain fog in older lupus patients, and steroids may aggravate it. And there doesn't seem to be an overall improvement or decrease in ability over time. (That is, brain fog just doesn't keep getting worse the longer you have lupus.)

Making lists, using tools like pill sorters, etc may help overcome some of the problems. So do things like repeating the same tasks over and over, and developing habits (always leaving the keys in the same place, etc).


Cognitive Dysfunction in Systemic Lupus Erethematosis

Cognitive Dysfunction in Systemic Lupus Erethematosis is Independent of Active Disease

Cognitive Impairment in Systemic Lupus Erethematosis

Lupus-Related Fatigue and Cognitive Dysfunction: The Chicken and The Egg

Neuropsychological Function in Systemic Lupus Erethematosis: A Five-Year Longitudinal Study

Pinpoint Cognitive Dysfunction in Patients With Lupus

Predicators of Cognitive Dysfunction in Patients with Systemic Lupus Erethematosis

Thinking, Memory and Lupus: What We Know and What We Can Do

What is Cognitive Dysfunction?

Tuesday, 28 August 2022

Dr Internet Prescribes Cannabis to Cure Cancer

A while back, I wrote about low-dose naltrexone, being  promoted on the internet to cure multiple conditions, including all autoimmune diseases, and HIV/AIDS.  Research into the possibility of this actually being true was in very, very rudimentary stages.

Today, I found this delight on Facebook:

What's the truth?

Well, looking for some reliable research on the net, what I've found is that there is research being done - it's even started on mice. It's a very long way from clinical trials on humans.

One of the allegations I saw on Facebook, was that there was a cover-up.  Clearly that's not true, because the actual research is out there for people to read.

There are lots of personal "stories" anecdotal evidence of people using this product - and getting good results, but there's nothing to say it's the cannabis that caused the good results or the standard medical treatment people were already taking.

In mice and petri dishes, cannabinols have been shown to do things like cause cell death, and stop blood flow to tumour cells. These things might be useful in some future cancer treatment derived from these chemicals. There are also early signs of there being unwanted effects from the chemicals - including encouraging some cancer cells to grow.

There has been one clinical trial (trial with human patients), which was with patients with advanced brain cancer. Most of the patients had some response to the drug, but all died within a year.

The lesson, as with LDN, is that just because something is promising in early research, doesn't mean it's instantly a cure.

It certainly doesn't mean it's safe to use - especially, it doesn't mean it's safe to use in humans.  It doesn't mean that there's any knowledge whatsoever as to what dangerous interractions it might have with other drugs. It means it's worth more investigation. Hopefully, that research will take us closer to actual cures.


Cancer Research UK: Science Blog Update: Cannabis, Cannabinoids and Cancer - the Evidence So Far
International Cannabinoid Research Society
MailOnline: Boy with Brain Cancer is "cured" after secretly being fed medical marijuana by his father.  (Note, in this case the boy was not just taking marijuana, but also the standard chemotherapy that is usually used to cure this kind of cancer.)
PubMed (List of Cannabinoid/Cancer Research papers)