Creating awareness about chronic immunological and neurological diseases

It’s 12 May, and today is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). Diseases included under the CIND moniker include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivities (MCS).

Originally known as ME/CFS Awareness Day before it was expanded to include the wider range of diseases above, the date of 12 May was chosen as it is the birthday of Florence Nightingale, who was believed to have suffered from ME/CFS.

A challenge often faced by ME/CFS sufferers is a lack of understanding among those around them. (© All Rights Reserved)
A challenge often faced by ME/CFS sufferers is a lack of understanding among those around them.
(© All Rights Reserved)

While the illnesses included under the CIND banner are all different and unique, they are all chronic diseases with many symptoms in common, including fatigue, headaches, joint & muscle pain, indigestion, insomnia, dizziness, respiratory disorders, sensitivity to light and sound, and memory problems.

The idea behind CIND Awareness Day is to raise the awareness profile related to the diseases mentioned above; to stress the very real and highly debilitating effect that these diseases can have on those suffering from them. The vague nature of the symptoms, the overlap between the diseases, the fact that symptoms can vary greatly from one sufferer to the next, and the fact that no clear biological, genetic, infectious or psychological mechanism exist to define the diseases, combine to make them very difficult to correctly diagnose. Symptoms also overlap with several other illnesses, including Lyme disease, diabetes, depression, lupus, hypothyroidism, chronic hepatitis and multiple sclerosis (MS). As such, diagnosis of these diseases are often done through a process of elimination of any other possible ailments.

One of the greatest challenges posed by diseases like ME/CFS and Fibromyalgia is that, due to the symptoms being so vague and difficult to pinpoint, sufferers are sometimes seen as being hypochondriac or faking it. Non-sufferers find it difficult to relate to the extent of the debilitation, expecting sufferers to just ‘snap out of it’. If the CIND Awareness Day can succeed in helping to dispel this misunderstanding, it will already have achieved a huge amount.

To find out more about the day, and to get involved, have a look at Clark Ellis’ article on the ProHealth website – it gives excellent background to this Awareness Day, and lists specific activities happening in different parts of the world.

Awareness and understanding is a key part of the struggle for people suffering from ME/CFS, FM and other related diseases, so the least we can do is to help spread the word.

Dubious facial hair alert – it’s Movember!

It’s the 1st of November, and summer is well and truly upon us here in the far South. Being November, of course it also means this is Movember – the one month men around the world become heroes for sporting facial hair that would, during any other month, raise serious questions about their state of mind.

Floppy, curly, twisty, bushy, or perfectly groomed, Movember is the month for crafting your own unique moustache – as individual as your fingerprints.

According to the Movember rules, you start the month clean shaven, so herewith the month’s famous last big shave.
(© All Rights Reserved)

The reason of growing a ‘mo’ during Movember is to help raise awareness about men’s health,  specifically prostate cancer and depression. As stated on the Movember site, “Mo Bros effectively become walking, talking billboards for the 30 days of November and through their actions and words raise awareness by prompting private and public conversation around the often ignored issue of men’s health.”

Movember started in Australia (good on ya, mate!), and has since grown into a truly global movement, with almost 2 million participants in a wide range of countries, including Australia, New Zealand, the US, Canada, the UK, South Africa, Ireland, Finland, the Netherlands, Spain, Denmark, Norway, Belgium and the Czech Republic. Movember aims to “change established habits and attitudes men have about their health, to educate men about the health risks they face, and to act on that knowledge, thereby increasing the chances of early detection, diagnosis and effective treatment.”

In New Zealand, funds raised through the Movember initiative go specifically to the Cancer Society of New Zealand and the Mental Health Foundation of New Zealand.

You can get involved informally, simply by not shaving your moustache for a month. However, to really go the whole nine yards, why not register through your national Movember website/forum, where you can formally commit to the challenge, and update your progress throughout the month. Different countries have their own unique sites, typically http://<your country code>.movember.com/ (simply going to www.movember.com should also redirect to your local site). Committing on such a public forum not only helps to keep you honest (to keep you from shaving your mo for that special date or meeting halfway through the month) but it also means that you officially become part of the Movember fundraising initiative. And, most importantly, you become a registered Mo Bro, part of the global Mo Brotherhood.

Of course it’s not just for men – women are also encouraged to register as ‘Mo Sistas’, in support of the men in their lives.

Day 1 – clean shaven (well, almost), and slightly worried about what this picture is going to look like in 30 days…
(© All Rights Reserved)

To visit me, Mo Bro Gerry, drop by my Mo Space Page – I will try to update the space every so often and will also be posting updates on this blog, so let this serve as an early dubious facial hair alert.

Let the growing begin… Ready, steady, Mo! 🙂

Daffodil Day and the ongoing fight against cancer

It’s Daffodil Day today, August 31st. Well, it’s Daffodil Day in New Zealand, to be exact – Australian Daffodil Day happened on the 24th of this month already. The US, bless them, seem to have a whole bunch of different Daffodil Days across different states. (With Daffodils being a spring flower, it obviously makes sense that most US Daffodil Days happen earlier in the year, around February, and not August/September, as it does down here in the South.)

Daffodil Day is all about cancer – raising awareness of the disease, raising funds for cancer related research, and creating a support network for individuals suffering from the disease.

The reason why the daffodil flower is used internationally by Cancer Societies as the global symbol of hope for people living with cancer, is that it is one of the first, and one of the strongest, flowers of spring, and as such is a symbol for hope and renewal, new life, new beginnings and new possibilities.
(© All Rights Reserved)

Cancer is an incredibly pervasive, prevalent disease – here in New Zealand it is the leading cause of death in the country –  and I’m sure there are very few people who are not in some way fairly directly affected by it. My dad died of cancer in his liver and colon; my mother in law is a breast-cancer survivor; just about everyone I know has someone close to them who has either died from, or is living with, the disease.

In a nutshell, cancer occurs when cells in the body accumulate genetic changes (due to various factors), resulting in a loss of growth control. Normal cells grow, divide and die in an orderly manner, in response to signals from the body and the environment. When cells become cancerous, however, they fail to respond to the normal signals, and start growing and dividing in an uncontrolled manner. These out-of-control cells can spread through the body via the bloodstream or lymph vessels (a process called metastasis) and continue to grow and replace normal tissue. It is the fact that it’s the body’s own cells that go crazy and effectively turn against their host, that makes it such a complex disease to treat.

As mentioned, one of the critical focus areas of Daffodil Day is raising money to support research into finding cures for the disease.

Over the years, literally billions of dollars have been spent on cancer research, and it’s quite a sobering thought when you realise that, in spite of all this, the death rate from the disease has changed little over the past 50 or so years. As new therapies are developed, cancer also adapts and evolves, finding new ways to kill.

Now this does not mean all is in vain – millions of people have been saved from the therapies that have been developed. All it means is that there is no room for complacency, and new and more effective cancer therapies are continually needed to stay ahead of, or at least keep up with, the disease.

In my job as a science photographer, I interact with a wide range of research and technology organisations, and one of the most inspiring of these is the Malaghan Institute of Medical Research – New Zealand’s leading medical research institute, and a registered charity based in Wellington, NZ. The reason I mention this fact is that one of their main fields of research is cancer (they also research cures for asthma, arthritis, multiple sclerosis and infectious diseases) and they are one of the organisations supported through the proceeds of fundraising events like Daffodil Day.

One of the main fields of cancer research that the Malaghan Institute focuses on is Immunotherapy, which basically involves using the immune system and it’s unique properties to complement existing cancer treatments. As they explain, “Immune cells are specific and have the capacity to discriminate between normal and cancer cells, they have powerful effector capacity and can recruit inflammatory cells to destroy neoplastic tissue, and they can migrate to different tissues and eliminate residual metastatic disease.” So, similar techniques to those used in helping the immune system recognise and fight contagious diseases (such as vaccination, etc), can also be used to help the immune system recognise cancer cells and to strengthen their ability to destroy them.

Another more recent research subject at the Institute is cancer stem cell research. Cancer stem cells are cancer’s evil root – these tumor initiating cells are highly resistant to drug and radiation treatment – and the focus of the research is on finding safe and effective ways to eradicate them.

Researchers at the Malaghan Institute of Medical Research are conducting research into Immunotherapy, unleashing the full cancer-fighting potential of the immune systems of cancer patients to fight the disease.
(© All Rights Reserved)

Organisations like the Malaghan Institute, and many others like them across the world, are doing incredible work to address the continually evolving threat of cancer, and really need all the support they can get. It’s a scary, scary topic, and it’s good to know there are talented, committed scientists and researchers out there facing the challenge head on.