“I think that a lot of chronic fatigue syndrome (cfs) is caused by exposure to hydrocarbons. In my case minor dizzy spells induced by levels of 4-6ppm formaldehyde produced cfs and sleep disorder symptoms.”

I googled formaldehyde to see if there were potential exposures that would be specific to my teenage daughter.

I found that formaldehyde is used in “cosmetics and personal care products, such as cleansers, fingernail varnishes and hardeners, shampoos and conditioners and toothpastes” as well as dozens of other products.

At a quick count my daughter uses 15 different products. Not sure yet which contain formaldehyde but I am certainly keen to find out.

If you are interested in finding out more about the commercial uses of formaldehyde you will find a worryingly long list at Product Safety Australia.

I also noted with concern that Wikipedia Formaldehyde entry says that “On 10 June 2011, the US National Toxicology Program has described formaldehyde as “known to be a human carcinogen”.”

While healthy people might be able to deal with a toxic chemical load it seems logical that bodies with existing health stress may be overwhelmed by additional challenges and shut down.

That’s what it looks like when chronic fatigue syndrome happens – like a shut down.

So I guess if you or your child suffers from chronic fatigue it might be a useful strategy to lighten the chemical load a bit.

It isn’t going to do any harm and hey it might just help.

I suppose in a general sense the message for all of us is – do your homework, read labels and choose your products with great care.

Being unable to get out and about can lead to feelings of isolation and frustration. Where does this fatigue come from?

Fatigue is an issue for people who suffer chronic pain. I’ve noticed that it is common for parents to report that their children have Chronic Fatigue Syndrome as well as pain issues.

If this is you, I thought you might be interested in some new research into chronic fatigue that just cropped up on the ABC News Website.

“Virus theory for chronic fatigue” by Nonee Walsh (ABC News 6/1/12) explains that the theory that Chronic Fatigue Syndrome was caused by a virus has now been abandoned.

While this isn’t exactly a break through or great news at least one avenue of thought has been explored. Looking at it positively we are one step closer to working out what it really is.

Don Staines, from ME/CFS Australia points to some other possiblities on the horizon.

Dr Staines says it is not all bad news for CFS sufferers though, because of a new study from Norway.

“The whole scene has now changed direction markedly, as they are now suggesting this could be an autoimmune disease,” he said.

The Norwegian study used a drug already in use for autoimmune diseases, reporting it was also effective in treating chronic fatigue syndrome.

“It is probably the best evidence that anyone has come up with ever in this,” Dr Staines said.

So maybe 2012 will be the year when those suffering from chronic fatigue see some solutions emerging. Fingers crossed.

At the top of my list is a dedicated pain unit at Princess Margaret Hospital led by a medical specialist in children and pain.

At the Pain Summit in 2010 a study was presented revealing that 46% of children with terminal cancer receive inadequate pain relief in the last month of life. Read the release here.

Just pause for a moment and think about the unnecessary suffering involved here – both for children dying in pain and for their families standing by them.

High quality pain management is not being delivered even in this extreme circumstance.

For over a decade I have been able to observe the gaps in services for children living with chronic pain in our own hospital here in Perth.

As the parent of a child in pain I have spent a lot of time looking for help and support and just not finding it.

In the end our medical support system consisted of our wonderful Rheumatologist and our local chemist.

As we struggled through times of great difficulty the kindness and expertise of these two overworked men were all we had.

There is an absence of training and support for parents who find themselves managing this distressing and complex situation.

In talking to other parents of children living with pain I keep hearing that they feel alone and they don’t know who to turn to.

We need our own integrated system where families have access to high quality information and support both inside the hospital system and back out in their own homes.

In February next year I am going to speak with the Board of the Health Consumers” Council of WA about the gaps in support for children in chronic pain.

If you have a request please send me a comment or use the contact page on this website.

It really is time to address what is an obvious gap in our health system – I’m going to give it my best shot. I know there are many others working really hard to do the same.

Please join us and help make this years Christmas wish for integrated information and pain support services a 2012 reality.

Apparently there is research showing that how we parent can influence our children’s perception of pain.

I am curious about how we track down this type of valuable information and make it accessible and practical for parents.

These days there is a lot more known now about pain and how best to treat it.

How best to manage pain medications and side effects is also practical information that could help parents.

Maybe parents who are better informed will feel more confident to manage flareups at home and so reduce the demand on emergency departments.

There really is information that can help parents care for a child experiencing chronic pain.

I wonder what we can do to make that more accessible? Is this something that interests you?

“He was then questioned by another woman, who wanted to know how to focus on happiness when she is worried for her disabled daughter’s future.

“[My teacher once said] when we face unfortunate difficulties, we should analyse that difficulty’s nature,” the Dalai Lama said.

“If there is a way to overcome it, then no need to worry. If there is no way to overcome it, then there is no need to worry.”

Source: ABC Online, 17 June 2011

Dalai Lama photo thanks to Ted Lipien on Flickr.

So what do you do when you hear about acupuncture, reflexology or some other form of alternative medicine that claims to help with joint pain?

Simon Singh has written a number of books about science, and I’ve always been impressed by how thorough he is and how well he can explain complex topics.

Most recently he has written Trick or Treatment? Alternative Medicine on Trial. After watching the 15 minute ABC Fora session featuring Simon (view below), I plan on getting the book.

If you are working with, or considering working with a chiropractor, the book presents information on chiropractors that you may find relevant. An article by Simon Singh published in The Guardian has some very specific claims.

Link to the ABC Fora page: Choose Your Poison, July 2009

A description of Trick or Treatment from the book’s website:

In Trick or Treatment? the truth about the efficacy of alternative medicine is rigorously addressed for the first time by the scientist uniquely qualified to do so: Professor Edzard Ernst, the world’s first professor of complementary medicine. Having spent over a decade at Exeter University meticulously analyzing the bewildering evidence for and against alternative therapies, this former practitioner of both traditional and complementary medicine brings no bias to the subject.

Writing with him is the respected science writer, Simon Singh, who also brings his considerable scientific knowledge and scrupulous impartiality to this most controversial subject. Together, they deliver a hard-hitting, yet honest examination of more than thirty of the most popular treatments, such as Acupuncture, Homeopathy, Aromatherapy, Reflexology, Chiropractic and Herbal medicines.

Whether you are an ardent follower, sceptic or just plain baffled by the subject, Trick or Treatment? is a groundbreaking guide which finally lays to rest the doubts and contradictions that have dogged this subject for so long. Written with authority, integrity and clarity, this book delivers the ultimate verdict on alternative medicine.

Today Glenn inspired our group of young people, all with varying degrees of joint problems.

He showcased to our our children their employment opportunities in the new online ecomomy.

Computers and the world wide web have opened the doors so widely that there is now no limits on our kids future.

This is a special time and this generation have a chance to grab the opportunity with both hands.

The computer does not discriminate no matter what your physical capability or where you live – you can earn your living online.

Glenn is a self taught entrepreneur of the computer business world and he has the talent and passion to help point our group in the right direction.

The next session will certainly be another eagerly awaited event.

We thank you Glenn and Julia & a special thank you to Jenny Geelen (herself a successful online business woman) and Michael Black who welcomed us into their home for this first event.

This is the theme of a workshop we are having this week-end for several of the teenagers who attend the hydrotherapy groups at the Kidz Clinic.

We are hoping this will be the beginning of a project that explores the new online economy and the different careers that are emerging in this global marketplace.

There are new career options emerging because of the possibilities of the Internet aren’t as well understood by traditional career advisers.  It is also true that even existing careers can take on new forms when combined with specialisation in niches.

Working to earn an income online also mean much more control over the work environment.

Joint pain often puts teenagers at a disadvantage in a traditional working environment, whereas there are quite a few options when it comes to putting together a working environment that is based around a computer.

My husband Glenn and I will run the group. We run an online business, and hope to share some of our insights with the group.

Each family will have a different approach.  Let me share with you how my Hubby stays connected.

Now before I tell you what he does I will describe him.   He is my big strong Italian man with a soft centered heart who idolizes his living puppet girls (we have twins with Ehlers Danlos Syndrome).

My husband ensures he has uninterrupted time every week night at 7pm to watch Home and Away with his teenage girls and they talk about just the general stuff that happens in the show.

This is their time and it is a really special time in our family.

One of the Dads downloads popular songs for his daughter’s iPod and his daughter chirps up and says don’t forget Dad, you also do MySpace for me too!

One of the Dads is a carpenter and he builds all the dream pieces that his daughter wants in her make believe fairyland world.

One parent is a Step Dad and he teaches his son the drums.

Dads play an important role in every families life.  If there are health challenges that role becomes even more significant.

Hey Dads – you are treasured more than you know! Take a moment after reading this article and think about what it is that you may be doing.

What can you do to create that special bond in your family?

Rona Chiera -Moore River