Apr 16, 2012

Reflecting on the Diet after Easter

Easter, the time of the chocolate and the hot cross bun!  And maybe some religious ... stuff.

But what did Easter mean for non-Christians with long lists of food intolerances?

As most people with ME/CFS will know, diet can play a huge role in managing symptoms.  Food sensitivities and even allergies are very common with this illness, and food often needs to be as natural as possible for the body to handle it.

For me, this has meant different things at different stages.  These days I have a few rules I need to follow - mostly going with non-dairy and non-processed food - but when I first became ill, I did a lot of experimenting with food to figure out what was best.

One thing I discovered early was that alcohol was a lot more potent than it had been and my hangovers much more intense, so that was one of the first things to go.  Eight months later, I was on an alcohol free, grain free, sugar free, dairy free, spud free, soy free, legume free, vinegar free, caffeine free diet, as my body was having a great deal of difficulty processing anything not eaten by cavemen.

Meat, eggs, veggies and nuts became my staples and everything had to be prepared and cooked at home.  It was all very simple.  Cheap too, which was good, as I was living on sickness allowance by then.

Eating out was even relatively easy.  Most places serve some sort of steak and veg option.

The problems usually came when eating at other people's houses, because no matter how many times you tell people that you are happy with plain old meat and veggies, most people will feel uncomfortable serving just that to a guest.

But what type of bread can you eat?

You'd have to make it out of almondmeal.

Gluten free bread?

Made with grains.


Only if you home make the stock.

What about dessert?

Fruit's fine.

What about salad dressing?

 Lemon juice and herbs.  Nothing pre-made.

What about mustard?  Soy sauce?  Tomato sauce?  Stir fry sauce?  Garlic marinade?  Sweet chilli?  Hollandaise?  Bolognese?  Chicken tonight?  Mayo?  Miso?  Miso soup is fine, surely!

No!  It's all processed, most of it contains sugar, and miso is made out of soy!

What can I serve you then!?

Just cook a piece of meat and steam some veggies and put them on a plate!

Mpff.  What about coffee?

Herbal tea is fine.

This conversation would happen over and over.  Often with the same people.  I was very easy to cook for, only able to eat about five things, but somehow everyone seemed to find it very frustrating.  People want to do something special when they invite you over, so I became an insurmountable challenge - one people would usually fail by trying to get around it somehow, the biggest pitfall being products labelled 'organic' when that's neither here nor there.

Thankfully, I no longer need that diet.

My options started to open up as my health improved, but I still had restrictions.  Increasingly though, so do a lot of other people, for both health and moral reasons.  I remember going to a home made pizza night with some friends where the pizzas were labelled thus:

  • Meat wheat
  • Veggie wheat
  • Vegan wheat
  • Vegan no wheat
  • No wheat no cheese
  • Veggie no wheat

A bit non traditional, but we were all covered, and making our own pizza dough was fun.

But what about Easter?  Hot cross buns have been one of my favourite foods since I was little and chocolate is something I've never managed to cut out entirely no matter what diet I was trying to adhere to.  Even when I was restricted to the meat and veggie diet, I still made exceptions for these foods from Good Friday to Easter Monday.  The setbacks were just worth it.  And, of course, this year was no exception.

This Easter though, my family gathering had a great menu with a dish to suit any and every dietary need (the guests included one vegetarian, three people with gluten and dairy intolerances and two diabetics).

  • Gluten free veggie pie
  • Dairy free potato salad (honey mustard)
  • Regular potato salad
  • Green salad (dressing on the side)
  • Dark chocolate and/or milk chocolate
  • Gluten/dairy free banana muffins with dairy free frosting
  • Gluten/dairy free orange almond muffins
  • Soy chai rice pudding with meringue (yes, you read that correctly). 

Yum (Though, the diabetics kept the insulin on hand and my heart was beating out worrying rhythms as I went to sleep).  And we had Easter at my place, so I got to keep the leftovers.

Apr 1, 2012

Mind/Body Illness? Give me a break.

Alright.  I've been reading a whole lot of articles about which ME/CFS treatments are best, which treatments are harmful, the political bitchfight over who gets to treat it and the, often grossly ignorant and opinionated, comments that inevitably follow.

I've also had the opportunity to catch the new documentary Voices from the Shadows down at ME/CFS Victoria, which they were nice enough to let me watch in their office, despite it not yet being available to the public for purchase.  (Thanks!)

One thing that has become pretty clear to me, over all this watching and reading, is that the concept of the mind/body illness has got to be kicked to the curb when it comes to ME/CFS.  It's a wishywashy idea that only further muddies the numerous and vague descriptions of what ME/CFS is.  It helps no one.

I'm not saying I'm against the holistic approach to good health and well being.  When used appropriately, it's amazing what nutrition, exercise, massage, supportive counselling and meditation do for the body; especially if the body's ills are initially caused by stress or bad eating habits (and let's face it, most of us have ills caused by both).

For people with ME/CFS the holistic approach can aid in the management of symptoms.  When your body becomes highly sensitised to any form of stress and your digestive system decides to stop accepting processed food, the holistic approach can actually be a bit of a lifesaver.

This does not mean, however, that the term "mind/body illness" has any place in discussions regarding ME/CFS research or treatment trials.

ME was classified as a neurological illness by the WHO in 1969.  Mind/body strategies help people with ME/CFS the same way they help people with MS, Cancer or Heart Disease (just to pick out a few); they keep the body as strong as it can be under the circumstances and the mind thinking positively, but they are not curative.  And they can be harmful if the practitioner doesn't have a good understanding of ME/CFS and its effects on the body's limits.

So let's acknowledge all that, drop the label of "mind/body illness", and get real about finding the bio-medical explanation for why we all got ill in the first place, because right now, this scientifically meaningless label is being used politically to justify the psychiatric model of treatment for ME/CFS, and the negative impact on the direction of new research is massive.

Despite ME/CFS being officially designated a neurological illness, funding for ME/CFS research is current being directed toward a particular school of psychiatrists; the best funded ME/CFS trials so far being the Pace Trials, testing the effectiveness of Cognitive Behavioural Therapy and Graded Exercise as treatments.

To those people sitting back and scratching their heads as to why ME/CFS advocacy groups are protesting so vehemently against these trials when researchers are "just trying to find effective treatments," what you need to understand is that these treatments have already been in use since the 80s with very mixed and sometimes disastrous results for patients.

The researchers conducting these trials have long taken the attitude that there is no bio-medical cause for the symptoms of ME/CFS and so focus on correcting "false" illness beliefs.  Their view is that the illness is an irrational fear of activity which has manifested physically.  It's a bizarre attitude to take with a condition officially designated as neurological (WHO classification code G93.3) and neglects whole areas of study which have yet to be properly explored.  

The Pace Trials were not conducted to find new information on how to treat a largely mysterious illness; they were conducted to justify work already being done and long criticised by patient advocates as inappropriate and potentially harmful.

It's also important to note that the Pace Trials used the Oxford definition of CFS as their selection criteria; the most open and vague criteria available, allowing people with pretty much any fatiguing illness into the group, including clinical depression.  They then systematically removed anyone with genuine neurological symptoms from the trial (you don't need to have them with Oxford defined CFS).

This basically means that anyone with genuine ME, as defined by the WHO in 1969 and the Canadian Clinical Guidelines (now officially accepted world wide), was excluded from this particular trial.

As a result of this, all the Pace Trials prove is that when you use CBT and GET on subjects with a range of illnesses, a good percentage will experience some benefit.

The medical community already knew this.  The trial was a massive waste of money (over 5 million pounds).

And that's what people are really upset about.  Funding.

If the psychiatrists involved were simply using a small percentage of research funding available to look into one of many potentially beneficial treatments for people with ME/CFS, I doubt anyone would object too much. Unfortunately, by adamantly claiming ME/CFS to be a mental, or now "mind/body", illness, they are actively directing funds away from bio-medical research.

Imagine all the money for MS research being diverted away from neurologists and immunologists so that psychiatrists could attempt to prove that positive thinking and exercise was the best medicine.  It's ludicrous.

Money for bio-medical research for ME/CFS generally comes from patients and the fundraising efforts of advocates.  As a result, there is not much of it.

Despite this, over 4000 studies have been done on potential bio-medical causes of ME/CFS, showing irrefutably that there is a biological basis for this illness.  Evidence for a bio-medical cause of ME/CFS is on par with that for MS.  Neither have a single diagnostic test, but there are definite signs to look for in SPECT scans, EEGs, Thyroid Function, MRIs, Heart Rate, etc, etc, etc.

Here's a good page to look at if you want to see the comparison between ME/CFS and MS in detail: The Hummingbirds Guide.

Unfortunately, the ideology promoted by the psychiatrists involved has become very deeply ingrained in the medical, social and governmental approaches to ME/CFS over the last 30 years, and bio-medical findings are being largely ignored at the expense of millions of people suffering world wide.

Dr Nancy Klimas summed the situation up fairly well in an interview with the New York Times in 2009: 

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V."

In 2012 things are improving slowly.  There are studies going on in Norway looking into a drug suppressing immune responses which are getting some decent support.  The XMRV retrovirus theory seems to have been a bust, but at least the publicity around it convinced a lot of punters to take ME/CFS a bit more seriously as a physical condition.

There has also been publicity around a number of deaths caused by ME/CFS, helping people to see how very serious the condition can become, several of which were also the focus of Voices from the Shadows which you can now watch here.
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