Sep 17, 2011

Stuff That Helps

Since my last two posts have been relatively negative on what was actually intended to be a positive blog, I'm going to do a quick one on stuff that I find helps me deal with CFS.  I've had significant improvement since initially becoming ill, and though I can't guarantee these things will work for everyone, and by no means am I completely well, this is what works for me:

1. Trust what your body is telling you.

If you've woken feeling like you've been hit by a tonne of bricks, it might be a good day to stay in bed and eat healthy food.  Resist the temptation to struggle on through it and eat sugary junk to keep you moving.  Also resist the temptation to drink V, Mother, Red Bull, Monster or Coffee (the effects are short lived and even perfectly healthy people get palpitations from drinking some of these).

2. Stay as hydrated as possible.

When I first got sick, I would be desperately drinking about five litres of water a day.  I would wake every morning with the equivalent of a hangover, simply because I'd gone a whole eight hours without a drink.  I've found the best way to battle this (other than drinking inordinate amounts of water) is sports drinks, like gatorade, and making sure you get enough salt (it's actually the salt in the gatorade that helps you retain what you drink).

3. Getting rid of as much chemical/scented stuff as you can, especially from the bedroom.

Organic sheets and pillows are a good start (can't recommend organic mattresses though as I've yet to find a brand that doesn't stink to high heaven with whatever "natural" products they've treated it with).

Avoid perfumes, incense, spray/scented deodorant or chemical cleaning products of any kind.  I find 100% natural oils are pretty okay if you really want a scented house.  Some unscented, roll on deodorants are alright.  Crystal deodorant is safest.

Don't make the mistake of thinking that just because something is advertised as "organic" it must be safe.  Test out shampoos, laundry liquid, soap, make-up, moisturisers, etc to see what effects you the least.

Be careful when buying furniture.  Treated wood is quite toxic.   I tend to leave new bedroom furniture in another room for a month or two before using it.  It allows the chemicals to fade.

4. Avoid mould, mildew and mustyness.

Harder to do than it sounds.

About a year after getting sick, I realised my worst 'crash' periods were correlating to which set of sheets I had on my bed.  One was an old set that had spent a few years in a chest of draws before I grabbed them out when I moved back in with Dad.  The other was fairly new.  Whenever I used the older sheets I found that fatigue, lung capacity, headaches and particularly the heart related symptoms - like palpitations and tachycardia - were a lot worse.

If you find that something in your environment makes you feel awful, toss it.

5. Fresh Air.

No matter how much you try to remove the chemical and musty stuff from your house, the home environment is never going to be completely free of things that make it harder to breathe.  I find the air outside to be infinitely better (except in the dead of winter when one of my neighbours uses a wood heater and open windows let the smoke in).

I find I wake up feeling a lot better if the skylight on a window is left open at night.

6. Food.

Everyone I know with CFS has food sensitivities.  Take the time to work out what they are and avoid the bad foods.  For me it's dairy and a lot of processed things (I haven't been able to nail down what exactly, but raw foods are always better than the mysterious list of chemicals on most things packaged).

I've also found there are foods I can eat on a good day, but not on a 'crash' day.

It's also good to eat food which is easy to digest.  Fruit, veggies, fresh meat and eggs are a lot easier to digest than complex carbs.  I find the caveman diet is usually the way to go on a bad day.

As I said before, these kinds of sensitivities differ from person to person with CFS and this is just what I find works for me.  I'd encourage people with CFS to play around though, and really try to figure out what environmental changes can help.  For me at least it's made a massive difference.  

Sep 15, 2011

Death threats against Wessely? Why am I not surprised?

Living in Australia I managed to miss that this whole media campaign was going on in the UK.  Apparently there were a number of articles in reputable papers along the lines of this:

Chronic fatigue syndrome researchers face death threats

Wessely now feels safer in Iraq than he does in Britain!

I'd be lying if I said that my first reaction to reading this was not a gleeful laugh.  The man is frankly one of the more evil people alive today, and I hope that history eventually vilifies him for the suffering he's caused.

That said, I certainly don't wish the man dead.  I also could never condone the way some patients have responded to the XMRV research trials.  Scaring off the legit researchers does no one any favours.  Scientists unfamiliar with the dodgy research and mistreatment of patients which has given rise to such extreme emotions are understandably a bit shocked by the hate mail they receive when their findings don't back the preferred theory.

I think it's important to point out though, that no actual violence has been reported in these articles.  It's all just talk.  Inappropriately aggressive talk, but talk just the same.

I also think the people writing the articles need to do a little more background research.  Wessely comes off in this article as the innocent victim.  Nothing is said of the controversial nature of his research methods and selection criteria, nor of the claims by medical professionals and former patients (and families of deceased patients) that his treatments are unethical and even dangerous.

Here's a very well written and researched article by Professor Malcolm Hooper in response to the Guardian article.  Hooper is a Pharmacist, Medical Advisor and Advocate for CFS patients.
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