CFS definition- the CDC 1994 definition

There are multiple definitions of CFS/CFIDS/ME. Which not only makes it confusing for patient and doctors, it can make diagnosis difficult, and even affect scientific research. I’m going to lay out the different definitions here, to serve as a guide for those who are looking for more clarity. I’ll start today by offering the definition used widely in the US, and in future posts, I’ll talk about the UK and Canada.

Note: I don’t support or agree with many of these definitions- they are hard to understand, difficult to use as a tool for diagnosis, some were written by the experts in the field while others were not, and some have not been updated for decades despite new research and evidence. I am merely providing you with the information your doctor may be working with, with the hope that you may be able to better communicate.

The CDC (Center for Disease Control and Prevention) in the US came up with this criteria in 1994. Most doctors/insurance companies use this definition when diagnosing a patient. These criteria are also known as the Fukada definition of CFS. You can find the full set of guidelines here: http://www.cfids-me.org/cdcdefine.html

The basics are as follows:

1. The patient must have fatigue that is long lasting (chronic), from an unknown cause (unexplained), and must not be life long (ie not since birth). This fatigue is not made better by resting, and has affected likely numerous parts of your life.

2. For six months or more, the patient must have at least HALF of the following symptoms:

Difficulty with memory or concentration

Sore throat

Tender lymph nodes

Muscle pain

Joint pain (without swelling or redness)

Headaches (that are different from any kind you had before you had CFS)

Feeling tired even after sleeping

Fatigue from physical activity. The kind of fatigue that lasts more than 24 hours

3. The patient should be tested to make sure the symptoms are not caused by another condition. A few are listed specifically:

Hypothyroidism

Sleep apnea

Narcolepsy

Iatrogenic conditions (like side effects of medications)

Illnesses that have been treated but came back such as Hepatitis B or C

Bipolar affective disorders

Schizophrenia

Delusional Disorders

Dementia

Anorexia Nervosa

Bulemia Nervosa

Alcohol or substance abuse

Severe Obesity (defined as a BMI greater than 45)

Routine and further tests should be done to rule out other diagnosis such as Multiple Sclerosis

4. There are some conditions that do NOT rule out the diagnosis of CFS (meaning you could have one of these AND CFS, or your previous diagnosis was wrong and you only have CFS):

Fibromyalgia

Anxiety Disorder

Somatoform Disorder

Nonpsychotic or melancholic depression

Neurasthenia

Multiple Chemical Sensitivity Disorder

Treated Hypothyrodism

Treated Asthma

Treated Lyme Disease

Treated Syphillis

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Personalized gift tags DIY

Crafting is my “me” time. Being creative helps get me out of my head, and is such an easy way to change from thinking about what I can’t do to what I can do.

This year, I wanted to decorate some special gifts with a little extra something. These little clay gift tags don’t require much time or effort. But add that little home-made (aka I spent a little extra time making something just for you) feel!

You’ll need:

Air dry clay

Old cookie cutters

A rolling pin

A mat to roll it on (or just a plastic bag!)

A straw (the kind you drink out of)

And a place to let the clay pieces dry- preferably a wire rack, but a plastic plate works

If you plan on painting them, you’ll need:

Craft paint

Paint brushes

A pencil

Clear sealer/top coat (I went with a satin finish)

To finish it off/optional:

Ribbon

Felt

Pinking sheers (to cut the felt)

How To:

1. Roll out some of the clay to about 1/8″ thick

2. Use the cookie cutters to cut out fun shapes. I used old biscuit cutters for a round shape with a pretty edge. Smoosh any the leftover clay into the remaining clay block, and store in an airtight bag.

3. Use the straw to punch out holes (for the string) – either one on the top, or one on each side

4. Carefully move the clay gift tags to a rack to dry, or put on a plastic plate and turn every few hours until dry (which takes about a day)

5. Draw with a pencil what you want to paint onto your clay tags (you can skip this step, but I suggest it for spacing lettering)

6. Paint – get creative! Let dry and touch up if needed. Let dry again.

7. Paint (or spray- depending of what kind you purchased) with a clear sealer or top coat and leave to dry

8. Add any final touches, and put them to good use on all your Holiday gift packages!

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What works- Vitamins

Vitamins have really helped. Personally, I believe it’s because most chronic conditions have some underlying issue with the gut (which is so intertwined with your immune system they are inseparable). If your gut isn’t working properly, it’s not crazy to make the assumption you likely aren’t taking in enough essential vitamins and minerals (maybe due to lack of proper digestion, or maybe because your diet is restricted or lacking).

I believe that in my case it’s a combination of a very restricted diet (which greatly helps in relieving symptoms but reduces the variety of nutrients in my diet) and a gut that just doesn’t want to work well (that’s an understatement).

But how do you know what vitamins to take? The FDA here in the US restricts what manufacturers of vitamins and minerals are allowed to tell you about what each supplement is good for (and often they have a wide variety of uses). Instead there is confusing and sometimes contradictory information everywhere you turn- most prevalently on the internet.  So who can help you figure out what is right for you? There are some options: 1. Find a more open-minded physician or dietician who knows more about your condition and find out what supplements (s)he recommends 2. Find books written by specialists about your condition that offer suggestions about supplements 3. See non-western doctor who you trust (shop around if you need to)- but herbalists, acupuncturists, and naturopaths are a good place to start your search.  This last option may seem like the craziest option if you were raised to believe that western medicine is the only trust worthy option, but non-western practices will tailor the treatment (in this case supplement suggestions) to your specific needs. That’s because they believe that you are an individual, not a disease, and what your body needs might be different from someone else’s needs- even if you have the same condition.

Personally, I started with the book path. Using books, and not people, meant that not everything I tried was going to work for me, so trial and error has played an important role.  I have adapted and added to my vitamin intake over the years, as my research has led me to new ideas. I then try it from a trusted source, and use my own body to guide me. There have been pills that I didn’t react well too, and I stopped taking them right away. But the vitamins and mineral supplements that do work should have a mild positive effect. They won’t “cure” you overnight. The point is to remove or reduce symptoms, allowing for a fuller life.

In my journey, I started with the book: Hidden Food Allergies by James Braly and Patrick Holford. I had read another book by James Braly and trusted his judgment. I also had researched delayed onset food allergies, and it felt right to me. His list of supplements and what to take them for was a great starting point, and is the reason I take most of the supplements I take now. Once I knew what I wanted to try, I did some research and found ones that were free of my allergies and intolerances. I have had good luck with The Vitamin Shoppe here in the US. Their online store sells their own brand, which clearly labels what is and isn’t in each supplement, and they carry other brands that do the same thing. In the UK, I had decent luck with Holland and Barrett. It’s worth it to “do your homework” and find an option that is suitable to your specific needs- ie gluten-free if you avoid gluten.

In case you’re curious, here’s a list of what I take, and what each does for me. You may have a completely different list, even if we have similar conditions- it’s all about what does work for you.

Supplement name Why I take it Where I heard about it
Glutamine Healing the gut Nutritionist/Dietician
Vitamin C Immune system Book*
Quercetin Allergies (food) Book*
Caprylic Acid Help heal the gut Book*
MSM Pain, especially joint pain Book*
Magnesium Headaches, stress Book*
Vitamin D A blood test showed I’m low My western Dr
Folic Acid Mood Trial and error
Omegas (Flax seed oil pills) Brain, body functions Multiple sources
Primrose oil Calming, sleeping Online
Aloe Vera juice Demulcent (soothing to digestive tract tissue) Trial and error

Book: *Hidden Food Allergies by James Braly and Patrick Holford. 2006.

What works for you?

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Lost

I am feeling impatient with the uncertainty of the time scale and path of my healing. Never know if my experience, thought, idea is a helpful one or a hinderance. If I’m just around the corner, or have years to go.
How can I align goals, aspirations, and even identity with such an uncertain, fluid sense of self?
Feeling a bit lost.

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Feeling stuck

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Worth it

There are times in everyone’s life where they have to stretch themselves, be it financially, emotionally, time wise, or even taking on extra stress. Sometimes it’s for something we have deemed “worth it”. Other times it’s an unexpected life event. After a while something gives and we go back to the amount we can deal with- this new state of being isn’t sustainable. We just can’t live without emotional support or respect, physically exhausting ourselves everyday, or feeling stuck in a downward spiral.  Not indefinitely. (I mean “can’t” in more than just a physical, breathing and blood pumping, sense, but in an emotional and/or mental sense- a “whole being” sense).

Life with CFS means my stretching moments are of a smaller scale than others’. When I stretch, it’s to do something most people do day after day, month after month. I relish the self-induced stretching, because it’s usually to do something that makes me feel normal and part of the world. And when life throws a curve ball, it usually takes a bigger toll on me than it would on someone without CFS. Like getting an infection, or a constantly changing end goal (or doctors appointment).

Over the last few months, I have purposely stretched for a few events that I deemed “worth it”. My 10 year uni reunion. My brothers wedding. I am currently taking a staggered, six-weekend permaculture course (where each weekend is as full and stressful as the reunion and wedding) where I will get certified to design permaculture gardens. And I am hoping to attending a friends wedding this month.  I have learned a good deal from these times of stretch, and have suffered from them too. For weeks afterwards I deal with symptom flare ups, and need outside help (such as acupuncture) just to help my body find it’s way back to my new-normal again.

But learning doesn’t equal acceptance. I get frustrated. Angry even. I keep hoping the next event won’t have the same devastating effects to my body and health. A limp pool of flesh is hardly an existence. And I find myself torn. Do I avoid all events and feel the full, crushing weight of giving up (different from letting go), or do I continue to pay the physical admission price for the emotional joys of being able to take part?

I have (carefully) chosen to pay the price. Obviously I have to prioritize. Though explaining that my health comes first is not always easy. Making sure I make it back to new-normal after every event is the way I justify my excursions. If I can’t, my fear is that a second blow would have devastating, long lasting (possibly irrevocable) implications. Never knowing what’s around the corner health wise is terrifying. I could wake up tomorrow bed bound. Or maybe in a few months I’ll be able to do more than I can today, and perhaps a few years from now I’ll be able to take part in so much more of life. Living with hope and fear is not always easy- weighing risk against possible gains- especially with so much at stake. But when choosing when to stretch- make sure it’s for hope’s sake, not fear’s.

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Salt pickles

The first time I tried making salt pickles (or fridge pickles) they came out way too salty. Likely because I used the wrong cucumbers; pickling cucumbers are not common in the UK (in fact I never found any).

Back in the US, pickling cucumbers are all over the place this time of year! And good thing too because I love pickles.

Here is the recipe I’ve adapted. It’s my go-to recipe for pickles and I’ve already enjoyed a few jars this year. They’re GF- they even don’t have any vinegar (vinegar is usually made from rye and corn), and they are low FODMAP because I’ve taken out the garlic.  Enjoy!

Salt Pickles (aka quick pickles or fridge pickles)

4 quarts water

6 Tablespoons coarse kosher salt

18-20 Kirby cucumbers, or any pickling cucumbers, well washed

2 Tablespoons of whole spices (I use a mixture of coriander, fennel, mustard seeds- in descending order)

1 large bunch of dill, including any flower heads and even seeds, washed (preferably home grown!)

In a large pot, boil the water with the salt, stirring until the salt is dissolved. Remove from heat and leave to cool for 10-20 minutes.

Prepare wide-mouthed jars by running them through the dishwasher or boiling them and their lids.

Cut the tops and bottoms off of the cucumbers (to fit the jars you have) and slice into 8, length-wise slices. Pack the cucumbers vertically into the jars along with the dill and spices, tightly-pack each jar.

Fill the jars with the salted water (brine) until the cucumber spears are completely covered. Put them in the fridge and wait 1-3 weeks until they are pickled to your liking. These are a very mild flavored pickle, and will still have a little “cucumber” taste. They will also stay pretty crisp.

If you can’t wait you can also try the following: “Cover the jars with cheesecloth, secured with rubber bands, or loosely with the lids. Store in a cool, dark place for 3 days. After 3 days, taste one. The pickles can ferment from 3 to 6 days. The longer the fermentation, the more sour they’ll become. Once the pickles are to your liking, refrigerate them.”

Adapted from Arthur Schwartz’s Jewish Home Cooking’s “Kosher Dill Pickles”

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Currant coulis and meyer lemon sorbet

Working in a community garden has given me access to fruits and veggies I don’t have room to grow in my containers. Though plenty of sources state you can grow squashes like courgette/zucchini in a container- personally, I have never had any success. Those are in full harvest mode at the community garden and I have already enjoyed a few.

Recently the currant bush was ready to pick, and we got a good amount out of that one, shaded bush (about a cup of berries). If we split that up between us though, we would each get little more than a garnish. So I volunteered to take them home and make something delicious. No pressure then.

A few days later, some classmates were working on a pergola in 90F heat in the dead of the day. I knew I would be no help with the manual labor (more than likely you’d find me lying, passed out on the ground after 5 minutes in that sun), but I realised I could help in another way- refreshments. I whipped up a half batch of this raspberry and red currant coulis (a strained, fruit “sauce” for desserts). I initially purchased some lemon sorbet to go with it as I was out of energy. But later that week I whipped up a double batch of this meyer lemon sorbet, and the combo was fabulous. Both promised to be sweet and tart. Despite all the tartness of currants, the sweet fruitiness of the coulis really calmed the tart of the sorbet- so don’t be stingy!

Both recipes are pretty easy. And if you leave the dishes to soak to clean later (or have someone else do the dishes!), they aren’t too energy intensive. In fact you can do them in stages- heat, leave to cool, transfer to the fridge, and finish it off (ice cream maker or strain) when you have had a rest. And once in the freezer, ice creams and sorbets last quite a while- so can be made well in advance. So make a double batch like I did! (in fact right now in the freezer I have raspberry sorbet, coconut cherry ice “cream”, and the meyer lemon sorbet. Sadly we already finished off the blueberry mint, and I gave my brother all of the mango coconut. I think the ice cream maker attachment has paid for itself by now!)
What cold treat have you made this summer to keep cool?

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DIY plant markers

There are so many different DIY herb marker ideas on the internet today, it’s hard to choose just one. In my own garden, I have happily gone without. Except those times when it was my husbands turn to go out and pick some herbs and I had to describe the herb, or which pot it was in. But clearly it did not bother me enough to warrant making some signs.

These days I am taking a sustainability class at a local college and working in the attached community garden. There are so many of us, that information doesn’t always seem to trickle through. Turns out I know a good amount when it comes to herbs. But even I didn’t know what winter savory looked like (or rather didn’t know the name for winter savory when faced with the plant). And today I found myself pulling out an awfully large weed, only to remark after pulling it- doesn’t that smell just like horseradish? Oops.

I have finally succumb to signage. It’s not that I didn’t want labels, it’s that I knew it would take a lot of thinking to come up with something just right (and did I mention it need to be pretty much free). The markers have to be tall (to be seen from the path and to work with tall, bushy plants)- so that rules out cute painted rocks, or short herb markers. And it has to be made from things we already have or free things (like things that would otherwise have gone in the trash). We have lots of bamboo stakes, and those can be cut to varying lengths to accommodate all sorts of plant heights, so that was a great starting point. In fact, I really liked this idea I came across on pinterest:

But where to find all the wood for the label part? Hmm. I thought about stealing lots of paint stirrers- but stores have their logos all over them these days, and don’t usually leave them out anymore (too many crafty people maybe?). The last box to check for the plant markers – they needed to be able to withstand some weather. They would be outside all summer, maybe even year round in the perennials. And/or reparable or replaceable. So if not wood, then what?

It took me a long while to come up with my answer, but when I saw the water jug in the recycling bin, it came to me. I tested out some waterproof, oil based pens, and a sharpie on the plastic. The both passed the water proof test in the sink, but I liked the look of the sharpie best.

Putting them together, in comparison to designing them, was relatively easy.  Here’s how I did it:

Materials-

-empty plastic jug(s), preferably the slightly cloudy kind

-bamboo stakes (not old dried out ones)

-twine

Tools-

-small wood saw

-small chisel

-hammer

-oil-based water proof pen or sharpie (depending on the plastic you use)

-heavy duty scissors

-glue

How to:

Cut the bamboo to the length you want, remember a few inches or more will go into the ground. At the top start sawing straight down the center until you have enough bite for the chisel. Place the chisel in the grove left by the saw and hammer until you start to split the pole (about 3″ down from the top). Repeat with all the bamboo (make one for each marker).

Using the heavy duty scissors, cut the water jug. You want strips large enough to write out the herb names (practice on a piece of paper), and leave enough room to place the end into the bamboo slot. Next write the names on the plastic strips with the pen or sharpie and let dry (don’t forget to test a patch for waterproof-ness).

With the help of the chisel (if needed), open up the bamboo slit and slide in the plastic strip (with the plant name right side up!). Repeat with all the bamboo and labels. Use the twine to keep the bamboo and label together. Finish off the ends with glue if needed.

Viola! Enjoy your finished herb and plant markers.

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The gardener in me

Oh how my garden does grow. Everywhere I go I leave a trail of plants. It started as house plants in my dorm room (spider plants mostly), but it soon as I had even an ounce of outdoor space to call my own, my garden expanded (exploded really) into a container garden of herbs, flowers, and veg (all grown from seed too). I love experimenting, tinkering, and sitting idle amongst my plants. So really it should come as no surprise that I consider myself a gardener (least of whom myself).

Seedlings growing

But it was a surprise. “Me? oh no, but my mother is a gardener”. I lived by comparison, I was not the gardener my mother is, so I assumed that made me no gardener at all. I figured I’d never know as much as she did, and I liked different things; she likes landscaping and flowers. Turns out I’m more of an herbs and veg kinda gal, with at least one foot in the eco-friendly/sustainability side of things.

Silly as it seems, defining ourselves through comparisons is something we all do. I have come to realise- in realising how important gardening is to me- that comparisons don’t mean jack. How much something means to you, even if you only do that thing occasionally, is all that matters. Discovering what matters has been an important step in my journey. It has helped make priorities, goals, and start building a life that is right for me.

More than that, working in the garden; watching things grow, tending for living things, getting my hands dirty; I feel important, connected, useful. It has allowed me to care for something else when at times my life seems consumed by being cared for. I think gardening, growing things, can be incredibly healing.

Go ahead, try it.

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