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Treating Chronic Fatigue – tracking progress through symptom scoring

21 May 2014

When your treating practitioner asks “How are you feeling? Any progress?”, it’s not always easy to recall exactly how you were feeling a couple of weeks ago, let alone 2 or 3 months ago. It’s a big question when there are so many things going on.

You may think to some of your primary symptoms and feel there has been an improvement, but to what degree? And what able the long trail of secondary symptoms?

Perhaps some symptoms have made progress while others have slipped. Perhaps a symptom was moderately good for a few weeks but then really bad last week. How do you quantify that?

For this reason, regardless of your chosen treatment, I believe it is helpful to have some kind of scoring system in place to track progress.

Chronic fatigue symptom scoring

Why track progress through a chronic fatigue therapy?

We want to be able to confirm that treatment is bringing about some positive change and that we are continuously making progress throughout the treatment course.

Tracking progress through symptom scoring is quick and easy and beneficial on so many levels.

Identifying early signs of change

Chinese medicine looks to see some indication of change from fairly close to the beginning of treatment. The more longstanding, severe and complex the illness, the longer it may potentially be before those early signs are seen, however we wouldn’t treat blindly for months and months without any change at all.

We would usually hope to start seeing a benefit within 4-6 weeks. Sometimes the early benefits are obvious, but when the symptom picture is complex, symptom scoring can help identify those early signs of change.

Tracking secondary symptoms of chronic fatigue syndrome

Symptom scoring helps us to monitor the many peripheral symptoms of CFS, many of which may only appear sporadically and tend to be easily forgotten when they haven’t been noticed in a while.

In the clinic, all of your symptoms are used to confirm diagnosis, guide treatment and monitor progress. The symptoms are all manifestations of the same base imbalance or “disharmony”. As we slowly correct the imbalance through treatment, the symptoms will start to fade, and we know through experience that some resolve quickly and others can be very stubborn. If, through scoring, we see no or very little change to some of the primary symptoms, but we can see that many of the lesser symptoms are dropping away, we know we are on the right track, and we just need to give it more time.

Monitoring the more stubborn symptoms of CFS

It is common to see many of the easier to treat symptoms fade in the first few months. Then by the 4 or 5 month mark, we are often just left with a core group of the more stubborn symptoms. These tend to include issues like gut sensitivities, sleep disturbances, brain fog, and the fatigue.

Scoring can help us confirm that we are still making progress with the more stubborn symptoms on the list, and later in the treatment course where the rate of change might potentially be slower.

Showing connections between responses and activities

Of course, one of the very frustrating things about chronic fatigue and associated illnesses is the potential time delay between cause and effect. Symptom scoring can help you make connections between certain activities and a subsequent health response.

An example is using scoring to help judge the response to the type and intensity of any physical activity you may be doing. You might see that physical strength had been improving on a program of walking for 15 minutes a day, but now that you’ve stepped up to 20 minutes, your joint pain scores have gradually worsened.

Monitoring the peaks and troughs

Most chronic fatigue sufferers know that symptoms tend to cycle up and down. There are periods of feeling relatively better and periods of feeling relatively worse. While these peaks and troughs usually continue as you progress through treatment, we are looking that over time the better periods become better and more extended, and the crashes less frequent, shorter and less deep.

At each down period, it can be difficult to recall the details of the last one. When there is a scoring system in place, we can easily compare this one against the previous few. If things are moving in the right direction, we should see the scores improving one down wave against the next. Even though you may be feeling poor, seeing that these crashes are increasingly less severe, can be quite helpful for lifting your spirits.

Formal fatigue scales

There are many fatigue scales out there, most of which are designed for research purposes. They generally aim to classify people for inclusion, or not, in studies and trials.
One of the issues with selecting a recognised scale is many are focused on classifying people as having CFS or not. This isn’t particularly relevant to a Chinese medicine treatment. We offer treatment for those with ME/CFS, but we also treat fatigue that falls outside of this diagnosis. While a formal medical diagnosis is interesting, at the end of the day, Chinese medicine relies upon its own entirely separate system of diagnosis and disease classification.

In saying this, there are certainly generic fatigue scales that can be used to quantify fatigue, myalgic encephalomyelitis/chronic fatigue syndrome or not. I often recommend the well tested Fatigue Severity Scale1.

Fatigue severity scale

Many research studies have tested and adopted this scale. One study2 suggested that the fatigue severity to be expected for a CFS diagnosis would be > 4.8 on this scale, though this would not be enough to make a diagnosis.

A scale like this can be used at the beginning of treatment, where fatigue is a major symptom, to provide a baseline for this particular symptom.

Because fatigue is but one symptom of chronic fatigue, and not always a particularly problematic one, a broader scoring system is more appropriate. I’d usually add the Fatigue Severity Scale to a broader scale like the one below.

1) The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. Arch Neurol. 1989 Oct; 46(10):1121-3.)
2) Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity. Leonard Jason, Jason Meredyth Evans, Molly Brown, Nicole Porter, Abigail Brown, Jessica Hunnell, Valerie Anderson, Athena Lerch. DSQ, Vol 31, No 1 (2011).

Our suggested chronic fatigue scoring method

This scoring method is not intended to diagnose, but rather monitor progress through treatment. It gives us a record of the severity of symptoms throughout the treatment course.

Using a table, ideally in a spreadsheet so you can easily calculate an average:

1) List your symptoms. The order is not important.
Common symptoms are: fatigue, headaches, migraines, dizziness/vertigo, tinnitus, light sensitivity, poor mental clarity, poor short term memory, muscle stiffness, migrating pains, muscles ache, joint pains, heaviness of the limbs, weakness of the limbs, cold hands and feet, pins and needles, numbness, muscle twitches, cramps, sensitivity to cold, overheating, excessive sweating, anxiety, depression, irritability, sleep disturbances, excessive dreaming, palpitations, low appetite, bloating, nausea, diarrhoea, constipation, etc.

2) At the end of each day put a score next to each symptom. 0 is no symptom at all. 10 is the worse you have ever experienced. Don’t agonise over this. Just put a quick number down.

3) At the end of each month, or even week if you like, calculate an average for that symptom.

4) It is also worth noting on the chart, activities which might over time influence your symptoms. These could be type and duration of exercise, hours of sleep, to bed and wake times, hours of work. If you know you react to certain foods, how much of that food you have had – it could be wheat, dairy, sugar, alcohol etc.

One of the draw backs is this doesn’t provide a very accurate pre-treatment baseline. Someone may start treatment feeling relatively good, only to soon after experience the next down wave or “crash”. For this reason, it is most helpful after it has been in use for a few months.

Feel free use the following spreadsheet template and example:

Chronic fatigue symptom score sheet

Best wishes. We hope you find this information useful.