Chronic Fatigue Syndrome (ME/CFS) is complicated. That’s bad enough for patients but for many physicians it’s entirely too complicated – the last person they want to see walk thru their office door is a chronic fatigue syndrome patient. Given the lack of chronic fatigue syndrome specialists – that’s a big problem – there are no substitutes for educated primary care doctors.
Dr. Lerner believes his Energy Point Index Score would help doctors greatly with their ME/CFS patients and that it should be on every doctor’s office wall. The EPIS is a simple chart that allows patient to quickly evaluate his/her activity levels. It ranges from zero (Bed-ridden) to 10 (Normal).
A Key Factor - If Dr. Lerner is correct your ‘energy level’ is the key factor in this illness. If that’s so then the fact that most doctors don’t have a clue how to measure it is a real problem. The most commonly used measure of energy – called the Fatigue Severity Score (FSS) – is a list of multiple choice questions that focuses on symptoms, requires statistical analysis and takes a lot of both the patients time and the doctor’s time. It’s basically a research tool - which was fine in the days when-fatigue or energy level was considered at best a secondary symptom -but is unacceptable now that we have a disease in which it takes central place.
Of course many other symptoms are present in this disorder but Dr. Lerner asserts that the beauty of the EPIS is how beautifully it charts not only ME/CFS patients energy levels but their other symptoms as well. He’sfound that the lower your Energy Point Index goes the more types of symptoms you have and the worse they are. Conversely the higher you go on the Index the fewer symptoms you have and what an interesting insight this is; symptoms really are a function of energy in this disease. If you can reclaim your energy your aches and pains and problems - most of which you probably didn’t associate with reduced ‘energy’ start to drop away. On a basic level Dr. Lerner believes this disease really is all about energy – and this is one reason he’s pushing to have the EPIS in every doctor’s office.
Defining Improvement – The EPIS also charts improvement (or relapse) in a rather definitive manner. Each level represents a large change in functionality and health. The average score of a patient entering Dr. Lerner’s clinic is between three or four (out of bed 2-6 hours a day) but he sees patients starting out at one or two (out of bed 30 minutes-2 hours a day).
At level five you still have a chronic fatigue syndrome diagnosis but you can with difficulty make it through a sedentary 40 hour week job. Level six is a big milestone because you can start devoting some energy to outside activities other than work. Levels six is the first time you don’t meet the CDC criteria for CFS.
If you can make it to level 7 you can have a fairly normal lifestyle except that you can’t exercise. If you’re a patient of Dr. Lerner’s when you get to level 8 you’ll probably start tapering off your medications and you can start a light exercise program. Dr. Lerner has found that pacing is a critical part of recovery. Until you get to eight or nine any exercise is going to push you back down to a lower level. The EPIS is also helpful in disability evaluations because it gives disability judges a quick and easy way to assess the patient’s functionality. Patients can also use it in their day-to-day lives to assess how their treatments are going, if they’re doing too much activity, etc.
An Official Energy Index - Other rating scales have been developed for chronic fatigue syndrome. Bruce Campbell at CFIDS Self Help has one. Dr. Lerner’s has a leg up because it’s been validated against the Fatigue Severity Score and in several studies. Dr. Vernon recently argued that the ME/CFS research field needs standards – what better place to start than at energy – a key problem in chronic fatigue syndrome (ME/CFS). An IACFS/ME stamp of approval of an easy to assess energy rating would help get an Energy Index into doctor’s offices. I say let the competition begin.
An “In” in the Office – - I see the EPIS as more than just a valuable assessment tool. I see it as something of a blow to medical ignorance. Yes, it will help Doctor’s deal more effectively with ME/CFS but it will also educate them about the severity of a disease is too often dismissed as ‘fatigue’. Look at the first quarter of the index;
- 0 - Bedridden
- 1 – Out of bed 30 to 60 minutes a day
- 2 – Out of bed sitting, standing, walking 1 to 2 hours a day.
- 3 – Out of bed sitting, standing, walking 2 to 4 hours a day.
Here we’ve gone through almost 40% of the chart and the best we’ve gotten to is sitting or standing or walking 2 to 4 hours a day. The Energy Point Index Score chart looks like a very effective way of getting MDs to get that this is a severe and often disabling illness.
It would be great to see one on every primary care doctor’s wall.46 comments