How do you rate fatigue, or the myriad other symptoms that come with chronic fatigue syndrome (CFS or ME/CFS)? How do you rate your overall functionality (or lack thereof) in a way that doctors can understand with just a glance at your chart?
When it comes to other major health issues, we have scales. Any oncologist can look at any cancer patient's chart and see exactly what disease stage they're in. As flawed as the standard pain scale may be, at least it's something. Yet with millions of people's lives derailed by chronic, debilitating symptoms we have no universally recognized way to describe where an ME/CFS patient "is" in terms of disease severity or recovery.
One noted doctor and researcher says he has the tool we need to gauge these things. Dr. A. Martin Lerner, of the Treatment Center for Chronic Fatigue Syndrome in Michigan, has been using the tool he developed for years and has scientific studies to validate its effectiveness. Dr. Lerner was a practicing infectious disease specialist when he developed ME/CFS, and in the 20 years since his recovery, he's dedicated himself to researching the condition and treating other people who are living with it.
The tool is called EIPS, which stands for Energy Index Point Score. It's a 0-10 scale that measures not just fatigue, but functionality. At 0, you're bedridden and can only get up to use the bathroom. Each step up the scale represents a significant improvement, with gradually increasing lengths of time out of bed. At a 6, you're considered in the recovery stage, and at 10 you're fully functional once again. See the full EIPS chart here: Energy Index Point Score. The abstract of the clinical study validating it as an effective tool is here: Validation of the EIPS in ME/CFS.
Dr. Lerner is working to get the word out to doctors and patients that they can use this tool to effectively chart improvements or declines in your condition. He urges doctors to hang a copy of the scale in their exam room and re-evaluate your standing at each appointment.
You might be asking, "If this scale is so great, why aren't other doctors using it?" The answer is simple -- while some research makes for big news, some research goes on quietly and never makes a splash. That's not due to the importance or quality of the research; it's usually due to the ability of the researchers or the organizations behind them to reach the masses. The EIPS is one of those quiet discoveries that kind of fell through the cracks.
OK, now you may be wondering why it helps to know where you stand when you haven't found effective treatments and don't know how you could ever progress to the recovery stage. To fully understand that, you need to know more about Dr. Lerner's work and his theories about ME/CFS. I'll be bringing you more on those topics over the next week.
Learn more or join the conversation!
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- A Simple Explanation of Chronic Fatigue Syndrome
- The Monster List of ME/CFS Symptoms
- Treating Chronic Fatigue Syndrome
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Thank you for your post. I had not heard of EIPS. But I don’t find that the way it’s written is very useful. I have had CFS for over 25 years, and I am unable to work or do much of anything, but I am not bedridden. I am up most of the day, but there is a huge difference between sitting, standing, and walking, and the scale does not differentiate among them, which I find very strange.
I can sit for hours (in a comfy chair with armrests, not a kitchen chair), but certainly not stand or walk for a similar amount of time. Some days I can’t walk more than 30 minutes, and on any day standing for an hour would be difficult.
Since I can’t walk for 1 or 2 hours, I wouldn’t even fit the criteria for a level 2, but I’m certainly out of bed for more than an hour a day, so level 1 would be wrong too. On most days I could probably sit in an armchair for 4 to 6 hours, so that would put me at level 4? It makes no sense.
D.V.,
I definitely understand your concerns about the EIPS. Dr. Lerner doesn’t make a big distinction between sitting, standing or walking because he’s seen that simply being upright vs. laying flat is what makes the difference. If you can be upright for 4-6 hours, at any activity level, you’d be at a level 4.
I hope that clears it up!
I have the same response as D.V.: the scale is not useful.
I am also out of bed all day, but sitting like a lump in an armchair or passively at my computer for hours is not the same a being competent to do anything focused or coherent with my energy-drained body and mind, like a job.
Just because I can walk for 20 minutes (not stand) or sit in a chair for several hours does not mean I am functional enough to perform at any basic level of competence and consistency at a job.
The fatigue of CFS is not just body fatigue – it is also mental fatigue, lacking the energy both for thinking/analysis work and organisational tasks, and for a lot of social interaction, which is very draining at most jobs when one must keep up a professional demeanor and interact in the perky and energetic way employers expect.
None of these complexities are measured in this inadequate and simplistic scale.
I’ve had CFS and fibromyalgia for 23 years, and I’m as sick as I’ve ever been (menopause seemed to make things worse for me).
I also think the EIPS doesn’t make much sense, at least for me. I’m out of bed all day, except for my afternoon nap. But I’m at my computer, at a very comfortable desk chair, usually watching TV at the same time. Being so hypersensitive, I can’t take much of what’s on TV these days, so I DVR my seven soap operas and mostly watch them — good escapist entertainment.
I’m unable to stand up for more than a few seconds without holding onto something. I can go food shopping since I’m holding onto the shopping cart. Walking is easier than standing anyway, but Lyrica has made my balance way off. Cooking is a thing of the past. I live on frozen dinners and soup and crackers and have cereal for breakfast. I have laundry to do right now and I’m able to do light housework. What an exciting life I live. I’m on SS Disability now. Honestly, I don’t miss the rat race and I’m so exhausted, I have little desire to be doing anything anyway! I’m 56 and feel like I’m 86.
I went out to a family party last night and felt so out of it but I went to make my Mom happy and not feel guilty. Most of the time I don’t give in to guilt and just say no and stay home. Now I’m paying the price. My laundry is calling me. Bye Bye!
Oh yeah, the Dr. Lerner scale sounds a lot like the ridiculous “scales” they used on the Social Security and Medicaid disability forms. Even the doctors had difficulty filling them out. THEY DON’T MAKE SENSE!!!!!!
And I’m so sorry, Adrienne, and all my Fibro-Friends, but after so many years of suffering, I’VE HAD ENOUGH AND I CAN’T TAKE IT ANYMORE! THEY BETTER FIND A CURE FOR US SOON!
P.S. I even have a nasty, itchy rash on my arm from my flu shot three days ago. Gee, I really needed that! Gotta go, those dirty clothes are calling me again!
Thank you for your reply Adrienne, and thank you for the wonderful job you have been doing posting very useful and well presented information on CFS and fibromyalgia.
However, if Dr. Lerner believes that the difference between being upright and lying flat is more meaningful than the difference between slumping in an armchair and walking or standing, then I have to conclude he has very little understanding of what it’s like to live with CFS.
The next level up according to him would be working at a 40 hour a week job? The last time I had a regular job was in 1995, working 8 hours a week at a greeting card store where I was allowed to sit in a chair to ring up purchases (I had to choose a job that was as simple as possible because of how hard it was to function at all, even though I have a degree from and Ivy League university), and I had to quit because I couldn’t handle it!
My CFS gets worse year by year, and I am much more disabled now than I was then.
Honestly, if a doctor were to present this test to me, I would flat out refuse to take it. It’s insulting, frankly.
D.V.,
Please understand that Dr. Lerner has himself had chronic fatigue syndrome, and he’s been treating people successfully for 20 years. The categories are intentionally broad, because the move from one category to another represents a highly significant change. They also need to be broad to account for fluctuating levels of energy and ability that many people with ME/CFS have — to get an average over the past 2 weeks (which is how he recommends using the EIPS), it can’t be too narrow or it gets harder to identify your level.
Keep in mind that this is a clinical tool — it’s measuring only the energy level, not the full range of symptoms and not the impact of the condition on your lifestyle. Believe me, in talking to Dr. Lerner is knows exactly how debilitating these symptoms are. The problem he encountered is that doctors don’t have good language for fatigue, or any way to measure it at a given point or over time. However, Dr. Lerner does say that, with proper treatment, as the energy comes up the other symptoms also tend to decline. Here’s more information on Dr. Lerner’s antiviral protocol:
Antiviral Protocol for Chronic Fatigue Syndrome
I agree with the above comments. It’s beyond me how anyone could make the leap between Level 4 – Out of bed sitting, standing, walking 4 – 6 hours per day; and Level 5 – Perform with difficulty a sedentary job 40 hours a week,with daily naps.
Where does just doing some or all activities of daily living fit in? This is what one needs to be able to do before taking on work outside the home; and then perhaps start with a small sedentary part-time job, not 40 hours?
Carol,
Some or all of the activities of daily living would be included in the 4-6 hours of being upright every day. “Sitting, standing, walking” includes things like doing the dishes, folding laundry, going to the grocery store, etc. Remember that each increase represents significant steps, not baby steps. People are generally at one level for a long time, and may also be at a 4.5 instead of a 4. You might go from being able to sit for 4 hours a day and be active for 2, up to sitting for 2 and active for 4, then eventually active for 6. In terms of lifestyle, that’s an enormous jump. You’ve gained a lot of headway. At that point, you may be able to handle a part-time job, depending on your situation. For someone who’s single with no kids and a small apartment, a part-time job would be a lot easier than for someone with 4 kids, 2 dogs and a 5-bedroom house.
I absolutely agree with the other comments. Though I respect Dr Lerner and do think that he understands CFS a lot better than many Drs do, I think that this scale is ludicrous.
I figure that in a very good week, I have about 28 hours that I am functioning. Some weeks that may be split into seven 4 hr days. Other weeks, that may mean crashing completely one day, having one 6 hr day, four 4 1/2 hr days, and one 4 hr day. Another week might be a bad week and I might have far fewer good hours….some weeks I am almost completely bed bound.
And, what I can do during those good hrs varies a lot, too. There is most definitely a big difference between sitting and standing. Actually, I have an easier time exercising than I do standing in one spot, but that has something to do with the orthostatic issues I have (but many CFS patients also have those, so Dr Lerner should be aware of that).
And, as to exercise, some days I can, some days there is no way. According to his chart, it would seem that if I can exercise I should be able to work full time. There is a huge difference from spending some time a few days a week swimming and spending 40 hrs a week working.
There is no where that I would fit in on that chart. I find it much easier to tell my Dr what my weeks are like than to pick a number on that chart.
I guess, according to Dr. Lerner, since my 92 year old great-aunt can sit on the couch watching TV for six hours, she should just as easily be able to go on a six hour hike? Maybe she should get a full time job? The scale doesn’t just make no sense for CFS patients, it makes no sense for anyone.
This has brought back a lot of bad memories of trying to unsuccessfully explain how my condition affects me to doctors and to Soc Sec disability (which I was turned down for, even though I am completely unable to support myself; my parents support me and I’m 45 yrs old).
Dr. Lerner is a very dedicated doctor. His EIP scale measures only one dimension of ME and does not directly measure post-exertional exhaustion. The leap from being upright to work is problematic.
It also does not account for bad days. We all know symptoms fluctuate although the signs generally do not. People who can function within a strict energy envelope may be able to accomplish some things during the day, but that envelope would not include full-time work of any kind.
The emphasis on fatigue also misdirects attention away from the cognitive deficits of this neuroimmune disease. As noted, being able to stand does not correlate with the ability to think. qEEG imaging clearly shows pathogenic slowing of brain waves and patients also show deficits in processing speed and working memory. No matter how smart you are, if you cannot transfer more than a few simple things from working memory to long term memory you will have difficulty learning new things.
All in all the EIP is a good start, but one that needs to be tinkered with a bit more – possibly with several versions.
Yet again we have a ME/CFS measuring scale which thinks that “bedridden, only able to go to bathroom” is the sickest that patients ever get. Sorry, I’ve been at what would be a NEGATIVE score on this scale for many years. So have many others with severe ME/CFS that I know. Count me frustrated to be made invisible yet again.
Most ME/CFS scales have similar problems with not
representing the severe sufferers and not reflecting that people have different levels of disability in different areas. I don’t think this one is significantly worse, per sé, but it’s getting so much press about how wonderful it is which seems odd. I don’t know who they “validated” it against but when I don’t even fit on the scale it doesn’t seem very valid to me!
My favourite ME/CFS scale is the one Jodi Bassett wrote actually, currently at http://www.hfme.org/themeabilityscale.htm – it uses three
complete scales which measure physical ability, cognitive ability, and symptom severity. On that scale I probably score 5% physical, 60% cognitive, and 35% for symptom severity – the numbers are so different that it’s obvious that any scale that merges the three is losing huge amounts of vital information about my disability!
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I know this post is old now, but I still can’t get over how incredibly angry and upset this scale makes me. It is so profoundly offensive that I’m galled that it exists at all. And to see it touted as being from “one of the good guys” is even more of a slap in the face.
Please do not offer me another explanation of why it’s so great. I’m not stupid. I actually have a genius IQ as a matter of fact. I understand the scale perfectly well and that is exactly why I find it unconscionable.
I’m also extremely skeptical of Dr. Lerner’s antiviral treatments and his explanation for the heart’s involvement in post-exertional fatigue. Explanations from doctors who have all the answers that no other doctor seems to have should be considered with extreme caution and skepticism.
Bruce Campbell who created The CFIDS and Fibromyaliga Self-Help class five years ago spoke about our Energy Envelope. It was a scale of ten steps just like the EIPS scale mentioned in the article. The only difference was the Energy Envelope was in percentages and each group represented a 10% recovery or further disability.
I took his online class and bought the book that went with it. I’ve always considered myself at about the 35% level, or 3.5 on the EIPS scale. The descriptions are very similar. And I haven’t moved much either way on the scale since I was diagnosed five years ago.
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