The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

[CreativeB]

@Learner1, I like your tracking markers. It's clear you've given it a lot of thought and I think this is helpful.

I think, as with everything else here, we all have to find what we can relate to, what works for us

 

[medfeb]

@Learner1 - I also like your tracking markers. Do you have a tool that you use to track these? Are there any in the list that are especially useful or useful at different stages of severity?

 

[Learner1]

I haven't formalized it, but it would be easy to put them in a spreadsheet.

Yes, there are likely groupings. For example, now that I can sleep through the night, stand in a grocery line, do cognitive tasks, and sit through a meal, I don't track them anymore.

These days, I'm measuring by my ability to work, exercise, do housework, stand, and socialize, all of which I still have significant challenges with, along with the number of hours of treatment or self-care per week and amount of PEM I get, and naps needed.

 

[CreativeB]

Thanks again @Learner1. This is really useful and I can see how to adapt this to my own situation. I think being able to review and hopefully identify changes will be beneficial

 

[Learner1]

Thanks - good luck with your efforts! I find being able to report these things to my doctors helps me get better care, which helps me make further progress, and helps turn things around if things worsen by making adjustments to my treatment plan.

 

[alex3619]

Australia uses a modified Karnofsky scale - https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow129188.pdf

In this I was thinking I was at 60 on the modified scale, but then I realised I might meet the criteria for 40, rising to 60 late at night. I am asleep over half of all daytime. When not bedbound I am chairbound for over 95% of the time, moving as little as possible so I have the energy to get food, make tea etc. when I need to.

Usually I just use the ICC, its the simplest.

 

[Hip]

Usually I just use the ICC, its the simplest.

Is there a severity scale associated with the International Consensus Criteria for ME/CFS?

 

[alex3619]

Is there a severity scale associated with the International Consensus Criteria for ME/CFS?

See your first post.

 

[Hip]

See your first post.

D'oh! Thanks!

(The first post I actually wrote some time ago, so I forget the details).

Yes, the ICC is a really nice and succinct description of the levels of severity.

 

[alex3619]

The first post I actually wrote some time ago, so I forget the details)

Every now and again I read a post written by someone that I fully agree with, and am surprised. Then I check the author ... me, but I had no memory of ever writing it.

 

[Blazer95]

This is very interesting, I Always thought my Symptoms are severe. But compared to this scale i am still 50 and Sometimes even a 60. Wow.

And i almost never Leave the House and are almost completely "seatbound"

Not being light sensetive and being able to do my own laundry makes a big Difference i guess..

 

[Nord Wolf]

Thanks Hip. However, I’ve always found these scales to be very difficult to fit myself into. The reason being that they are geared to ME/CFS, and only ME/CFS, but most of us with ME/CFS have multiple comorbidities that drastically change the scales. How can we possibly fit ourselves into an ME/CFS scale when so many comorbidities throw a slew of symptoms and severe life interferences into the picture? And, many people with ME/CFS have it as a comorbidity rather than the core disease. Mine happens to be that way.

So, interesting, and well laid-out, but still very difficult for many of us to actually relate to in terms of exact levels.

 

[hapl808]

I find these scales useless because people often cut across scales. Like for years I was between mild-moderate, because the way my life was set up allowed for constant crashes, and a lot of my symptoms were more constant headaches, GI discomfort, nausea, migraines, etc. Debilitating, but also mild-moderate I guess.

The real problem with the scales is it's incredibly minimizing, and unless people understand the vocabulary, creates huge misunderstandings. I've seen people say they were severe, but have a full time job. Others say they are moderate and are housebound. Then cognitive issues are somewhat of a separate issue that's not really addressed.

I wish the scales used unusual or made-up words so there wasn't a ripe ground for misunderstanding. If you tell someone outside of this small world that you have 'moderate ME/CFS', that does NOT sound like someone completely incapable of holding down a job. Then you just sound like a whiner that you 'refuse' to work with only moderate symptoms.

It could've been Stage I through Stave IV like cancer. Or some other terminology. This language that we currently use is completely unhelpful and I think actively damaging to the community and cause.

 

[Viala]

Mild would be good for someone working full time, having minor to moderate difficulties but still being able to participate in after work activities.

Moderate for part time work only and still being able to do some after work activities a couple of times a week, but needing to rest more, the disease is starting to seriously interfere with daily life which is clearly noticeable. This is where we should get help, stop working and start pacing.

Severe should be for anyone who needs to choose between work and any other activities. If someone goes back home and barely makes it to cook meals and have zero after work activities, that is already severe. Living just for work and then suffering instead of resting and enjoying life, is not living. We need to fulfill our basic needs to remain psychologically and emotionally healthy, if a disease doesn't allow it, such stage shouldn't be named as mild or moderate.

Then next stages of being severe.

 

[hapl808]

Mild would be good for someone working full time, having minor to moderate difficulties but still being able to participate in after work activities.

Moderate for part time work only and still being able to do some after work activities a couple of times a week, but needing to rest more, the disease is starting to seriously interfere with daily life which is clearly noticeable. This is where we should get help, stop working and start pacing.

Severe should be for anyone who needs to choose between work and any other activities. If someone goes back home and barely makes it to cook meals and have zero after work activities, that is already severe. Living just for work and then suffering instead of resting and enjoying life, is not living. We need to fulfill our basic needs to remain psychologically and emotionally healthy, if a disease doesn't allow it, such stage shouldn't be named as mild or moderate.

Exactly. I'm still not sure I 'believe' in ME/CFS - meaning that I'm not sure if it's a bucket of many illnesses or one unified field theory of disease. Since we vary so much in symptoms, that makes it even harder.

But that said, those breakdowns are what a normal person would imagine. That's how I viewed my illness - after getting sick after a SE Asia trip, I constantly had to choose between careers, jobs, social activities, travel, etc. Every full day led to a crash, so I had to do jobs that weren't daily work. That felt pretty life altering and severe, although I learned to accept it.

After that, when I declined into 'cannot leave the house without crashing for weeks', that was a whole new level of misery. And worse when it became 'cannot talk on the phone too long before crashing'. But moving the previously severe state to 'mild' to make room for worse levels seems silly.

 

[Rufous McKinney]

It could've been Stage I through Stave IV like cancer.

I agree with your main points.....Stages suggests the illness develops along a trajectory. And maybe it does. Another aspect of this nobody is studying. Progressing thru stages. What is driving those stages?

I think we've done a generally poor job identifying milder stages of this. Mild is a category extensively ignored by the researchers.

Nobody has ever asked me, what happened? How was it I could function somewhat, in this mild state, and that state transformed over two months into a much worse condition. Why is there no interest in what is triggering such shifts in our condition?

I existed for decades in some state defined as mild. I got "much worse" in July 2018; yet I'd been experiencing ongoing deterioration since 1998 when menopause intensified and it took my Sleep.

Sleep became un refreshing; this created intense anxiety that made my very difficult work, that much more stressful. I recall when the vision issues made driving at night, impossible. You can't safely get home from a meeting. This creates more STRESS.

So activities which might trigger Me Not Sleeping, became all the activities I needed to avoid. Those included fun activities. Fun leaves your life.

 

[Nord Wolf]

Exactly. I'm still not sure I 'believe' in ME/CFS - meaning that I'm not sure if it's a bucket of many illnesses or one unified field theory of disease. Since we vary so much in symptoms, that makes it even harder.

Agreed. I was diagnosed after testing with Dysautonomia, a verified condition through neurology medical testing. I also have verified and tested for Hyperadrenergic Postural Orthostatic Tachycardia. And then I also have Encephalomyelitis (swelling of the brain and spinal cord after exertion) that was tested with imaging. I was “diagnosed” with ME/CFS as well, but even though I fit all criteria, there is still no agreed upon medical test for it. In my mind the ME/CFS condition for me is just an aspect of the Dysautonomia and other conditions I have. ME/CFS is the only condition I’ve been diagnosed with that had no test for.
But then you have people who test negative for everything and fit the criteria for ME/CFS, so who knows…

But moving the previously severe state to 'mild' to make room for worse levels seems silly.

However, to try categorizing people with ME/CFS or any other neuroimmune disease in such narrow ranged charts is just not practically possible in my opinion. Depending upon the week and time of year I would fit “moderate” and “severe” equally.

 

[Mimicry]

Like so many others, I feel like these scales don't apply to me at all, mostly because my muscles work just fine until I hit my energy limit. I can do 20 push-ups a day without PEM but in total, I can only be active for less than two hours a day if I want to avoid PEM. So my endurance is very limited but I'm pretty strong, considering that I'm currently housebound.

When I was mild, I was able to exercise (jog and go to gym) a couple days a week (and had to rest for several days afterwards due to awful PEM), but part-time cleaning work for 13 hours a week was way too much because there weren't enough rest days in between, and both my engineering studies and my social life suffered a lot during that time. I was able to do it for 8 months but in the end I felt absolutely terrible and had to quit. Afterwards I started doing cleaning jobs maybe 4-6 hours a month and was able to recover from that better.

Now I'm moderate and pretty much housebound. Can't work and had to quit my studies too. Outside of PEM I can walk just fine for about 30 minutes, then I get lightheaded and weak and have to lie down (and get PEM the next day, obviously). I've considered getting a wheelchair but because of the pain in my hands and arms I don't want to use a manual one because it would just give me PEM, and I would need to buy an electric wheelchair. The health center here only lends you manual wheelchairs.

 

[sunshine44]

I agree with your main points.....Stages suggests the illness develops along a trajectory. And maybe it does. Another aspect of this nobody is studying. Progressing thru stages. What is driving those stages?

I think we've done a generally poor job identifying milder stages of this. Mild is a category extensively ignored by the researchers.

Nobody has ever asked me, what happened? How was it I could function somewhat, in this mild state, and that state transformed over two months into a much worse condition. Why is there no interest in what is triggering such shifts in our condition?

I existed for decades in some state defined as mild. I got "much worse" in July 2018; yet I'd been experiencing ongoing deterioration since 1998 when menopause intensified and it took my Sleep.

Sleep became un refreshing; this created intense anxiety that made my very difficult work, that much more stressful. I recall when the vision issues made driving at night, impossible. You can't safely get home from a meeting. This creates more STRESS.

So activities which might trigger Me Not Sleeping, became all the activities I needed to avoid. Those included fun activities. Fun leaves your life.

Thank you rufous. I sometimes go back to my year of collapse over and over and cannot comprehend the lack of interest that I was a walking, functioning mother of 2 and within months, no longer was and couldn’t even bathe or feed myself. I mean…. Why so little interest in this?! This is so huge. So many of us fell quick and hard after years of symptoms that were misdiagnosed. It’s just so difficult to wrap my brain around.

Even the awful doctor I saw a few weeks ago, with zero tests, said I could do things I cannot. He had such little interest in what happened! He obviously saw I have zero reflexes under knee. Zero spinal MRIs. Someone explain this. Because beyond insanity, I cannot.