Grades of CFS severity

[me/cfs 27931]

I'd put myself in this bracket. One thing I'm not sure about is "Not usually confined to the house". I'm not bedbound, and still have some mobility albeit very limited, but I'm effectively confined to the house because leaving the house and traveling to doctors appointments etc makes me feel so rough that there's basically no point going out unless it's absolutely necessary.

I'd also put myself solidly in the 60% bracket.

However, when adequately rested, I can often walk a mile. In fact, such exertion can be quite enjoyable on a sunny day.

The difficulty come with the payback/PEM. If I do walk that mile, I'll (nearly always) be mostly bedbound the following day or two, with a sore throat, flu-like symptoms and debilitating brain fog.

My PEM threshold doesn't seem to vary much, assuming I am rested. Of course, if I'm already in a crash, basically any exertion will have repercussions.

 

[Hip]

I keep my heart rate below 90 for most of the time which keeps me away from the aerobic zone

That's an interesting thing to use the heart rate as a measure of the body's rate of energy usage. I have heard other ME/CFS patients use heart rate monitors.

It would be interesting to see if one's heart rate levels over the entire day might be a predictor of when PEM is about to occur. If you connected a heart rate monitor to say a smart phone, and then had an app which calculated how many minutes each day you had an elevated heart rate, that app might be able to provide some predictions and advanced warning of when PEM was going to occur. That might be a useful tool.

Though such an app would probably be thrown off in cases where ME/CFS patients also have POTS, because in POTS your heart rate increases significantly just on standing up, irrespective of your energy expenditure rate.

 

[Basilico]

The PEM is taken into account in the sense that it is one of the factors sets the limits of activity of an ME/CFS patient during each day. If for example your PEM is one of the factors that prevents you leaving the house much, because walking too much triggers PEM which then puts you up in bed for several days after, that makes you a semi-housebound patient, because you need avoid going out for long periods because of the PEM repercussions.

Some patients need to use a wheelchair in order to minimize the amount of physical exertion that they do, and if they did not use a wheelchair, they would be in a state of PEM all the time, and thereby bedbound for days on end.

However, such patients in bed due to PEM would not be as bad as patients who are so ill that they remain bedbound nearly all the time anyway, even with without doing any physical or mental exertion (these are the severe patients).

Has your husband tried any of the supplements that members of this forum have found help prevent, alleviate or curtail PEM? See List of Supplements Which Reduce PEM (Post-Exertional Malaise) Crashes.

He has taken most of the items on that list at various points, but only the CoQ10 and the BCAA specifically for PEM (both did not help). He has taken D-Ribose to improve his exhaustion/fatigue (it did nothing for him). At this point, the only things that seems to be helping is taking liposomal glutathione right at the beginning. It might be worth trying multiple things on that list simultaneously, since many he took before he started getting PEM. Thank you for that link.

He also gets something very similar to PEM but without doing anything physical to cause it. He calls it a 'flare up' for lack of a better term, and can get it even when he's not done anything even remotely physical. I'm assuming this isn't PEM (since there was no exertion to cause it). I wonder if this is possibly also due to lactic acid or is from a different source. (So tired that he has to lie down, dead arms, etc...)

I have a question about one item on the list, citrulline. I was under the impression that it wouldn't be a good idea to take citrulline, since it becomes arginine (and then on to form nitric oxide). Obviously, NO in the right amounts is critical, but since it is hypothesized that people with CFS have an unregulated NO productions that goes on to form reactive nitrogen species, I've seen recommendations to avoid supplementing with Argenine to avoid increasing NO. Cheney also mentions limiting NO production. So in my mind, Citrulline would seem to be a bad idea. However, if some CFS people are taking it and improving, then it must be doing something necessary. What's your take on this?

 

[Hip]

He also gets something very similar to PEM but without doing anything physical to cause it.

You can also PEM from purely mental exertion, so perhaps that might be what your husband is experiencing? Myself, I get PEM from social activity, and a 2 or 3 hours chatting and laughing with friends in the living room will take its PEM toll the next day.

I have a question about one item on the list, citrulline. I was under the impression that it wouldn't be a good idea to take citrulline, since it becomes arginine (and then on to form nitric oxide).

I have never had any problems with citrulline or arginine supplements myself, and I have seen lots of patients take them on this forum. For some, the arginine may cause an outbreak of herpes simplex cold sores around the lips (this sometimes happens to me), but that's the only side effect I remember reading about.

I find such arginine supplements have anti-anxiety effects, and anxiety is one of the extra symptoms that I have alongside the ME/CFS.

I find NO increasing supplements mildly helpful. I sometimes apply 2 grams of potassium nitrate transdermally in order to increase NO (I avoid oral potassium nitrate, because of the cancer concern with oral nitrates and nitrites).

 

[arewenearlythereyet]

That's an interesting thing to use the heart rate as a measure of the body's rate of energy usage. I have heard other ME/CFS patients use heart rate monitors.

It would be interesting to see if one's heart rate levels over the entire day might be a predictor of when PEM is about to occur. If you connected a heart rate monitor to say a smart phone, and then had an app which calculated how many minutes each day you had an elevated heart rate, that app might be able to provide some predictions and advanced warning of when PEM was going to occur. That might be a useful tool.

Though such an app would probably be thrown off in cases where ME/CFS patients also have POTS, because in POTS your heart rate increases significantly just on standing up, irrespective of your energy expenditure rate.

Yes if I do any cardio exercise (as defined by heart rate zones) I get PEM. Heart rate monitoring for me is an accurate predictor of PEM from physical activity (and other forms of stress, such as redundancy consultation, job interviews etc). I use it for pacing and sit down if my heart rate goes too high. This limits how far I can walk at any one time, how fast I walk up stairs etc etc.

 

[kikala]

I'm curious about how others experience the difference between PEM and a crash. I find that if I limit myself (basically resting most of the day), my PEM isn't too bad, though I do get significantly worse with any upright activity. My PEM generally goes away after a few hours of rest or a long night's sleep.

But then I have crashes that last anywhere from a few weeks (rare) to 3 -4 months. The level of health I feel is dramatically different when I'm in a crash. When I'm not in a crash, I still do all the self-care (in bed 10- 12 hours a night, and two half-hour naps before each meal) and I can't do significantly more activity, but I feel sooooooo much better. I get exhausted after a few hours but I can rest comfortably and actually feel somewhat rested after sleep.

When I'm in a crash, my activity doesn't look all that different, but I just feel so sick all the time. I lie in bed too exhausted to rest -- lie in the fetal position with no stimulation but somehow feel like doing so is beyond my energy capacity. Unfortunately after being relatively stable for 20+ years, the last 3 years have been much harder, with more than half of my time spent in crashes. Sigh. Would love to hear others' experiences.

 

[arewenearlythereyet]

I'm curious about how others experience the difference between PEM and a crash. I find that if I limit myself (basically resting most of the day), my PEM isn't too bad, though I do get significantly worse with any upright activity. My PEM generally goes away after a few hours of rest or a long night's sleep.

But then I have crashes that last anywhere from a few weeks (rare) to 3 -4 months. The level of health I feel is dramatically different when I'm in a crash. When I'm not in a crash, I still do all the self-care (in bed 10- 12 hours a night, and two half-hour naps before each meal) and I can't do significantly more activity, but I feel sooooooo much better. I get exhausted after a few hours but I can rest comfortably and actually feel somewhat rested after sleep.

When I'm in a crash, my activity doesn't look all that different, but I just feel so sick all the time. I lie in bed too exhausted to rest -- lie in the fetal position with no stimulation but somehow feel like doing so is beyond my energy capacity. Unfortunately after being relatively stable for 20+ years, the last 3 years have been much harder, with more than half of my time spent in crashes. Sigh. Would love to hear others' experiences.

My PEM takes the form of crushing exhaustion, extreme joint and muscle pain, a massive drop in my cognitive abilities (no concentration, can't do simple arithmetic, can't hold a 121 conversation, get sensory overload from having the tV on in the background, phones ringing, two people talking at the same time or just having a conversation with each other, bright lights etc.), general confusion, loss of short term memory, nausea, headache, and generally no energy to do anything but sit or lie down. Emotionally it's all over the place (irritable is putting it mildly) Also noticed my appetite disappears.

Normally lasts at least 24 hours sometimes 3 days, but since taking the d ribose it seems to be mostly 24 hrs. I call my PEM episodes, crashes and this is distinct from low days (e.g. When I have a virus) where I can have as low as 20% of the energy of a "normal" crappy day but without all the other symptoms. I crash around every 3-4 weeks even when I'm pacing strictly. I'm not convinced I can be that perfect in pacing to avoid them but at least they are relatively short lived compared to what they were before I started to pace.

 

[Hip]

I'm curious about how others experience the difference between PEM and a crash.
...
My PEM generally goes away after a few hours of rest

I think people use the terms PEM and crash fairly synonymously.

I am not sure if what you are describing as "PEM" is actually PEM, because PEM does not usually go away after a few hours rest; it usually takes days or weeks of rest for PEM to go away.

The CCC says that that recovery from PEM takes "usually 24 hours or longer".

 

[Sandman00747]

I'm curious about how others experience the difference between PEM and a crash. I find that if I limit myself (basically resting most of the day), my PEM isn't too bad, though I do get significantly worse with any upright activity. My PEM generally goes away after a few hours of rest or a long night's sleep.

But then I have crashes that last anywhere from a few weeks (rare) to 3 -4 months. The level of health I feel is dramatically different when I'm in a crash. When I'm not in a crash, I still do all the self-care (in bed 10- 12 hours a night, and two half-hour naps before each meal) and I can't do significantly more activity, but I feel sooooooo much better. I get exhausted after a few hours but I can rest comfortably and actually feel somewhat rested after sleep.

When I'm in a crash, my activity doesn't look all that different, but I just feel so sick all the time. I lie in bed too exhausted to rest -- lie in the fetal position with no stimulation but somehow feel like doing so is beyond my energy capacity. Unfortunately after being relatively stable for 20+ years, the last 3 years have been much harder, with more than half of my time spent in crashes. Sigh. Would love to hear others' experiences.

Hi kikala, your condition is almost exactly like mine! I had 18+ stable years and then fell into a horrible relapse that was almost as bad as the onset. But I guess I still have a blessing or two to count because when I have crashes they usually only last from several days to a week. And I can usually shake the PEM within a few days. But the constantly sick feeling I have in a crash has become very hard on me mentally. I can't cope quite as well as when I was younger.

 

[kikala]

Thanks Sandman. I'm feeling so discouraged right now, as I feel like I was managing OK for many years-- lots of grief and sadness, but also able to appreciate lots of little things. Whenever I think I'm coping well, I realize that it's just that I"m feeling better physically! There's a line that gets crossed, where being sick pervades every moment -- and when I'm under that line it's very very difficult to feel at peace -- it's like my body is screaming that it's in crisis.

 

[Hip]

Unfortunately after being relatively stable for 20+ years, the last 3 years have been much harder, with more than half of my time spent in crashes.

One of the things that seemed to halt my downward spiral into worse and worse ME/CFS was selenium, 400 mcg daily on an empty stomach. Selenium has antiviral properties for enteroviruses. See this post.

 

[Leopardtail]

Most of these scales underplay the impact of working with symptoms. I am a 20-30% on the MEA scale but find the scales of very little use to convey what I need to continue working. I also can't stand for longer than 10 minutes, but can walk for 20 min. I can't lift or carry much. I have to carefully plan all my customer visits around how far I can drive without a rest break and I certainly would struggle to manage without 7 hrs sleep if early morning meetings were required. I think the scale doesn't reflect adaptations via pacing. I prefer specifics like.

Can carry weights of 10kg yes no?
Can stand for longer than 10 minutes
Number of rest breaks required during the day
Earliest start time

These are all relevant specific things an employer would need to know to make reasonable adaptations at work as a starting point for the mild moderate group. The scales appear to have been designed around the more severe being home bound and requiring care rather than explain limitations for working for the moderate to mild group.

I have struggled with my employer to establish reasonable adaptations at work and have received a lot of discrimination at work as a result. It would have been helpful to have had some scales that would have helped define the scale of my disability better.

So do I and started producing my own rating scale for that reason.

 

[Leopardtail]

The PEM is taken into account in the sense that it is one of the factors sets the limits of activity of an ME/CFS patient during each day. If for example your PEM is one of the factors that prevents you leaving the house much, because walking too much triggers PEM which then puts you up in bed for several days after, that makes you a semi-housebound patient, because you need avoid going out for long periods because of the PEM repercussions.

Some patients need to use a wheelchair in order to minimize the amount of physical exertion that they do, and if they did not use a wheelchair, they would be in a state of PEM all the time, and thereby bedbound for days on end.

However, such patients in bed due to PEM would not be as bad as patients who are so ill that they remain bedbound nearly all the time anyway, even with without doing any physical or mental exertion (these are the severe patients).

Has your husband tried any of the supplements that members of this forum have found help prevent, alleviate or curtail PEM? See List of Supplements Which Reduce PEM (Post-Exertional Malaise) Crashes.





I also have ADHD, which appeared after viral meningitis. When I have not slept sufficiently, it is definitely worse, and I start to have trouble reading.

Technically though ADD/ADHD is not a symptom of ME/CFS, and is not part of the ME/CFS brain fog. I also have the ME/CFS brain fog in addition to the ADHD, and together they make my cognitive problems worse.

ADD/ADHD is more about problems with inputing information into your brain (eg, inputting the meaning from written text); brain fog is more to do with problems with processing that information once it is in the brain.

It should neither be best case, nor worst case. It should be the level of function that can be expected most of the time, on most days - without creating OEM. If highly variable an average should be taken.

 

[Sidney]

Yeah that percentage scale is not too bad.
There is nothing that states the 'need to constantly lie down', 'has to fight to stand up', 'has anxiety about standing up', etc
I would rate myself as 50% on that scale

Very interesting criterion: except that for me, all 3 states fluctuate ( also depending on whether with PEM, and whether medicated).

 

[MastBCrazy]

It would be interesting to see if one's heart rate levels over the entire day might be a predictor of when PEM is about to occur.

I do this. I have tracked my activity daily (using standard walking distances) and as I get closer to PEM, my heart rate increases significantly for the same activity.
It is great to pace exercise, as my nature would be to move faster than my body can truly tolerate. Also VERY helpful in the shower, as I can see when I should sit. My most interesting finding is being breathless at low heart rates - often when close to, or into, PEM.

It would be interesting to see if one's heart rate levels over the entire day might be a predictor of when PEM is about to occur. If you connected a heart rate monitor to say a smart phone, and then had an app which calculated how many minutes each day you had an elevated heart rate, that app might be able to provide some predictions and advanced warning of when PEM was going to occur. That might be a useful tool.

My Polar A360 provides a 'calorie' count for the activity. A 150 calorie activity on a stable day can become >350 calories for the same activity over similar time if I am close to PEM onset. Wired-tired (everything-is-a-threat) is my official signal that I'm officially entering PEM. My monitor also gives me a running total on the day. So, I know I'm close if I'm close to the 100% mark and completing activity 1 of 5 for the day. I find it helpful to know where I'm at in the day, and defer more as needed.

But back to topic:

• having 4-5 groups ranking severity helps knowing where you are, and what you risk if you have a step-down from a crash. I dislike most of the scales as it always feels like they fail to capture the complexity.
• I agree that the classification is by looking overall and not when in PEM, or simply going from one PEM to another (been there, done that - no tee shirt). Namely, 'baseline bad'.
• I also suspect that repeated PEM is not good, and could possibly reward with a step in severity. I do not deny the possibility for 'unearned' changes too! I just try to fight progression where and how I can.
• I also think if the onset of PEM is THAT variable, there is another trigger that is being ignored. Physical activity, mental activity, and mould exposure are three examples of triggers for me.

 

[Leopardtail]

Here are my comments.

The severity scale is not perfect. There are many shades of mild, moderate, severe and very severe which do not fit in the nicely packaged descriptions. What I have trouble reconciling with, is that sometimes the severity can be linked to the availability of the support system. "Cannot prepare meals" is not a choice for those who are in the marginal zone of moderate severe with no one around. Sometimes one cuts corners in that regards, like instant meals, or peanut butter sandwiches. Patients are masters at juggling their energy spending account. If they are cooking, then they are not bathing themselves that day. Or if they have someone to cook, clean and drive, it means they are able to step out of their home for one precious hour for a change of scenery. Does that mean they are less sick than a housebound patient who has no help and must clean and cook?

I hear that Katie,

I used to cook stew one day, then just warm it up in the days after and not shower the day I did that. It got so bad sometimes I just brushed my teeth, or showered some days.

I have been of the opinion for some time we need a proper scale with multiple metrics and way to calcualte the overall score simply.

Nothing too complex, but something that produces a clearer idea E.g

1. one for ability to work,
   
2. one for ability to socialise (how often and how many people),
   
3. one for housework,
   
4. one for personal care,
   
5. sensory (in)tolerance

We ran a thread a couple of years ago where we compared the various scales that might be used, some were more effective at distinguishing function from a can work and live point of view (mild ME) some were much more effective when people required care or hospitalisation (very severe), most single metric scale were very difficult to interpret one's level one.

Most of these scales underplay the impact of working with symptoms. I am a 20-30% on the MEA scale but find the scales of very little use to convey what I need to continue working. The scales appear to have been designed around the more severe being home bound and requiring care rather than explain limitations for working for the moderate to mild group.

I have struggled with my employer to establish reasonable adaptations at work and have received a lot of discrimination at work as a result. It would have been helpful to have had some scales that would have helped define the scale of my disability better.

I agree that we need much smarter scales as per my comments above. Speaking as somebody who has needed care, I find them very poor at the severe end too. I was in the largely bedbound group for weeks at a time and just had to stop eating, because I did not have care for days at a time - I was living on lumps of cheese until I could finally manage to get real food.
As I discuss above we are using one metric (measure on the scale) to cover too many different things.
Obvious items missing are:
Requires help with houshold talks and reminder to live safely at home
Requires help with food, reminders and personal care (e.g. can't wash self).
Reqiures care home type facilities
Requires constant round the clock care
Requires Hospitalisation
Requires Intensive care in Hospital.

I'd also put myself solidly in the 60% bracket.

The difficulty come with the payback/PEM. If I do walk that mile, I'll (nearly always) be mostly bedbound the following day or two, with a sore throat, flu-like symptoms and debilitating brain fog.

My PEM threshold doesn't seem to vary much, assuming I am rested. Of course, if I'm already in a crash, basically any exertion will have repercussions.

With any rating form (including for social security) the usual assumption you need to make when aswering questions about what you can do are:

1. answer only what you can do withour worsening your health.
2. answer only what you would be able to do at least 60% of the day at least 60% of the day for the period of time under consideration whether that be a whole year, a quarter, or whatever.

Even semi-healthy people (i.e. not athletes) can do something that is superhuman for them, but it would be unrealisatic to say they can do that for any rating system.

That's an interesting thing to use the heart rate as a measure of the body's rate of energy usage. I have heard other ME/CFS patients use heart rate monitors.

It would be interesting to see if one's heart rate levels over the entire day might be a predictor of when PEM is about to occur. If you connected a heart rate monitor to say a smart phone, and then had an app which calculated how many minutes each day you had an elevated heart rate, that app might be able to provide some predictions and advanced warning of when PEM was going to occur. That might be a useful tool.

Though such an app would probably be thrown off in cases where ME/CFS patients also have POTS, because in POTS your heart rate increases significantly just on standing up, irrespective of your energy expenditure rate.

The idea of heart rate to monitor ones personal crash point is very interesting. I know when I was very ill, I had absysmal blood volume and got POTS very quickly, when semi-ill just go Orthostatic intolerance without the POTS when well no symptoms at all. There was a corresponging scale of Polyuria and Polydispia too.