Mild, Moderate or Severe M.E.?

[JoanDublin]

Hi again,

I had a but of a Eureka moment tonight and it wasn't very pleasant so I thought I would check out with your guys what you think.

If anyone had asked me before tonight what level ME my young lad had I would have said 'moderate' but now I'm actually beginning to wonder if I'm in denial and he has a more severe form of the illness.

I know you can't 'diagnose' him but just, based on your experiences, what do you think?

- He hasnt been able to leave the house for a number of months
- He doesnt see any friends at all
- He rarely leaves his bedroom except most days to come down for dinner, then he goes back up. Some days he just can't make it down so he has his dinner in his room.
- He sleeps all day mostly til about 5pm - he doesnt sleep at all during the night
- He has no energy to do anything at all except come down the stairs maybe once or twice a day
- He has joint and muscle pains now all the time
- He can't bear light - his room is like a cave and he asked me could I get darker curtains for it
- The mere thought of having to leave the house for a doctor or hospital appointment sends him into a spin. If the appointment is in the morning he tries not to fall asleep because he knows he struggles really hard to wake up again. Late evening appointments are a bit better - but not much
- He hasnt been able to attend school at all since January of this year and even then it was only for a few half days. He has effectively missed two whole years of school

I am so worried that he is developing a severe level of this disease but I just don't know. Last week I had made an appointment with his GP to get her to check balance issues he has been having and he couldnt make the appointment even though it was at 5pm in the evening. I would have had to drag him out of the bed and bring him down - in tears....

Any insight would be appreciated

Thanks

 

[AndyPandy]

Hi @JoanDublin

Have you had a look at the Bell Scale? It is mentioned on PR or you might like to google. It is one way of categorising levels of disability/function and illness severity for people with ME/CFS.

The scale doesn't seem to fit everyone perfectly, but it is a starting point.

Best of luck with your young lad. I admire you greatly for your efforts on his behalf.

 

[*GG*]

So sorry you have to be going thru such a challenge with your son. To me I would say at this point it is severe, hopefuly it will subside and become more moderate

Kind of reminds me of when I had my crash and was out of work for nearly 3 months. I think you should find some good meds (I take anti-depressants (Remeron), and I am not usually majorly depressed) so he can get to bed earlier and perhaps get more rejuventating sleep! It's not easy, but would probably be the most useful thing to tackle at this time.

GG

 

[TigerLilea]

I would definitely consider those symptoms to be "severe". I consider myself to be "moderate" and I am not bedridden, can do things like grocery shop, housework, light exercise, yard work in small spurts, etc. I do crash but that is because I don't pace myself.

 

[TigerLilea]

- He sleeps all day mostly til about 5pm - he doesnt sleep at all during the night
- He can't bear light - his room is like a cave and he asked me could I get darker curtains for it

Has your son tried taking melatonin for his sleep? If he is in a dark room all day his sleep cycles will be all screwed up. The human body needs light during the day and dark at night otherwise the circadian rhythm goes out of whack, and then so does sleep.

 

[minkeygirl]

I do not go out except for doctors appointments and once in a while for dinner but I don't consider myself severe because I can function inside my home. I have no help so do all the cooking, cleaning and bill paying myself.

When I'm not doing something I am horizontal though. I'd consider myself moderate so I think it's all perception.

@TigerLilea I just saw you are from Vancouver. I was there years ago and loved it. My dream was to go up the coast to Bella Coola.

 

[JoanDublin]

Hi @JoanDublin

Have you had a look at the Bell Scale? It is mentioned on PR or you might like to google. It is one way of categorising levels of disability/function and illness severity for people with ME/CFS.

The scale doesn't seem to fit everyone perfectly, but it is a starting point.

Best of luck with your young lad. I admire you greatly for your efforts on his behalf.

I looked that up and I'd say he is somewhere between 20 and 30

 

[JoanDublin]

Has your son tried taking melatonin for his sleep? If he is in a dark room all day his sleep cycles will be all screwed up. The human body needs light during the day and dark at night otherwise the circadian rhythm goes out of whack, and then so does sleep.

He was put on Melatonin just recently and had a bad reaction to it - severe stomach pains which had him crying. He has severe bowel problems with his ME and is well used to abdominal discomfort and he says it was way beyond that level of pain. His GP took him off the tablets and the pain resolved within about 36 hours

 

[alex3619]

Being mostly housebound is indeed moderate under the CCC, but severe under the ICC. What is important though is to realize that mild means a loss of 50% of functional capacity. Some would think that severe, and for good reason.

 

[WillowJ]

hi, there are a number of different ranking systems for mild/moderate/severe/(very severe).

In a four-tier system, I rank as severe, but in a 3-tier system, I may rank as moderate (I can eat and toilet by myself, walk through my house [even if I sometimes grab furniture for balance or fall against the wall], and read and use a computer at least for a while), though on some 3-tier systems I rank as severe (these lump very severe together with severe, or ignore very severe).

If I had no medicine, I would likely be very severe, but thankfully I have anti-inflammatories, migraine medicine, potassium supplements, etc.

ICC Primer:

4. Symptom severity & impact:
Mild: meet criteria and have a significant reduction in activity level;
Moderate: approximately 50% reduction in pre-illness activity level;
Severe: mostly housebound;
Very severe: mostly bedbound and require assistance with daily functions.
Those who are very severely affected are too ill to attend regular medical appointments

CCC:

(Mild–occurring at rest,
moderate–symptoms that occur at rest become severe with effort, unable to work, and
severe–often housebound or bedbound.

from Appendix 3, after a list of symptoms (this is actually an explanation of how to rate the individual symptom severities)

see more scales at:
http://www.pugilator.com/awareness/review-of-6-mecfs-ability-and-severity-scales/

For some reason, it's pretty normal for it to be easier for us to function at night. I think part of it is that the environment is quieter (e.g. less traffic) and cooler, but it could be something else.

It's also normal for morning appointments to be much harder. Please do everything you can to schedule later in the day whenever possible (I know this is not always possible, as doctors' schedules are difficult).

I have cancelled some of my own appointments due to unable to bear the trip. Please do not drag your son to the doctor in tears unless it's some kind of emergency. Reschedule the appointment, schedule by phone/video chat or home visit if possible, etc.

You may wish to join the 25% ME Group for support and advice. You can also contact SpeakUpAboutME to get in touch with other mothers and young people. I think there's also a facebook group for parents.

 

[JoanDublin]

I would definitely consider those symptoms to be "severe". I consider myself to be "moderate" and I am not bedridden, can do things like grocery shop, housework, light exercise, yard work in small spurts, etc. I do crash but that is because I don't pace myself.

He couldnt do anything like that at all. I try and get him to come out grocery shopping with me - just for the company. He's just not able for it. The most he can do is put the recycle rubbish out in the bin right outside the back door He keeps apologising for not helping out more so I don't think its 'teenage' laziness

 

[JoanDublin]

@WillowJ

He is definitely better in the night time. He can't function at all during the day but can watch a film on his iPad or play a game on his Play Station usually late at night so long as his temperature doesnt get too hot - which happens quite a lot.


Thanks for the other links. I will check them out

 

[TigerLilea]

For some reason, it's pretty normal for it to be easier for us to function at night. I think part of it is that the environment is quieter (e.g. less traffic) and cooler, but it could be something else.

It's also normal for morning appointments to be much harder. Please do everything you can to schedule later in the day whenever possible (I know this is not always possible, as doctors' schedules are difficult).

I'm the total opposite. Unless it is a smoking hot summer day, I find that as the day progresses, I find it harder to function. And my best times are always in the morning about an hour after I get up. By noon I'm feeling the exhaustion, by dinner time I really start to slow down and by 8:00 p.m. I'm ready to crash on the couch for the evening and have trouble staying awake while watching TV.

 

[WillowJ]

I'm the total opposite. Unless it is a smoking hot summer day, I find that as the day progresses, I find it harder to function. And my best times are always in the morning about an hour after I get up. By noon I'm feeling the exhaustion, by dinner time I really start to slow down and by 8:00 p.m. I'm ready to crash on the couch for the evening and have trouble staying awake while watching TV.

I know another person like that, too.

I think there are a number of schedules that can be considered "normal" for us.

 

[SDSue]

@JoanDublin I'm sorry your son is so sick.

I find that denial runs deep for me. Initially, when I was mostly bed bound, crawling to the restroom and existing on only peanut butter, I considered myself "moderate" because I just couldn't face the whole thing. With so many worse off than I, it felt somehow wrong to say I might be "severe".

But the truth is, when we're in bed for months, we're severe by anyone's scale. And it's tragic.

I wish you and your son well.

 

[Gingergrrl]

@WillowJ Do you have a link to the Bell Scale? I googled it and found a lot of descriptive info but couldn't find the actual scale! I am curious to see where I fit on it. I would consider myself "moderate" with some severe days/crashes but moderate overall.

@JoanDublin Your son sounds severe to me and it also sounds like his sleep cycle has completely reversed. I am wondering since Melatonin made him sick, if the doctor can give him something else for sleep? Have you decided yet if you are going to travel to see KDM in Belgium?

 

[Dr.Patient]

hi, there are a number of different ranking systems for mild/moderate/severe/(very severe).

In a four-tier system, I rank as severe, but in a 3-tier system, I may rank as moderate (I can eat and toilet by myself, walk through my house [even if I sometimes grab furniture for balance or fall against the wall], and read and use a computer at least for a while), though on some 3-tier systems I rank as severe (these lump very severe together with severe, or ignore very severe).

If I had no medicine, I would likely be very severe, but thankfully I have anti-inflammatories, migraine medicine, potassium supplements, etc.

ICC Primer:



CCC:


from Appendix 3, after a list of symptoms (this is actually an explanation of how to rate the individual symptom severities)

see more scales at:
http://www.pugilator.com/awareness/review-of-6-mecfs-ability-and-severity-scales/

For some reason, it's pretty normal for it to be easier for us to function at night. I think part of it is that the environment is quieter (e.g. less traffic) and cooler, but it could be something else.

It's also normal for morning appointments to be much harder. Please do everything you can to schedule later in the day whenever possible (I know this is not always possible, as doctors' schedules are difficult).

I have cancelled some of my own appointments due to unable to bear the trip. Please do not drag your son to the doctor in tears unless it's some kind of emergency. Reschedule the appointment, schedule by phone/video chat or home visit if possible, etc.

You may wish to join the 25% ME Group for support and advice. You can also contact SpeakUpAboutME to get in touch with other mothers and young people. I think there's also a facebook group for parents.

Thank you, this led me to look up the ICC criteria and the ICC PRIMER, and there is a discrepancy between them regarding mild, moderate, severe, and very severe. Please look up my post on Terminology, definitions, and criteria, thanks

 

[WillowJ]

Thank you, this led me to look up the ICC criteria and the ICC PRIMER, and there is a discrepancy between them regarding mild, moderate, severe, and very severe. Please look up my post on Terminology, definitions, and criteria, thanks

that's not really enough information for me to find your post without more work than I can cope with right now. As I said in my post, there are a variety of scales and they do differ from one another. If you want to link to your post or post another scale, that would be fine.

 

[WillowJ]

@Gingergrrl43 I was able to find Dr. Bell's scale here. Not sure why it doesn't show up in his newsletter or someplace like that.

 

[Valentijn]

It sounds like he's "severe" but not "very severe".

I was a bit shocked to read the CCC/ICC descriptions because I'd considered myself moderate, but it looks like I've been "severe" over the past year or two. New study coming up: ME patients underestimate the extent of their disability!

I can get to the bathroom, get food from the fridge, prepare very simple food if I'm slow and careful about it. I can't really shower or go upstairs without exceeding my limitations, but I do it anyhow twice per week. I can't do any house cleaning, except basic tidying. I leave dishes in the sink with some water to soak so I don't have to scrub them to rinse them.

I've been sleeping in the living room for several months now. So I only have to do the stairs twice per week, instead of daily. That helps a lot. We got a cheap little bed (and less-cheap mattress) from Ikea, and rearranged the living room to fit the bed in. I don't know if that will work for your son though, if the light sensitivity is too severe for that. We have curtains that are completely light-blocking, which is great when I'm having light issues.