• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CFS or ME or Severe ME

Dr.Patient

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Mij said:
@Dr.Patient I see. So these categorizes are activity based and not symptom based.
Click to expand...

Yes, and the big thing is this- doctors think you are faking your symptoms to get disability because because of your symptoms, you cannot work (Activity). Social security wants what you can do despite your symptoms. While our symptoms are killing us, doctors and social security disability still think we should be able to work, because they trivialize our symptoms.

So, while we may still have periods when we feel well, a lack of consistency of this, still means we are ill.

That is why I based my classification on activity levels, thanks.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
But the symptoms and activity levels are intertwined. If I am having tachycardia in the 150's, that is a symptom but it also eliminates me being able to do any activity and takes several days to recover. How do you fully separate symptoms from activity level?
 
M

Mij

Senior Member
Messages
2,353
I don't have many symptoms anymore when I am at rest. I get viral symptoms, severe dizziness etc that can last a few minutes to a few months at times, but overall I'm not that "sick" anymore.

My inability to produce energy is what keeps me disabled.
 
M

Mij

Senior Member
Messages
2,353
lansbergen said:
Neither do I but activity will produce symptoms. For me pain is a warning sighn to stop and rest. If I don;t I will pay.
Click to expand...

I don't experience pain, my warning sign is feeling irritable and needing to lie down immediately. I think this explains it well:

" In phase #3, the M.E. patient is always prone to unusual and persisting muscle and CNS fatigability after relatively normal physical or intellectual exertion. The patients are not chronically fatigued. When unstressed physically, intellectually or emotionally, the M.E. patient appears totally normal and often has no difficulty doing very short-term tasks. The problem is above all, one of endurance and once exhausted, the increasingly lengthy time to recover to a reasonable degree of activity"
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Forbin said:
The ICC definition of ME uses these severity levels.

Mild: an approximate 50% reduction in pre-illness activity level
Moderate: mostly housebound
Severe: mostly bedridden
Very Severe: totally bedridden and need help with basic functions.

http://onlinelibrary.wiley.com/enhanced/doi/10.1111/j.1365-2796.2011.02428.x/
Click to expand...

Nods, that distingishes between mild and severe ME etc thou one can have a severe ME patient like myself who is not doing much more at all then a mostly bedridden patient but is only avoiding being fully bedridden again by hardly doing much on feet stuff at all eg using a wheelchair a lot.

But that definition I think right now is the best we got for distinguishing (thou no consideration with that is being given that the person may be only able to get out of bed cause they arent hardly doing any normal life stuff at all).
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Gingergrrl said:
That is interesting and by this definition, I am moderate but there are some very basic functions that I require help with so not sure where this places me?
Click to expand...

Gingergrrl.. I have the same issue, my functional level thou classified housebound on this isnt much better then bedbound patients, I cant cook most my meals, I cant do my own dishes etc etc.. it doesnt consider if a person may be still able to go out but in a wheelchair but only with support etc.

I couldnt call myself moderate when I ending up being ambulanced to hospital sometimes once every two weeks cause I've collapsed and cant even sit up and cant even take myself to a toilet at times (Ive at least twice in past 12mins ended up covered in pee and needed my clothes changing in hospital). When I cant look after my own life needs. Even on ME standards.. how can one call this moderate?

Im a severe patient and would be actually bedbound if I did more but I keep myself from being so by not doing basic life essential things.

The ME severity levels does give a "basic" indication how a persons severity could be graded, I think the persons whole situation needs to be looked at.

eg a person looks less severe then they may actually be if another is helping them a lot so hence stopping them from crashing and getting worst like they would be otherwise.
 
Last edited:
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Dr.Patient said:
I agree on the inaccuracy of these reduction levels. That is why I propose "mild" (can work full time, personal and social activities reduced) "moderate" (can work part time only) "severe" ( cannot work at all, but can leave home several times a week) and "profound" (home or bed bound).

At this point in time, this classification should be essentially a disability based one.
Click to expand...

The chart on how ME is rated.. I dont look at it as how some here are seeing it, instead I see that rating from the ME point of things not in comparison with normal people are. eg "That is why I propose "mild" (can work full time, personal and social activities reduced)"

That is unlikely even to qualify at all for ME as persons level needs to be reduced by a certain amount (50%) before they even can be said to have ME. and then from there.. ME patients are grouped into if its mild ME or whatever.

You cant compare ME levels for normal people when its a ME rating. (well you could but there would be a huge area at the same in which ME people dont even fall into)
 
Last edited:
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Mij said:
I don't experience pain, my warning sign is feeling irritable and needing to lie down immediately. I think this explains it well:

" In phase #3, the M.E. patient is always prone to unusual and persisting muscle and CNS fatigability after relatively normal physical or intellectual exertion. The patients are not chronically fatigued. When unstressed physically, intellectually or emotionally, the M.E. patient appears totally normal and often has no difficulty doing very short-term tasks. The problem is above all, one of endurance and once exhausted, the increasingly lengthy time to recover to a reasonable degree of activity"
Click to expand...

Its that Cheney quote? (Ive always fit very well under the Cheney stuff).
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Mij said:
I don't have many symptoms anymore when I am at rest. I get viral symptoms, severe dizziness etc that can last a few minutes to a few months at times, but overall I'm not that "sick" anymore.

My inability to produce energy is what keeps me disabled.
Click to expand...

I think that is just a result of very good pacing, it doesnt show how sick you truely are if you didnt pace well.
 
GracieJ

GracieJ

Senior Member
Messages
773
Location
Utah
I fall under the mild to moderate category, but it is all relative, as @SOC mentioned. I am back at work and 75% functional, but 75% of what? Compared to housebound or bed bound, I have it pretty good. But this is with a drastic reduction from anything normal. I cringe when someone describes my case as mild, not because I think it is worse, and I do not have the need to win the mine-is-really-bad contest, but because what I experience is NOT mild. Also, take away the supplements I use to cope, and suddenly I can hardly make it out of bed for a few hours each day. My untreated baseline is very different from the managed one. So I think my case is moderate but managed. I really would not want to bring on all the extra symptoms to prove to anyone where baseline really is just to be fairly assessed.
 
You must log in or register to reply here.