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CFS or ME or Severe ME

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
thou there are different grades of severity in ME.. as an overall disease, I dont think the disease ME should ever be called a "mild disease" as patients (unless they are actually recovering) are generally a lot more disabled compared to other illnesses eg say diabetes ( even a severe diabetes patient with leg ulcers could do more then most who have mild ME can).

You dont hear people thou saying diabetes is a minor illness even if a person has just been diagnosed with it. Its always given seriousness. Pity it isnt the same for ME.

Many diseases get graded in how severe an illness is but it doesnt mean the situation isnt dire eg even cancers get graded stage 1, stage 2, stage 3....

I think the issue comes when a "mild" ME person is thought by someone not knowing about ME that they then have a mild disease. Terminology issue?
 
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Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
thou there are different grades of severity in ME.. as an overall disease, I dont think the disease ME should ever be called a "mild disease" as patients (unless they are actually recovering) are generally a lot more disabled compared to other illnesses eg say diabetes ( even a severe diabetes patient with leg ulcers could do more then most who have mild ME can).

You dont hear people thou saying diabetes is a minor illness even if a person has just been diagnosed with it. Its always given seriousness. Pity it isnt the same for ME.

Many diseases get graded in how severe an illness is but it doesnt mean the situation isnt dire eg even cancers get graded stage 1, stage 2, stage 3....

I think the issue comes when a "mild" ME person is thought by someone not knowing about ME that they then have a mild disease. Terminology issue?

Agree, perhaps it should be moderate, severe, very severe, profound (homebound, bed bound ..).
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Agree, perhaps it should be moderate, severe, very severe, profound (homebound, bed bound ..).

This may be difficult to name. I did have mild ME for a very long time--I had a mild stage of a serious illness. I didn't know what was wrong, doctors couldn't find anything, but I knew something was wrong. Yet I could work full time and, to all appearances, carry on as normal. I had ME, but it took a very long time to reach a debilitating level.

I think this may be true for others here too.

Sushi
 

SOC

Senior Member
Messages
7,849
This may be difficult to name. I did have mild ME for a very long time--I had a mild stage of a serious illness. I didn't know what was wrong, doctors couldn't find anything, but I knew something was wrong. Yet I could work full time and, to all appearances, carry on as normal. I had ME, but it took a very long time to reach a debilitating level.

I think this may be true for others here too.

Sushi
My daughter was something like this during the first 5 years of the illness. She functioned normally, with no clear signs of illness, but didn't feel quite right. She also had several PEM episodes a year that lasted 2-4 weeks each. So she clearly wasn't right, but was "normal" most of the time.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This may be difficult to name. I did have mild ME for a very long time--I had a mild stage of a serious illness. I didn't know what was wrong, doctors couldn't find anything, but I knew something was wrong. Yet I could work full time and, to all appearances, carry on as normal. I had ME, but it took a very long time to reach a debilitating level.

I think this may be true for others here too.

Sushi

You made me think back into my past history, I often block things out of my whole ME journey. I too was mild (other then during crashes) for the first year of it.

I thou wasnt at a point back then in which it could of been thou labeled ME unless there had been a test for this. I certainly would not have met the current definitions of what they call mild ME. ie functional level at 50% or less.

I do not think one could trust one could safely diagnose such mild ME cases without an actual test for ME. (so till that time comes, much very mild ME cases much be going undiagnosed and probably many recovering before even a ME or CFS diagnoses can be made).

I was crashing about once every couple of months for 5-7 days at first and normal rest of time.
 
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Sidereal

Senior Member
Messages
4,856
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.

" 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"

Same here. Some of us "lose" most of the symptoms while at rest many years into the illness. I don't really look sick anymore so when disbelieving people ask me what it is that keeps me disabled, I find it hard to explain which makes it even more suspicious. My situation is exactly as Dr Hyde described above. For me the thing that makes it impossible to function in life is POTS and this rapid fatiguability (muscle and mental) as soon as I begin an activity. Any attempt to gently increase the amount I do ultimately results in deterioration and being able to do much less than my baseline. The longer I persist in trying to expand the energy envelope, the more damage I accumulate and the longer the time spent in bed to recover from the episode. But if I don't do anything (which includes standing) I feel ok most days.
 

Mij

Messages
2,353
@Sidereal yes it is more difficult to explain. My former hair stylist kept asking me how I was feeling for the last 15yrs, I started feeling uncomfortable always saying, "oh the same" to avoid talking about it, so I changed stylist. The new one is nice, I decided to avoid telling him about myself so he thinks I'm "healthy", the last 3 appt's he kept mentioning how "energetic" I was. This is my nature(in my forner life) to be high energy and vivacious, so it's difficult to change my whole personality even though I can feel my battery slowly draining lol Imagine if I told him I have "CFS" or any type of serious debilitating illness. What he would think? I avoid it at ALL costs.
 

Aurator

Senior Member
Messages
625
Unfortunately, in the US, even if you meet the ME criteria, you will be diagnosed with CFS because ME doesn't exist as a clinical entity here.
Yes, at my hospital in the UK they have a Chronic Fatigue clinic, and anyone getting a diagnosis there gets a diagnosis of CFS. There is no mention of ME. It is apparently regarded as an obsolete or inappropriate name.
I don't believe it's accurate to differentiate severity into ME or CFS. It seems you either have ME or CFS depending solely on where you live or who diagnoses you.
Yes, that's all there is to it, and yet some patients continue to insist they have ME, not CFS; whatever they're basing that assertion on, it has no firm foundation. Whether you call the disease or diseases we have ME, CFS, SEID or something else, they're all only placeholder names anyway. The important thing for patients is that the name should have no stigma attached to it and provide as little ammunition as possible to ignorant sceptics who have been allowed for too long to use belittlement of the name as a starting point for their belittlement of the illness.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Any attempt to gently increase the amount I do ultimately results in deterioration and being able to do much less than my baseline. The longer I persist in trying to expand the energy envelope, the more damage I accumulate and the longer the time spent in bed to recover from the episode. But if I don't do anything (which includes standing) I feel ok most days.
I've really shocked myself by witnessing my activity level in comparison to others. I've had so much improvement these past years that I enrolled for 2 classes in our senior's offerings. The ukulele proved impossible, as I get an almost immediate inflammatory response from the position needed by the hand on the fret board. The couple of people I interacted with around this told me I'd be fine, so-and-so plays with a missing finger, with nerve damage...

And I started a long-awaited Qi Gong class. Again, mostly oldies. Excellent teacher, very simple basic moves. And I can barely maintain a simple arm swinging movement:bang-head: I'll continue with this class, but the 2nd week I used a chair fairly frequently. In my own space, with my set of tasks, included shopping once/week, I feel good, a lot of the time not so ill. But seeing the reality of my performance, I'm reminded yet again that it appears that the majority of my healing over these 3 years has been my nervous system, and from there, my attitude, and working within my energy envelope. Most recently this has meant implementing Martin Pall's strategies for managing oxidative stress. Physically, I'm a very debilitated person.:ill:
 

Sidereal

Senior Member
Messages
4,856
But seeing the reality of my performance, I'm reminded yet again that it appears that the majority of my healing over these 3 years has been my nervous system, and from there, my attitude, and working within my energy envelope.

So true. I get a rude reminder of this every time I try to do something that's outside of my daily routine. Nearly all of my improvements in the past year have been a reduction in subjective perception of symptoms.