Very mild or prodromal ME/CFS

[Peter T]

Posts moved from 'Investigation of Remissions' thread.
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Can ME/CFS be so mild it gets confused as being just a normal low energy person?

This is something we have discussed in other contexts, such as people with gradual onset. The pedantic answer is that generally an ME/CFS [diagnosis] requires a 50% loss of function, so such pre or post states are not technically ME, but I personally find it reasonable to say that a not total remission or in retrospect with slow onset that we are seeing a very mild form of the disease.

It may be we can not answer this fully until we have a clinically useful diagnostic test,

 

[MrMagoo]

I too had a remission phase after a few years.
In my initial illness, I still worked full-time and socialised at weekends, would that be 50% less? Probably not, but I was constantly in pain, depressed and off sick, I also quit all outside activities like the gym and studying. I’d collapse after work. I remember missing trains because I was too tired to stand up from the platform to board.

 

[Kitty]

I personally find it reasonable to say that a not total remission or in retrospect with slow onset that we are seeing a very mild form of the disease.

Yes, me too. I think if I'd had a consultation with a doctor who really knew about ME/CFS I'd have been diagnosable even when I was quite mild.

The pattern was there. The ongoing pacing that was never thought of as such, the PEM mistaken for colds, the periods of cutting back on optional activities until the picture looked distinctly peculiar for a young, fit person. There was a kind of ... caution? ... that you didn't used to see in people until the mindset changes that come with parental or professional responsibilities.

(Life was vastly more carefree for young people then. You could decide to start a record label at the age of 17 and run it from the payphone at the pub next door to your mum's, because nobody ever said you couldn't.)

 

[Kiristar]

Yes, me too. I think if I'd had a consultation with a doctor who really knew about ME/CFS I'd have been diagnosable even when I was quite mild.

The pattern was there. The ongoing pacing that was never thought of as such, the PEM mistaken for colds, the periods of cutting back on optional activities until the picture looked distinctly peculiar for a young, fit person.

Likewise.
I had a marked susceptibitlity to infections and looking back, PEM was definitely evident.

In my case I didn't have gradual onset it was definitely post viral though.

 

[MrMagoo]

I had a lot of colds and virus problems before the “big one” which I couldn’t recover from.
Then a few years on, a few years of remission which started to slide away until it was “chest infection/flu/virus” every few months, every two months, cutting back on work hours, working at home….

 

[T&O]

Likewise.
I had a marked susceptibitlity to infections and looking back, PEM was definitely evident.

In my case I didn't have gradual onset it was definitely post viral though.

Yes, me too. I think if I'd had a consultation with a doctor who really knew about ME/CFS I'd have been diagnosable even when I was quite mild.

The pattern was there. The ongoing pacing that was never thought of as such, the PEM mistaken for colds, the periods of cutting back on optional activities until the picture looked distinctly peculiar

but I personally find it reasonable to say that a not total remission or in retrospect with slow onset that we are seeing a very mild form of the disease.

It may be we can not answer this fully until we have a clinically useful diagnostic test,

Me too Kiristar, me too Kitty ,and Mr Mgoo, and yes me too Peter…
(stating the obvious here)
diagnosis (unless incredibly fortunate to have a doctor well informed and interested in this particular illness ), is usually made after significant time spent searching ,after probably years of being notably unwell, so expect our onset ,our most-likely post viral onset, relatively common ? .

Peters right of course.
Without a useful diagnostic test its all hypothesis (particularly horrid for those in places resisting recent research and therefore entirely unsupportive as in germany. … b.depressing reading).
How can this be helpful ?

 

[Creekside]

Somewhere in my 20's, I noticed that whenever I ate an orange or drank OJ, a couple of days later I'd feel cold symptoms coming on: just a sneeze or two and that feeling of a viral infection coming on, and it would be gone a day or so later. Really insignificant symptoms, but a reliable correlation. Then at age 39 I ate some oranges, and felt those symptoms, but much stronger, more like a flu coming on. The next time I drank OJ, I was sure it was a flu coming on, complete with fever and chills, which abruptly went away after another day. After that, I reacted to other fruit juices and then other foods, in a standard type IV reaction. When I managed to accidentally cure that, I was still left with the same persistent symptoms, which I eventually realized fit the criteria for ME.

So, did my ME start in my early 20's, or was that an immune system oddity that triggered ME much later?

Well, these questions won't be answered until we have a proper diagnostic test for ME. I expect there are people with really mild ME who don't realize it and don't fit the standard criteria. Might there be people who have periods of "feeling lousy" who are actually having mild temporary ME? Since most people don't know about ME and PEM, why should they consider it a possibility?

 

[mariovitali]

Just to say regarding cases of mild ME. It took me quite some time to connect this but in retrospect I have always had issues with energy. I was 18 years old and when I was on holidays with my friends I was unable to go through a full day with them. I would need to go back at my room and rest while the others were out swimming, drinking, walking on the sun etc. The sun was a huge energy drain.

So basically my body was able to compensate until a stressor managed to disrupt this compensation. This is why I think it is critical to ask patients for any symptoms they had before getting ME

 

[Utsikt]

I thought the purpose of the CCC was to pick out a sufficiently homogenous group of patients for research.

Is there any reason for why <50 % impairment ME/CFS shouldn’t exist?

 

[Jonathan Edwards]

This is something we have discussed in other contexts, such as people with gradual onset. The pedantic answer is that generally an ME/CFS [diagnosis] requires a 50% loss of function, so such pre or post states are not technically ME, but I personally find it reasonable to say that a not total remission or in retrospect with slow onset that we are seeing a very mild form of the disease.

It may be we can not answer this fully until we have a clinically useful diagnostic test,

I agree. Most well recognised chronic disabling diseases come in versions so mild that they are impossible to distinguish for sure from ordinary aches and pains and fatigue.

I think we really ought to have a nomenclature a bit like that for genes and proteins. The standard thing is for the gene to be a short set of capital letters that usually, but not necessarily, work as an abbreviation of a lower case name for the protein. So the FN gene might encode for making fibronectin.

So we ought to have two two terms: ME/CFS for what we think the biological process (cluster) is that is marked by the eight DecodeME genes; and me/cfs for the syndrome or illness. In that framework people may well have mild or gradual onset ME/CFS but not qualify for me/cfs. We are also likely to accept that some people with me/cfs do not in fact have ME/CFS but some other condition, that may already be in the textbooks or may not.

 

[Kitty]

So we ought to have two two terms: ME/CFS for what we think the biological process (cluster) is that is marked by the eight DecodeME genes; and me/cfs for the syndrome or illness.

I agree about the idea, but the nomenclature might be a bit confusing for people who type in lower case nearly all the time due to disability.

My arthritis was noted first as ?RA, then ?erosive OA, then ?PsA. Eventually it arrived at PsA.

Not sure if the purposes are quite the same, but that's a good way of indicating unconfirmed suspicion.

 

[Mij]

This would most likely describe the gradual onset type of ME? I've read that some pwME were never good or participated in sports in their youth.

 

[Mij]

I was never sick and had energy to give away before ME. My parents were the same way and so are my siblings. One of my sisters has Hashitmoto. I'm not sure if genetics plays a role for me because I don't know of any extended family members who have any type of autoimmune diseases.

 

[Jonathan Edwards]

I agree about the idea, but the nomenclature might be a bit confusing for people who type in lower case nearly all the time due to disability.

Yes, I am not suggesting that nomenclature. But the double meaning of the single term causes no end of confusion - which people try to disentangle here. Sadly, I doubt that the research and medical communities will ever take o n sensible use of words. Even fundamental physicists mess things up like this. It is OK if people know which meaning you are using in a conversation but when words get floated about in reviews it can generate major problems for a whole discipline. (In physics the terms 'coherence' and 'action' are good examples, although the ambiguities are more subtle than just cause and effect.)