This thread has confused me more than any other.
will the real ME/CFS please stand up?
It seems to be different to each person.
Illnesses are not defined that way. Maybe this illness does not exist at all.
Maybe it's just whatever any personal experience dictates?
It seems like everyone is describing a different illness.
So, what is the commonality here?
Well, ME is a multi-symptom illness, and different symptoms can be predominant at different times, either in an individual, or in different individuals.
I think that was Jamie Deckoff-Jones' main point.
I think she was saying that it's a shame that the new criteria don't put more of an emphasis on fluctuating symptoms over time.
That was how I read it anyway.
In which case, she isn't suggesting that any of the criteria be removed, but that she would prefer that the ICC states that a physician should take into account a patient's present symptoms and the symptoms at the beginning of the illness, and everywhere in between.
Having said all that, I don't particularly recognise Jamie's description of ME either, and I agree with you Nielk, I think that PEM/PENE should be a prerequisite for ME, whatever stage of the disease we are at. Also, I'm not sure how it is possible to have flu-like malaise, and not be foggy headed? But maybe it's just not helpful to pick apart and analyse Jamie's symptoms. She is just one individual, with a range of complex symptoms, and if she doesn't fit into the ICC's criteria, then she doesn't.
Maybe this demonstrates how heterogeneous the CFS/ME diagnostic criteria are?
With regards to sudden onset and gradual onset, Byron Hyde's has discussed this in detail, and he says that he only accepts 'sudden onset' as an indication of ME, unless the ME is precipitated by chemical exposure, in which case he calls it 'secondary ME', and then it can be gradual onset.
BUT, he says that sudden onset can be obscured, and people don't always notice it, and just
think that they had gradual onset. This works in various ways: a person might have suddenly got ill many years ago, and then had a long remission, and forgot all about the original event, before the symptoms slowly appeared again. Or the sudden onset event might have been very mild, and the patient didn't think it was a significant event, and as time goes by, the symptoms become more severe until they become a serious problem.
So it's complicated.
Not everyone is going to be happy with the new criteria. Some people will be excluded by it. I think that this is something that we are going to have to face up to as a community, and find a way to deal with the problem, kindly, in a caring and meaningful way. Personally, I would prefer that the ICC was just used for research to begin with, because this will help select a more homogeneous cohort of patients, and give us more meaningful research results.