The 'problem' I referred to Mark is one of the objectivity of that diagnosis. I too was diagnosed with ME prior to the adoption of the label CFS by some doctors and the 'establishment'. What does the diagnosis of ME mean?
I grew up if you like only recognising 'ME'. The first book I was bought on the subject was from Charles Shepherd. All it spoke of was 'ME'. Does this history make my initial diagnosis using that term mean I have something more valid? No. Of course not.
If you pop along to a doctor now, or even then, and you see even a specialist who uses the label ME and even jots this down on your notes - so what? What difference does it make and how will this effect the situation should e.g. the unlikely occur and ICCME is adopted?
Would all those like me previously diagnosed - or all those currently diagnosed - by a doctor using the label 'ME' be any safer in their diagnosis? If everyone is now being confirmed as having 'ME or CFS' by reference to NICE in a clinical setting - does that make their diagnosis any less relevant to those like me who came before?
Because my diagnosis previously, and since, on occasion has come from e.g. an immunologist conversant with 'ME' - does that make my diagnosis safer, more valid? Does it rely totally on the experience of the specialist himself?
What of those doctors I have seen over the years who noted 'CFS' on my notes because they were perfectly able to use that term should they wish to do so? Or those few who have noted 'encephalopathy'?
This is what I mean by a 'problem'. Even when objective testing is introduced based on biomarkers for some aspect of the reported symptoms - will this lead to everyone being re-diagnosed? I doubt it very much.
If a treatment is produced based on e.g. a muscle/lactic acid test, then people might be tested and treated accordingly with a dose dependent on the test result - but for the whole condition? No.
I simply cannot see how they will be able - practically - to re-appraise everyone and they aren't going to bother when all we have a competing criteria that lead to no quantifiable treatment improvements or better quality of life for patients.
I do agree with some of the points that you've made in this thread, Firestormm, and I think I understand your perspective.
The whole field of 'CFS' and 'ME' is muddled and it maybe very difficult to separate the two, in practical terms.
But I do think that very good attempts have been made to define an illness called 'ME' ('ME' has been defined in various ways.)
I personally define 'ME' very loosely, with PEM, or PENE, as the only necessary defining feature. (But I know that many wouldn't agree with me about that.)
And we all recognise that there are many various symptoms that people experience in addition to PEM.
I agree with you that some 'CFS' definitions
can define 'CFS' in a very similar way to 'ME', and can be quite selective, so they
might only select neurological or immunological CFS/ME patients.
I also agree that patients defined by an 'ME' criteria
might not all have the same discrete disease.
Or that a
vast majority of 'CFS' patients may well have a very similar disease.
I agree that it's impossible to know exactly what we all suffer from, given the current state of research, and the lack of powerful epidemiological studies.
But, the problem that I personally have with the term 'CFS', is that it has been used as an all-inclusive, catch-all, term. For this reason, and all the reasons that Mark explained, the term 'CFS' is unhelpful.
'CFS' doesn't describe an illness, and it isn't supposed to.
Whereas, 'ME' is at least an
attempt to define a discrete illness.
So, the two terms have different uses, or at least, they had different uses before they were muddled together.
'ME' descriptions have always been based on observations of a closely related cohort of patients. Or that was the intention.
This is the case for the ICC, and the CCC, as well.
The descriptions are not just plucked out of the air.
They are an attempt to describe and define an illness, or a pattern of symptoms, experienced by patients who have very similar illness experiences.
Maybe the same could be said of some 'CFS' criteria, but the loosest CFS criteria only require 'fatigue' as a symptom, and so this does not attempt to define patients with a closely related pattern of symptoms.
So, I agree that it's all a muddle, but there are many reasons that many patients relate to the term 'ME', or prefer the term 'ME'. (Mark has explained some of the reasons.)
But also, those patients who relate to the CCC/ICC (i.e. they read the diagnostic criteria, and recognise their own illness as being carefully and accurately described) will often prefer these diagnostic criteria, because they are obviously more appropriate for them, if they describe their illness accurately.
Anyone who relates to descriptions of 'ME', such as the ICC, will say to themselves "aha, that's exactly what I've got, and I want it investigated, and researched". But if research is carried out on 'CFS', then anyone who is convinced that they've got 'ME', just sees funds being wasted, and resources being drained into pointless and fruitless exercises.
So, it's complex and muddled, but many patients see their illness being described accurately in some of the more specific 'ME' diagnostic criteria, which are based on observations of patients with very similar patterns of symptoms.
For me, it's crucial that research funding goes into well defined cohorts.
I'm happy for any well-defined cohorts to be investigated, however they are defined.
The various 'ME' criteria are one way to try to define a selective cohort, so it seems very sensible to research these cohorts,
at least alongside 'CFS' cohorts, or other cohorts.
I'm
sympathetic for the clinical use of the term 'ME', but also sympathetic to all the objections. I can relate to both sides of the argument.
I'm sympathetic for using 'ME' in a clinical sense, simply because I think it helps move the arguments forwards, re biomedical/psychological models, and could lead to more appropriate research being carried out. But I wouldn't necessarily want a very selective criteria used exclusively in a clinical setting. An inclusive 'ME' diagnostic criteria could be used, or more than one ME/CFS diagnostic criteria could be used alongside each other, and the results could be used for epidemiological research. Why use just one diagnostic criteria?
Personally, in a clinical setting, I would want 'ME' to include all 'CFS' patients who experience PEM. So it would be very inclusive. Or more than one criteria could be used.
I personally think this would be helpful, but I understand the arguments against it.
I don't think that CFS and ME patients should be separated. I think nearly all of us have an immunological illness. Many of us have had fluctuating levels and types of symptoms, from being severely affected to being mildly affected. So many of us could have been diagnosed with 'ME' at some point during our illness, but might only get a 'CFS' diagnosis later in our illness, or vica versa.
But I do agree with you that we'd be kidding ourselves, if we thought that the use of the term 'ME' would automatically change everything for the better overnight. That's partly why I usually say that the name issue is a bit of a distraction.
But I do think we need to push for the recognition of subsets. I think this is crucial for all of us.
Even
if we can't accurately define subsets at this stage, I think that the
recognition or
acknowledgement that subsets exist would be a massive step forwards.
It would mean that researchers could start attempting to define subsets, and could more easily research any subsets that they thought appropriate.
(Mark explained why it's important to research subsets, and there are many reasons why it's crucial.)
Jonathan Kerr had his research funding turned down I think partly because he was attempting to define subsets. I can't quite remember, but he might have been recruiting patients using a more selective criteria than the NICE definition. I can't remember all the details now, but this sort of behaviour by MRC funding panels is unacceptable, and is partly made possible because of the loose 'CFS' (fatigue) criteria that are in use.
It's such a complex issue, and I don't think there are any black and white or simplistic answers.