Sorry Bob, but unless you mean something quite different to what you post then I'm at a loss as to when in any of this you've argued for community, except when writing about community. From the outset you appear to have argued that there is a REAL difference between ME and CFS, that's at least two communities, you've also argued for the right of one to lobby separately to the other. Maybe you're missing it, but many who would qualify as ME under the notional definition of ME but who are saddled by the establishment as CFS or PVS don't like being excluded, that isn't encouraging of community but divisive.
Holmsey, when I first started posting on this thread, it was in response to some strongly worded posts (including some rude and insulting posts - now mainly deleted) about members of our community/communities.
My intention was to put forward a different perspective about the subject, in the hope that the people posting strongly worded comments could see that the issues were complex and multi-faceted.
So, my posts could very well have been one-sided, because I was trying to explain a particular advocacy position.
But that doesn't mean that I hold the same views as the people that I have been defending, other than where I have specifically expressed my own opinions.
Equally, I don't like seeing 'ME' advocates saying things that deeply offend people who prefer the use of the term 'CFS'.
I have often rigorously challenged 'ME' advocates on this forum in the past, by explaining how their opinions impact on other people.
I know from experience that any anger and frustration, surrounding this subject, is mainly based on misunderstandings; different personal perspectives; and a breakdown in communication.
Once people start to understand each others' perspectives, then I invariably see the two sides coming together and supporting each other, if not entirely agreeing with each other.
It doesn't always happen, of course. Sometimes the differences are irreconcilable.
(Unfortunately, this breakdown in communication and understanding also appears to be being played out at the CPG. It's unhelpful and unproductive.)
All the time, in this thread, I've been coming from a position of attempting to challenge the sometimes divisive opinions that have been expressed here, which I've found offensive at times.
It's ironic that you accuse me of being divisive, when I have been attempting to show people that some of the opinions that have been expressed in this thread are divisive and counter-productive.
On this thread, 'ME' advocates have been criticised, unfairly in my opinion, and I've attempted to challenge those who make those criticisms, by trying to explain the complexities of the issues.
That doesn't mean that I always agree with 'ME' advocates.
(I have explained my own opinions quite clearly, I think, in at least one post.)
I've also wanted to point out that the information available to us it incomplete, and that we can't make any meaningful judgements until we know
exactly what has happened.
You seem to have misunderstood where I'm coming from.
Maybe that's entirely my fault. Maybe I haven't expressed myself well.
My position isn't that "ME is different to CFS", and I don't think I've said that in such simple terms.
The discussion in this thread has gone around in circles, and I've clearly failed to do what I set out to do.
But I do hope that some members at least have come to understand that the subject is multi-faceted.
Many members of the community support the CCC and ICC, for various reasons.
I think we should all try to understand these reasons before we dismiss the wishes of people who support the CCC and ICC.
I think the main reason for the desire for these criteria to be used is based on first-hand personal experience.
And there are also political reasons, and scientific reasons.
My personal position is that I support the use of the CCC and ICC for research purposes, along with any other selective biomedical criteria that researchers wish to use.
The CCC/ICC are based on years of careful observation by many clinicians.
They have not just been plucked randomly out of the air.
If there are no better ways to define an illness, then careful observation is the only way to do it, and it is the traditional way to do it. (It's what the CDC is doing right now with its new definition.)
So for this reason, and because of my personal experiences, and the experiences of other CFS/ME patients, I believe that the ICC & CCC have value.
Mistakes can be made, but these are corrected as time goes on and as more knowledge is acquired.
Wanting the ICC and CCC to be used for research has nothing to do with dividing a community.
It's about wanting the best science. Using the most selective criteria available is good science. It moves the science forwards for
everybody, not just the researched group.
I'm not saying that patients should be divided up.
I'm just saying that the more selective biomedical criteria should be used in research.
Any selective biomedical criteria. It doesn't have to be 'ME' criteria.
I agree that all patients should be included in a clinical sense, but that doesn't mean that patients can't be sub-setted in a clinical setting.
Sub-setting for research is an obvious approach.
I think that sub-setting in the clinical sense could have advantages now, as well.
Patients could be diagnosed using the various criteria, in clinics, in order to further the research, and further our insights into CFS/ME.
For example, those meeting the ICC criteria might all respond to similar treatments in a similar way.
Those falling outside the ICC, but within Fukuda, might be the best group to be investigated for other causes of their fatigue.
Those falling outside Fukuda might respond well to psychological interventions. Or they might not.
We don't know until we try it out.
So why aren't patients being diagnosed using various criteria now, and strict records kept, and records kept on the paths of their illnesses?
This could give us a lot of invaluable information along the way.
Just saying that we are where we are, and no changes need to be made will keep us exactly where we have been for 30 years.
We don't have to all agree with each other, but let's at least try to understand each others' opinions, experiences, and perspectives, and why we have them.