Hi Bob. I think you're right in that that's probably the biggest single issue that needs to be resolved and the one that is at the centre of so much friction, and yet often unnecessarily so, being largely fuelled by semantics, with CFS having been the dominant term in the US so that it takes time to even get to where you're speaking the same language - or understand each others' language, when the term CFS is used.
I think there are some genuine difficulties here though, that I hope this forum could help to resolve. Several times in arguments over related issues I've felt we came ever so close to resolving the political battles here, but never quite got there - but if we could achieve that common understanding we could begin at last to speak with a united voice I think.
So I'm going to stick my neck out and try to suggest some of the problems needing to be overcome.
If I can sum up the core of the problem as I see it: it's that there are a hell of a lot of people who either fall just short of the CCC, or who aren't sure whether they would manage to get a diagnosis under the CCC, or who used to fit the CCC once but are now in partial remission but still with serious problems...and those people are still very ill, permanently sick for life, with an illness that doesn't fit anywhere, that has no other name, no other category, and which resembles ME more than it resembles anything else.
So the question becomes: where exactly
do you draw the line (I love the CCC but does it really draw an exact
line?!), and what on earth do you expect to happen to those people who happen to fall short of that line? All too often the most vocal line I hear seems to be saying: Well I don't care about them, I am well inside the CCC, and stuck there, and everybody else probably belongs with the psychs - those are the people who just have depression and need CBT - but anyway what becomes of them isn't my problem.
But it is
their problem, like it or not. That attitude will never solve the problem we all face, because to somebody who fits - say - Fukuda and then some, but not CCC, from their point of view there is no difference between Wessely and the psych lobby and the hardcore "true ME" campaigners. Both those same groups of people seem to be saying - each in their own veiled way: I don't believe in your supposed illness, I think you're just depressed and you need psychotherapy. Talk about being caught between the devil and the deep blue sea!
For myself: I have been sick 15 years, I have permanent immune vulnerabilities that I acquired in my mid-twenties, I went through several years where I could hardly move without pain, I still have a permanent head cold, severely restricted diet or I get IBS, effectively housebound or I get my MCS and mold sensititivities triggered, I discovered from this forum that 'Orthostatic Intolerance' means difficulty when standing still so I learned that I do have that too after all, I get enormously fatigued whenever I try to get active and sleep has never
been refreshing for 15 years, I used to sleep 14+ hours a day...but nowadays I avoid anything that makes me ill, including physical activity, and I can work part-time and basically keep myself on a fairly even keel so long as I accept that I can't go beyond a threshold of about 50% of normal activity. I've suffered from memory and concentration problems when really ill, and I suspect that some aspects of my cognitive processing are subtly but permanently impaired, but I don't think even then I would class that together with the really severe neurological problems some people get, and persistent infections and severe flus have never really been a feature for me. I haven't mentioned the itching, or the chronic neck and back pain and burning sensations in muscles...but those things come and go and there's a whole load of stuff I haven't listed too I'm sure.
But...do I really
fit the CCC? Probably not, right now. Perhaps that's Dr Myhill's fault!
Maybe if the CCC was more tightly defined clinically, it would show up that I do, actually, fit the pattern, if I failed an exercise challenge for example, but...I just don't know if I fit that definition any more, and I'm not even sure that I ever quite did. I do know for sure that there are a lot of people who seem to be much, much sicker than me (though it's hard to judge based on how people describe things because that does vary), but they do seem to have a very similar pattern of symptoms, so I honestly don't know whether we belong in the same category or not. I have a diagnosis of MCS from a doctor who believes in it, and a 'diagnosis' of 'ideopathic immune disorder' from my GP, and that's it.
What I do know for damn sure is that my permanent immune vulnerability isn't related to my mental state, or suppressed childhood trauma, or my reaction to stress, or maladaptive coping mechanisms, or false illness beliefs, or any of that horseshit. And whatever it is that's happened to me, it has ripped the guts out of my life and left me with no explanation, no support, and before the WPI came along, no glimmer of hope for the future whatsoever.
So: the problem for me is this: what are you saying to people in my situation? What becomes of those who have ME/CFS but who don't fit the Canadian criteria? When you draw that line with the CCC, are you defining it with a realisation that it becomes then a diagnosis of exclusion in itself - excluding anyone who doesn't fit the definition and abandoning them to a new kind of limbo that is for sure going to leave them at the mercy of the psych lobby?
Don't get me wrong: I am emphatic that in research
terms, study should be almost wholly if not entirely directed towards the sickest of the sick, and to people who have well-defined CCC. If you want to get decent, consistent, meaningful results, and understand the epicentre, the core of the disease, then that's a no-brainer. That has to be in everybody's interest - but if you did that, and got your scientific breakthrough (assuming of course we don't already have it with XMRV) then I would pretty much be prepared to bet the farm that the real
condition you identified in terms of the pathology would turn out to include a hell of a lot of people with 'Fukuda but not CCC'.
I think this must all seem like a really simple question to anybody who falls well within the CCC, but the fact is that it isn't, because of the reasons I've given above. I really want to say to anybody of that point of view: if the line is going to be drawn at the CCC, if you want to achieve that separation, then firstly you need some damn good evidence that sharply distinguishes that condition from anything that falls just short of it, and secondly you need some kind of a decent plan for what is to become of everybody on the other side of that line.
I honestly think it's as simple as that, though I stand ready to be corrected as always. If ME/CFS is where I seem to fit, if I have a chronic immune condition with no name that's completely unrecognised but which sounds to me
a hell of a lot like ME (well, in my case, a little more like the definitions I've read of gulf war illness perhaps)...if I had that Fukuda diagnosis, instead of 'MCS'...well anyway, what are you saying to me
? There are an awful lot of me, apparently - from the best estimates I've seen it appears there are between four and ten times as many people with 'CFS' but not CCC than there are of the CCC people, so...well, if your plan is basically to try to throw us to the wolves then don't be surprised if that meets with some opposition...
I just think that this is the
issue that the ME campaign world needs to somehow get to grips with. As I say, I can totally understand why you would say: we should never have been lumped together, we shouldn't have to care about you, we have worse problems than you, and we don't care and we even agree with the psychs that a lot of you are probably just depressed. But I want to illustrate here, again, that from my POV then if that's the message you're putting to me, then you might as well be Wessely himself for all the difference it makes to me: you seem to be saying the same thing to me that he's saying.
I don't know whether I'm putting this across very well and I've been going on for a while so I'd better wind it up, but the last issue I want to bring in on this theme is the WPI findings.
So what of the WPI findings of XMRV? When we did our first polls of XMRV positives/negatives here, when the first test became available, what was extraordinary about those was that there was no correlation whatsoever with positivity and severity of symptoms. 'Moderate' and 'Severe' were positive or negative in equal measure. Furthermore, we then get the news that 100% of Lyme and mold sensitive people (that's me for sure) also tested positive for XMRV. And 4-20% of the general population have it. And loads of other illnesses have it too. And finally note that it replicates in the presence of cortisol (related to stress).
What's been remarkable to me is that all
of those WPI findings seem to run contrary to the dogmas of many of the most vociferous campaigners...and yet they haven't taken those findings on board at all, it seems. So: stress is still irrelevant, and there's a clear difference between CCC ME and everybody else who is just depressed...even now that we have the WPI finding that all of us have XMRV in common, and even though the WPI have clearly implied that they think that nearly everybody with CFS has XMRV, and so do loads of other people.
It seems to me that the WPI's science, the models we have of XMRV, paint a pretty clear picture and it is not
one that suggests that any lines can actually be drawn down the middle of the ME/CFS world. The picture looks to me like this: XMRV together with co-infections defines a huge range of ideopathic illnesses, and what your symptomology looks like is mainly defined by your specific history of co-infections and perhaps also by your genetics.
So I would currently guess this: I have XMRV with mold/fungus co-infection, and maybe a minor head cold and some gut bacteria as co-infections; all of those are now chronic conditions and XMRV is maintaining their chronic infectious state. People with 'classic ME', with clear sudden flu-like onset, have EBV, and/or HHV, maybe specific strains of those, as chronic co-infections with XMRV. People with chronic Lyme got bitten by a tick and because they had XMRV they never recovered from Lyme. And so on and so on...
That's my model, which looks like what the emerging science is suggesting, and moreover that's basically similar to how I would have seen the whole spread of neuroimmune diseases anyway - all united by some common factor and further defined by an individual 'fingerprint - and so it seems to me that if all that is correct, that leaves the old political landscape very much changed...for the better...
I would like to hope, then, that we can all get behind the CCC (perhaps developed further, with clinical tests included) for research purposes. I have always believed that it's logical to study people whose condition is well-defined and obviously serious, and who clearly have the same illness. I've always believed that it makes sense to study the sickest people first - you are surely more likely to get the best understanding that way. So: that, I hope, we can unite behind. We can all also all agree that we need massively more research into biomedical factors
in neuro-immune diseases and an end to the psychologising of our suffering. Themes like those seem to me a clear basis for consensus.
But stating that CCC ME must be defined as a separate condition from 'CFS', without a non-psychosomatic model for the future of those chronically ill with 'CFS' but not CCC...well, I don't see what's in it for somebody who doesn't fit the CCC. And like it or not, my hunch is that without that plan for everybody else, and a sense of solidarity between those on either side of the line, it just ain't gonna happen...
I'm trying to take things forward here, rather than round and round in circles, so I hope I haven't caused any offence in the above...it's an attempt to identify and clear a roadblock in our community..but this is just the way I see things, so: am I making any sense here at all?...