CCC should be adopted asap by everyone as THE definition. I think patients agreeing on Fukuda as a 'type II' would not be good for us at all because it would give it legitimacy, but mostly because it is not a 'type' as in type I and type II diabetes. Psychs will use this to say 'there are so many different types, it's just a wastebasket.' CCC is the most accurate definition we have for this discrete neuro-immune disease. Just go 100% with that. We may already have subtypes within CCC, actual subtypes, let's keep it simple and true.
We demand what is true! Then let 'them' try to water it down and confuse it as that is 'their' job.
Sorry Justin, but if you've read my first post in this thread you'll know that I've already gone through the reasons why this approach simply won't do. It isn't good enough, and it will never happen because it
cannot happen.
If you are going to take a diagnosis that has been assigned to several million people, and redefine that definition (OK, restore the original definition) such that only a minority of those several million people will retain the diagnosis of ME/CFS, then you HAVE to say something about what diagnosis or categorisation you are proposing for the majority of people who have that diagnosis now and who have no alternative. And before you get started, what you say should
not just be to adopt the language of your oppressor and apply the psych lobby theory to everybody else and claim they are all 'just suffering from depression'. Some people do that a lot...and it makes them no better than the psychs...
The motivation here is that we all agree on the importance of the CCC criteria as a core definition of the disease. I think there is also a consensus that nearly all
research should use the CCC. But for a clinical definition, you just can't take away the diagnosis from hundreds of thousands of people without any plan or suggestion for what to do with those people.
Somebody posted on another thread today that they "hate everybody who thinks they have this but don't". This comment is an obscenity - but I'm grateful for it because it's the most explicit statement I've ever read expressing the attitude that some campaigners for the CCC express frequently, to the great distress of many. IMO this is one of the biggest issues, if not the single biggest problem, that we have to overcome as a community. Somehow, the patients with an attitude like this need to be helped to grow up.
Whether they actively abuse such patients, whether they just hate them, whether they blame them for all their own suffering, or whether they simply say "I don't care about them, they are not my problem", campaigners for CCC ME need to take a good look at themselves and ask themselves what is their attitude and what is their proposal for everybody else in the wastebasket, if they want to campaign for sole ownership of the rights to ME. If they expect to take over the wastebasket and kick out everybody else with a different definition, and to do this as a minority, than they shouldn't be surprised by the perpetual failure of this strategy.
The backplot is well-known to all of us. The definition of ME was progressively broadened during the last 30 years or so, watering down the definition and including more and more people with vaguer and vaguer symptomology, frequently characterised as "patients who just have psychogenic depression". And so we all end up lumped together in what's accurately described as a wastebasket, in a situation where no research can ever make progress because the patient group is too heterogeneous for any findings to ever stick.
Fine: we all know that, and we're all angry about it, and frustrated by how we're trapped by it. People are being diagnosed with ME/CFS even though it's very unlikely in many cases that they have the same illness as those with ME. We all get that.
But to
hate those people who don't have ME but get dumped into the same wastebasket? To
hate those patients for that? Words fail me to describe that attitude. Hate Wessely if you must hate, or hate psychologists in general, or hate the medical establishment, or the government, or the CDC...if you must express yourself in terms of hate, then direct it at the people who are responsible for defining and handing out diagnoses. But to hate the other
patients who have this diagnosis, for being lumped in with you?
If we're not careful, it seems we are just being asked to campaign for the construction of a brand-new wastebasket for "people who fall short of the CCC" - a wastebasket for which we are asked to argue that there should be no research funding, because we who fit the CCC should have all of it. That wastebasket will indisputably contain people very much like all of us - people with a chronic and deibilitating illness that's destroying their lives, with no research and no support from society, who have an unknown physical cause for their illness, and whose symptoms resemble our own symptom pattern so closely that we have been defined together. And we are asked to abandon all those people. We are asked to care so little about
their plight, that indeed we should even focus our hatred on those patients themselves - for being sick with something similar to ME, and for being diagnosed with it. As if those patients don't have enough hostility directed towards them already.
You
cannot ignore, disregard and throw away all the people who have been lumped into the wastebasket together with those who have "true, CCC-style ME". To do so is just some kind of bizarre Stockholm Syndrome behaviour, adopting the language and attitude of the psych lobby oppression and applying it to everyone else who has the condition except for yourself and those who have whatever-you-have. Or perhaps it's like having a bad day at work and coming home and kicking the dog?
It will never fly, this campaign to adopt the CCC, unless it takes into account the broader range of patients and speaks to their reality too. There are millions of us with unexplained medical diseases, and there may just be one disease, or many of them - in the absence of decent research we just don't know. But it's a devastating experience for
all of us, and blaming other patients for the whole situation because their particular disease isn't (in your opinion) true Ramsey-defined ME, or attempting to wash your hands of them and say "well they're not my problem, they have something different" - that's an awful and totally counterproductive approach.
This thread is about trying to actually achieve a consensus regarding CCC ME that is rational and achievable, something we can all support, something we can campaign for together. If the most entrenched and vociferous campaigners for CCC-defined ME can be made to understand that there are other people outside that definition who have severe and disabling physical illnesses that can't just be thrown overboard, then we might be able to start making some real progress together. But while the argument is stuck as it is at present, with a minority of campaigners entrenched in a dogmatic position that takes no account of the concerns of the majority, and frankly admits to not caring about them or even admits to hating them, then I could not be more clear: none of us will
ever get anywhere like that.
