Some, if not many, patients who have been diagnosed with myalgic encephalomyelitis don't want the name combined with CFS. And who can blame them? They believe that they are two separate entities, that ME is primarily neurological and that CFS is primarily a fatiguing disease. They have seen what happened in the UK when the two were merged and don't want that to happen here. The National Alliance for Myalgic Encephalomyelitis was pretty vociferous about that, though I think they may have softened their stance a bit since the discovery of XMRV.
Thank you for explaining some more about this political stance ixchelkali. This issue and this stance has caused me quite some confusion in the past, but these days I am feeling more able to resolve those issues by identifying myself more firmly with "ME" rather than with "CFS". I now describe my illness as ME.
I had previously considered that those patients who are more severely and permanently disabled than myself ought to have the monopoly on the term "ME" because of the greater severity of their condition. When they presented arguments such as the above, I sometimes felt - wrongly - that they were belittling my own serious non-psychological condition because I am in a fair degree of remission.
But since then I have learned what Orthostatic Intolerance is - and that I have it; what a Romberg test is - and that I have 'passed' it; that my personality changes, loss of co-ordination, and memory loss, however intermittent they may be, are neurological symptoms; and that a range of neurological symptoms which I was previously unaware of are indeed characteristic of my own condition. I just hadn't ever seen these experiences as "neurological" before. I understand now that they are. It is in a way a frightening thing to accept.
I hate the name "Chronic Fatigue Syndrome". It is a misnomer, and as its history clearly shows, it is correctly understood as a "slave name". I would love to see that name eradicated. I fully support any campaign to consign the term to the dustbin. It does indeed encourage people to say "Well I get tired too". Everybody thinks they understand tiredness. They don't think anybody else has more right than them to complain about it. It is a massively less significant symptom than persistent immune and neurological abnormalities.
My remaining area of confusion concerns the larger army of people who we perhaps too easily tend to dismiss as "not us", and "maybe suffering from psychological conditions". I am not at all convinced that there really are a horde of people out there who have such a purported vague condition of perpetual fatigue that is distinct from depression and that is also distinct from ME. I continue to suspect that those people who have "CFS" rather than "ME" have either depression, or some other physical illness that may very well be related to ME. Perhaps many of those people are simply able to produce antibodies to XMRV, and thus avoid the most debilitating and persistent consequences.
And it also seems important to note that even depression itself is also a physical illness with a biological basis. Whatever those people may have, I believe it is properly understood, in the modern age, as a physical illness. The concepts of "mental illness" and "psychological" or "psychiatric" conditions, are all stigmatising and misleading, and they all, in practice, tend to locate the problem in the patient's mind and behaviour rather than in physical factors.
I would like to see that whole terminology consigned to the dustbin as well, and I am very concerned that when we discuss these factors, we should be very careful when drawing the line between ourselves and the "genuinely psychiatric" people with depression. In these arguments in the past, I have often - wrongly, I think - interpreted that I myself was being labelled by ME campaigners as suffering from a psychological condition, simply because I saw myself as "CFS" out of respect for the greater severity and persistence of "ME".
So great care is needed when we draw this line. I hope the confusion I have outlined explains why I have in the past noted that "ME/CFS" feels like it draws a line through the middle of our community and separates us from each other, in a reality of "divide and rule". So, so often, the confusion over the different naming conventions causes us to speak to each other at cross purposes.
I don't think I have any easy answers. Until the conditions are all better understood, it does remain complex and potentially arbitrary where we choose to draw the line. But I think there is an overwhelming consensus, amongst those I know personally and have met here, that "chronic fatigue" does not begin to describe us. If there really are people out there who have nothing but persistent fatigue, who lack all the other biological abnormalities, and who are happy to see themselves as "CFS" after learning about all these other factors, then perhaps we should leave the term "CFS" to them, if they want it.
But in that case, then most of us here still need another name, then. And repositioning "CFS" as a different condition to what we all have, if that is now the goal of the psych lobby, does not excuse anybody in the CDC or elsewhere from their responsibility towards the millions of sick people they have neglected. If they have defined us all out of existence, they are still culpable for that. Perhaps, for the Americans, they could all just try to jump ship en masse and call themselves "M.E."? But who knows how that would be politically exploited?
I fear that, whatever we do, the whole thing is just another cynical Catch-22. Can't register what you have: there is no box to tick. Can't research what's wrong with you, because nobody knows what's wrong with you. Can't even get started on investigating this question, because there's no evidence. If there
is evidence, then you belong somewhere else...don't know where though. Can't offer you any support, because I don't know what's wrong with you. Can't offer you any benefit, because I can't prove you aren't just making it up. Can't offer you any more tests, because the official advice is that giving you tests just makes you think there's something wrong with you. Can't understand
this test, because it isn't available under the NHS. Can't see anything wrong with you on
my tests, because they don't include any of your abnormalities. On and on and on...with no progress, no interest, seemingly no concern at this perpetual stalemate.
I have perhaps one positive suggestion which I'm increasingly warming to. Fibromyalgia, Multiple Chemical Sensitivity, Morgellon's, IBS, GWI, Lyme Disease...all these are our brothers and sisters, all are ideopathic conditions, all are serious and debilitating, all are quite likely related, and all should be studied under the same broad heading. We can all still preserve our identities within that broader understanding.
PANDORA, Neuroendocrineimmune disease, the WPI for
Neuro-Immune disease...all these point a way forward. Get together. Campaign together. Join forces. Increase our numbers and demand that we are
all studied properly. Pool all that knowledge, co-operate, build a bigger movement and demand together that serious research begins at long last. Act Up together until we can no longer be ignored, because there are too many of us, and because we are saying loudly and publicly, together, that we have all had enough of being insulted by shrinks and ignored by everybody else.
I still like "WTF?". But almost anything will do right now, for me, that is not the accursed "chronic fatigue".
