What about ME? How much do we fight to the 'death'?

I didn't really want to, I wasn't expecting to, but I'm doing a ME post, due in large to a surprising little surge in media coverage over the last week. Don't just take my word for it:
http://www.bbc.co.uk/news/science-environment-14326514
http://www.meassociation.org.uk/?p=7430

So 'death threats' to researchers has brought up the issue of ME research and the nature of the condition again. I'll try to be as objective as I can.

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Any idea of death threats and abuse in any situation should not be tolerated and is shameful for whoever is making these threats. However, firstly one can perhaps question the genuine nature of these threats, from what evidence I can see, to call these actual 'death threats' seems a bit sensationalist. Although this may be subjective opinion, from what I hear, Dr Wessley does seem to exaggerate issues and to liken meeting M.E. sufferers to being less comfortable to being in Iraq/Afghanistan is both insulting to both sufferers and the bravery our troops. Nonetheless this abuse is unacceptable and actually counter-productive, disuading researchers from a field which struggles to gain the attention it should warrant considering its human and economic impacts.

However, where is this anger coming from? For many sufferers who watch while their quality of life dimishes to the point of sometimes being bed bound, the relative lack of progress in treatment can be very frustrating to say the least. With much research, including the infamous Dr. Wessley, focussed on the illness having a psychologial/psychosocial root. This, especially for sufferers, misunderstood and by no fault of their own, can be seen as somewhat insulting. Not for the outdated stigma for mental illness still unfortunately holds in society, but for the notion that with the right psychological therapy and mental attitude it will heal itself which, besides being simplistic, simply doesn't hold true. To go further it can push an idea "it is all in your head" or "everybody gets tired", an attitude which is insulting but nonetheless held by many in society, a ignorant attitude which still has to be dealt with, one I have had to deal with myself. The ignorance of such attitudes can in someways only be fully understood by those who have to endure the condition.

This not to say there is no psychological element, as how you feel mentally affects how you feel. Therefore psychological 'training' helps with recovery/support, and indeed is beneficial for everyone, ME related or not. However to push a sole line of research and treatment down this line isn't correct. As a good friend once said to me, all illnesses have a psychological and physical element.

Interestingly another neurological illness, MS, which bears many similarites to ME, gets a very different treatment by society and the health profession. From my experience, despite some understandably frustrating moments and days, having ME has probably made me mentally 'stronger', know myself better as a person, and grow up early; despite that physically I've probably got worse over time. Although pyschological elements may have prevented a sharper decline, it highlights that the 'physical/neurological' is the most significant in my opinion, but the nature of condition varies different people so it seems not an 'exact science', this very problem being an issue for 'scientific' reseach.

 Half the problem may lie in that we may be dealing with an umbrella term for a few illnesses rather than a sole one. Chronic fatigue may differ from ME, it may not. But the level of neurological, physical, psychological elements may vary, due to the person and/or perhaps the nature of illness. For some there is a desperation for a definite 'cure' and/or a cause (e.g. viral infection) and this overspills to anger which although understandable, is unhelpful for the health oneself or any research.

However, as much for those, especially in a severe state in the illness, will get frustrated and upset, as we all do, especially when we are at our weakest; obsessing and abusing isn't the right avenue. While looking to recover and have an interest, without wanting to sound insincere or blunt, especially when the condition is more severe for some, maybe it best to try to distract the best one can from it, 'keep calm, carry on' and put hope and faith in those in the scientific field. Without defending some of the misleading research carried out, we have little power and any energy needs to put into hope and making the best out life as we can; whether we have ME or not.