The human and financial cost of ME

Picture of a crab apple tree with a red-brick church building behind it, planted in memory of Lynn Gilderdale. Today (20th Sept 2011) would be her 34th birthday.Last week, the University of Bristol published a study partly funded by Action for ME which highlighted the economic cost of ME and “Chronic Fatigue Syndrome” (more accurately, the cost of illness to service users at NHS ME and chronic fatigue services). The abstract is here and the full study is available as a provisional PDF (a final PDF will be available at a later date) and the authors include the Bristol paediatrician and AYME medical advisor Esther Crawley. The productivity costs of these illnesses were calculated to be £22.3m for men (equivalent to £44,515 per patient) and £26.9m for women (equivalent to £16,130 per patient).

The differential between the male and female economic loss figures is startling: ME is known to affect considerably more females than males, and on average more severely (in particular, while boys and men do get severe ME, almost all the long-term very severe cases are in women). The economic loss partly reflects the gender pay gap, the fact that women may not have been in employment (or at least full-time employment) to begin with, and the fact that some may well have already been severely affected before they became eligible to participate in the study (as it only involved adults), or some other factor unrelated to the severity of their illness. The word “severe” does not occur anywhere in the paper, and it gives the impression that the only participants were those who had attended specialist CFS/ME services in Bristol, Wells (Somerset), Leeds, Epsom (Surrey) and at three hospitals in London (St Helier, Barts and The London); the use of the word attended suggests that those who were physically unable to make it to the centre (let alone those unable to get out of bed) were excluded from the study.

The point is that the financial cost of any illness has not much to do with the true cost to the patient in terms of the burden of sickness or pain or lost life, or even the financial costs of medical and day-to-day personal care. As it appears that severely affected people were excluded from the study yet again, the study could not possibly have estimated the cost of having two people (the sufferer and their carer) being unable to earn a living and still having to afford a house or flat (so, a third person would have been paying for both of their upkeeps and, if they were no longer a family unit, more than one dwelling). One would hope that the same economic cost to a woman than to a man would be understood by statisticians to reflect a greater general personal cost given their lower earnings, but it also goes to show that economic cost of such a thing cannot ever reflect its true personal cost.

The other day someone on Twitter, who has ME, complained that relatives had unexpectedly come to his house expecting to involve him in some sort of “healing” session which involved laying on of hands. He was quite angry about this, partly because he had given up on religion some time ago, but also because people had decided to show up without asking or even telling him. He also said that a Christian healing session of some sort had triggered depression a while ago.

For anyone with a religious commitment who has a friend with ME, or for that matter any illness: you do not need them to be present if you want to pray for them. Just do it where you are. You do not need to “lay on hands”. Your hands probably do not have any particular healing power for them or anyone else. For someone with particular conditions, including severe ME, laying on hands can actually hurt them (this is true of other medical conditions as well, not just neurological ones). You being present in the room may hurt them. Coming to your healing session may cause them increased sickness and pain. You should know that, unless you are a prophet (and if you are alive today, you are not), you do not get to work miracles and certainly you cannot tell anyone with any certainty that your hands will heal them there and then so as to demand that they let you do your healing thing. So, by all means pray for your friend or relative, whether alone or in a gathering; just be considerate to their immediate personal needs, and do not think that your good intentions give you the right to do otherwise.

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