Syndromes and Such

This is a thorny issue, and not one I thought I would blog about, but given that in excess of 15 million people in the UK suffer from at least one long term health condition (LTC) – and they are just the recorded cases – it is clearly a pertinent subject.

A LTC is in essence any condition which requires treatment over a long period, usually years or even decades.  The term covers everything from HIV/Aids to cancer, schizophrenia to cardiovascular disease.  LTC’s are viewed very differently, dependent on which one you have! There is a definite hierarchy.  The group of non-specific and hard to pinpoint conditions such myalgic encephalomyelitis (ME-unhelpfully once termed yuppie flu), Post Viral Fatigue (PVG) and Fibromyalgia  (FM) are viewed by the general public, and sometimes the medical profession, with suspicion.  A loose collection of symptoms which often include lethargy, lack of energy, generic pain and ‘brain fug’ do not engender much sympathy.  The response is often along the lines of ‘we all get tired’ or ‘we all have pain’ and indeed we do!  What is different about these disorders, and a host of other life-sapping conditions which may be less well known, is both the degree and duration of them.  Often they do not go away, or if they do go away they can come back, sometimes with a vengeance. It may be difficult to pinpoint causes, but the effects can be seen in lost jobs and lost lives.

If you are being treated for heart disease or cancer friends and family can grasp onto something tangible, however terrible the knowledge may be.  There is treatment, support, and very often progress.  With non disease related ‘syndromes’ diagnosis can be difficult and often delayed, and treatment can range from a prescription for non steroidal anti-inflammatory drugs to nothing but short shrift and a flea in the ear!  Science has historically been less interested in the intangible and untreatable than it has with what you can see before your eyes or under a microscope, and what you can cure with a pill or prevent with an injection.  I generalise of course, there are many good practitioners who recognise the symptoms and treat the patient with understanding and give practical tools for management, but this is not as common as it could or should be.  With a stretched NHS and an increasingly sick and ageing population, some degree of prioritisation is probably necessary, I don’t think anyone would fundamentally disagree, but there will always be heated debate about who will get the life-jacket!

This is not a plea for sympathy or prioritisation, but it is perhaps a plea for understanding.  Whilst there is no quick fix potential drug cure for the LTC’s such as the group of syndromes I am referring to, there will be little interest, and therefore little research.  Given that these issue affect predominantly active, productive, working people, of both sexes, this is perhaps somewhat short sighted.  I know people would like to think that these syndromes target the inactive and lazy amongst us, but records just do not bear this out!  Many people are struck down by these syndromes in their youth, when they are at their prime and raring to get on with life; many people are extremely fit and active, and often over busy; they get hit by a virus and never recover their vitality but steadily get weaker and unable to do the things they once did.  Some people are struck down over night for no apparent reason: the life and soul of the party one minute and unable to get out of bed the next.  It is convenient to generalise about, and caricature, a group of people when we don’t understand what the issues are, but it is not helpful.  Many people who have LTC’s of this nature will end up marginalised because they are no longer able to work, and their friends desert them when they can no longer socialise.  Some will end up on benefits, many more will not qualify because the system is weighted against such conditions.

I count myself as one of the lucky ones.  I have supportive friends and family who do not judge me because I have an LTC.  I am fortunate because I can get by working 16 hours a week.  I can manage to pay the bills, and I am well enough to be able to do my job to the best of my ability.  The fact that I need to be in bed by 10pm at the latest, that I sometimes need to rest in the afternoons, that I can’t Hoover my home, or keep the house and garden the way I want it; that I don’t sleep well and am in pain constantly, that I need to budget my energy to be able to do some of the things I want to, doesn’t actually matter that much, because this is part of the self-management of an LTC, and you don’t need to know.  But people who do have LTC’s, whatever they are, do need to know.  They need to be given the tools not only to cope, but to get the best they can from life, in spite of the issues they face.  If general practitioners and the public in general, and friends and families in particular, were more encouraging, then more people would be better supported and better able to cope.  There would potentially be less spend on drugs, hospitalisation, and GP time;  more positive inputs and less isolation would mean better mental health and less spiralling into depressive illness. 

Perhaps the money saved could be used on research.  We have some idea why diabetes and heart disease are on the rise – a large proportion of cases are life-style related.  We already have a preventative strategy which would work for many people, but we don’t know why ME, FM and PVF affects so many previously healthy, active people, and cuts them off in the prime of life.  There are all sorts of theories and suggestions, maybe it’s time for some facts.

The long Term Care Alliance provides helpful information on the management of LTC’s.