ME/CFS Chronic Fatigue, Fibromyalgia – experiences with GPs

A little over four years ago I had some thought-provoking comments on this blog from an ME/CFS sufferer. My post concerned speculation on ME/CFS from the perspective of the GP. The respondent who commented said: ‘If doctors would at least show some signs of empathy’. And I think that a very important message is contained in those few words. I am quite sure, too, that this plea would be one made by the majority, if not all, sufferers from the condition.

Since I wrote that piece (‘What do doctors think of ME/Chronic fatigue?’ 11^th March 2011) I have moved on. What I mean is, I have moved on four years into my retirement from general practice. And I have become a patient. I am not so unfortunate as to suffer from CFS, but I have experienced similar frustration to that complained of by those who are sufferers when they try in vain to get their GPs to take them seriously.

I am particularly concerned at the changes I have seen in family medicine – changes that were already creeping in during my final years as a GP. The sort of personal life-long care offered by perhaps the majority of GPs when I started in practice over 40 years ago is now a rarity, and actually looks set to die out completely. Doctors are under huge pressure and are highly regulated. I am sure that many who read this will be all too familiar with the consultation where the doctor barely looks at you, and instead taps data into her computer – data that she is obliged to gather for the purposes revealing prescribing patterns, the prevalence and incidence of this disease or that, and for her own appraisal and five yearly revalidation. Hardly a situation that favours the development of empathy as my correspondent so urgently wished for.

You may be of the opinion that GPs don’t know how lucky they are. Well, in that case, why is the NHS experiencing such a haemorrhage of GPS who have been trained at such expense? I am in regular communication with many of them, and a pretty miserable bunch they are, by and large.

I have been on medication for a chronic condition for a number of years now. It is monitored entirely by nurses at my GP practice. None of the doctors there has the faintest idea who I am. Were I to develop new symptoms that might indicate something seriously wrong I would expect to be put through a raft of tests initially, possibly without an in-depth medical history or clinical examination. On attending for follow-up I would probably see a different doctor entirely and perhaps yet another doctor on the next occasion. And were I to question such management I would be ‘reassured’ that this is now standard practice and all the doctors were equally competent. But where is the ‘empathy’?

I would have thought – and please correct me if you think I am wrong – that many of you who are sufferers from ME/CFS will be all too familiar with this. You attend with mystifying and frightening symptoms, and are you listened to? Is your fear and confusion acknowledged? Does the doctor turn away from the monitor and focus his entire attention upon you? Well, I would hope so. But I would bet my boots that this is not the common experience.

And what happens when the raft of blood and other tests all come back negative? What then? Are you dismissed? Or are you referred to a clinic with a two year wait? And if the tests do show something, how can you or how can your doctor know that the abnormality has any relevance at all to the symptoms you are experiencing? Disturbed kidney or thyroid function, or a degree of anaemia showing up does not necessarily have anything to do with the symptoms you initially took to your doctor. OK – so all the focus will go on the results of the tests and the diagnoses that transpire but it doesn’t mean that when these are attended to you will be all bright eyed and bushy tailed again. What it does mean is that the doctor is distracted from your original presentation (perhaps only too pleased to be) and it will be pushed aside.

When I was a GP trainer – supervising young doctors entering general practice – I required all my trainees to justify every test they ordered and to tell me what they were suspecting and what they expected each and every test to reveal. I daresay that if I, as a patient, asked my doctor why she was ordering this test or that I would be regarded as something of a nuisance at best.

No. Too many doctors do not have the time to listen. And I have every sympathy with them. Demand has rocketed, as have expectations. My own view is that this is largely the result of meddling by politicians and misinformation put about by the press.

There is a regrettable tendency, too, for doctors to say or at least to imply that the condition won’t kill you and there is no treatment they can offer for it, so there is no point in coming back. And if there was one, I would say to that ‘then God help you’.