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’.

What do Doctors think of ME Chronic Fatigue ?

I thought I would take a chance and write this, prompted by a letter that appeared on the 7th March 2011 in The Times newspaper. This was submitted jointly by the representatives of seven charities and organisations set up for the purpose of supporting patients with myalgic encephalomyelitis (ME). They were expressing concern that the proposed reorganisation of the National Health Service (NHS) would result in the reduction of funds set aside for research into ME and support for those suffering from it. The reason for this was, they stated, that the consortia appointed to decide on funding of resources in the community and in hospitals are to be made up of general practitioners (GPs). One particular concern in this respect was their view that many GPs were sceptical about ME and some did not even accept that it existed.

     Now, I write as a doctor who worked as a GP for 40 years but am now retired. So what I think does not really matter any more, and I can have no influence upon decisions relating to funding for ME or anthing else.

     The first thing I will say is that I believe that the seven signatories of that letter may indeed have had grounds for concern. The chronic fatigue syndrome (CFS) is not a rare presentation in general practice, but it would seem that it may have several possible causes, and the cause in individual cases seems often to be elusive. GPs usually prefer to use the term CFS, as its symptoms have been fairly well defined and to some extent quantified. The diagnosis, then, is usually made on the grounds of what the patient tells the doctor he or she is feeling. Many patients prefer - even insist - that their condition be called ME and that it is more than a condition, it is a disease process with an organic cause. That the cause may not have been identified is only because doctors and medical scientists have not looked hard enough for it for one reason or another.

     Herein lies the problem for doctors. Their training is very much on based on the physical and medical sciences chemistry, anatomy, phsyiology, pathology and what have you. Clinical reasoning and reaching a diagnosis are very much detective work - testing out theories and ideas as scientifically as possible. But while 'myalgic encephalomyelitis' has a quite specific meaning once you translate it from the ancient Greek (pain with inflammation of the brain and nerve tissues) clinical testing fails to demonstrate any such changes consistently in patients complaining of the complex of symptoms. I've read widely about this, and having learned research technique and how to read scientific papers in the course of a MSc degree, I do think I am in a position to make this statement from an informed position. I accept that those who protest the reality of ME will be at pains to point out to me research that claims to prove that they are right. None of it, however, has been validated to an extent that would satisfy me. More importantly, my many friends and colleagues in the pathology laboratories who do all the tests on blood and tissures, affirm that they are unaware of any reliable gold standard test to confirm the presence of this inflammatory conditions in a significant number of people claiming to be suffering from ME.

   I am sorry if this sound prejudiced, but I honestly do not mean to be. I am merely speaking from my world viewpoint - the universe in which I find myself.

     So can you see now why it is that the ME supporters are so often at odds with their doctors? It is perhaps the most difficult, challenging and sad situation, and the greatest of threats to a good doctor/patient relationship, when patient and physician find that they have such a fundamental difference. Patients will be called trouble makers, 'heartsinks' etc. by their doctors, and doctors 'arrogant' and 'uncaring' by their patients. It is just too awful ...

     My own approach was, as always, to listen carefully, quietly and respectfully to what my patient was telling me. I was never in any doubt that theirs suffering was genuine, often severe, and sometimes had a catastrophic effect on their quality of life. I didn't like to hear medical colleagues murmur under their breath 'malinger'. Because I can't think that they really meant it. While the genuine malingerer exists (I have seen one or two - butonly one or two - in my decades as a GP), those patients who came to me with CFS were never malingers. But for the sake of honesty and my own integrity I would point out that I could not just assume a cause for their debilitating symptoms in the absence of any gold-standard test for it.

     I can remember a previous medical correspondent for The Times, Thomas Stuttaford, falling foul of Esther Rantzen on a television documentary on ME. He was rounded upon by the audience when he (foolishly in my view) offered that for the most part they were suffering from depression. For if there is one thing that ME sufferers hate it is the feeling that they are being dismissed by doctors as 'nutcases'. They seem to find it almost insulting that the medical profession should suggest that they are psychiatrically ill. This is unfortunate, and unkind in my view to the legions of unfortunate people who have to live with the terrible reality of depression, obsessive compulsive disorder, post-natal psychoses and shizophrenia.

     In talking to my patients who wanted me to label them as an ME sufferer I used fairly liberally the term 'holistic approach'. It's not one I really like. It has been hijacked and used sometimes inappropriately, and is too fashionable in complementary/alternative medicine circles who would claim that GPs don't have the ability, inclination or time to practise holistically. But good GPs were always holistic in their approach, although traditionally they never described themselves in that way. But I found that folk presenting with disabling fatique and widespread pain seemed put at ease when I talked in that way.

     I accepted them and explained my limitions and a human being and a physician. I assured them of my ongoing support and intention to keep up with developments. I would give them every encouragement. But I would not label them with a disease for which I could find no evidence that they were suffering from. I would not prescribe in a way that was contrary to my scientific knowledge (in order to maintain my integrity) nor would I make referrals to others whose qualitications were inappropriate or suspect. And we - me and my ME patients - were usually fine. A few reacted very negatively and I reminded them that I was only there to give my honest opinion and that if they didn't like it they had that very great advantage - I might say 'privilege' - that so many people in the world do not: the option to see another doctor of their choosing whom they might find more sympathetic to and accomodating of their convictions.