Thursday, 10 March 2011

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.


  1. An interesting post. Could it be that ME - which seems to me often to be diagnosed by a process of elimination - embraces a whole range of illnesses of idiopathic origin?

    Did you ever read Derek Longden's book Diana's Story? Diana (the author's wife) supposedly died from ME. And yet could it really have been ME? Isn't it more likely that she had some other (undiagnosed) condition? I am not underestimating the severity of ME; just questioning the diagnosis. Just as "stress" seems to be an answer given by some doctors when a patient is suffering from something non-specific (this has happened to me), could it not be the same with ME? A friend of ours was recently diagnosed with "stress" (he had been suffering from a chronic headache), and it turned out that he had had a (sub-dural) brain haemorrhage. (He did survive, but only because he insisted on having a scan!)

  2. If doctors would at least show some signs of empathy, I think the CFS/ME population is intelligent enough to know you as doctors can't treat us yet with anything that can resolve our issues completely; however, the look of disgust and disdain in your eyes, the refusal to take cardiac symptoms seriously when we now have the WISE study and work by Paul Cheney and others that suggest a possible heart problem that won't show up on your standard tests, the 5000 studies that have taken place on this illness - we get the jury isn't out yet, but some compassion, empathy and a little bedside manner would go a long way...there are even studies of viruses possibly being the culprit, it is not an easy illness we get that, but we just want to be treated like human one balks at Aids or MS, or RA...and yet years ago, women with MS that were undiagnosed were locked up in mental institutions and given shock treatment...medicine is THEORY, we are not asking for miracles, just some compassion, we are suffering, we wouldn't choose this...most of us were type A personalities before we got struck...imagine what we feel like trapped....this isn't glamorous and in terms of attention seeking? Our families abandon us as do our friends because the establishment refuses to even acknowledge the severity of it, which is why so many of us commit suicide and then your establishment gets to tout: "We were right, they were crazy they've done gone and killed themselves" which is not true...what it already a devastating illness then becomes TRAUMA because of the abuse, invalidation, stonewalling and I'd have to say gaslighting as when someone tells you something is in your head and you are somatizing when you're not...that's what it's called...gaslighting and it's pathological...I am not judging you doctor, but perhaps some other doctor may read this one day and think twice. I have seen so many nasty things said about us in professional forums and yet, your profession takes an oath to do no harm...

  3. Betty Laluna - thank you for your response. I would love to have your reaction to what I said in my personal account, rather than the generalised view on your perception of the medical profession as a whole in the way that they approach ME/CFS. Did you think that what I wrote was unreasonable, inaccurate or unkind?

  4. Dear Author Doc,

    I apologize for it taking some time to get back to you I happened upon your response on a fluke. As I said before, and I will go out on a limb and say that I think most CFS/ME patients could understand that Doctors do not have all the answers, the science isn't there yet; however, there ARE at least 5000 journal articles/studies that verify CFS/ME to be a legitimate disease(syndrome. In my estimation, and of course I defer clarification to you - Medicine will NEVER be 100 percent foulproof simply because it is a science and anything scientific until proven conclusive is HYPOTHESIS. The establishment still does not know the root cause of Cancer. Just recently it has been rumored that the establishment is beginning to view MS as an autoimmune disease rather than neurological - how then do we even begin to explain, rationalize or justify prescribing inteferon (spelling?) Ampligen, steroids and other medications and it may very well turn out the original theory was completely wrong? In terms of AIDS, there are some studies that indicate it may not be HIV that is so deadly but rather in combination with HHV-6 which is oftentimes dismissed as 'pesky' but no one really pays attention to the devastation it can cause perhaps not alone but in combination with other pre-existing conditions...there are many conditions I am sure you would agree are not conclusive but yet they are considered legitimate...we don't tell diabetics they are somatizing thier biological reactions to sugar because of some repressed hostility...could there be a componnent to CFS/ME that is related to stress? I wouldn't necessarily say no but when we look at Trauma, we see on scans actual damage to the brains...that being said, I don't think it irrational to possibly conclude that in SOME cases we may be dealing with depletion of certain chemicals in the body that over time leave one susceptible to something viral...many of us have abnormalities that can be tracked and verified; however, when dealing with a doctor who has a bias, he/she is less likely to dig. The insurance companies also do not help in this arena. Since my last post, the CFSAC has agreed to publish a primer that allegedly will be handed out to every doctor in the US. It is my hope at minimum this will help diminish any bias and create better relationships between Doctors and patients. That alone would at minimum relieve some of the isolation patients feel if only because sometimes a doctor is the only source of validation a patient has. If a doctor does not validate a patient, then friends and family will certainly invalidate and invalidation is damaging and considered a form of abuse especially in this type of situation. Moreover, given the scenarios above where I have cited illnesses that are validated and yet science has not concluded beyond a reasonable doubt the cause...I don't see why ME/CFS should be given short shrift. I acknowledge there are some that do suffer from psychosomatic illnesses; however, even the CDC recognizes that there are 17 million globally suffering from this mysterious malady.

  5. To answer your question more specifically - I don't necessarily find what you shared unkind but I guess a nerve was triggered by the statement above "None of it, however, has been validated to an extent that would satisfy me." That is a valid point because you have a set of ethics and you've been trained to follow a certain protocol I guess it's called? Nonetheless in light of the illnesses I shared above, there really isn't anything conclusive about them either so it seems that there is a bias even IF it is not intentional but rather influenced by the collective opinion. There are some doctors that elect to go a little beyond. We as victims to this illness have turned every stone to keep abreast of studies and latest findings and even armed with that information we are dismissed - and I'm not referring to Joe's blog on Wordpress - I'm citing legitimate studies by respectable institutions. I woudn't say unkind and I understand the challenge a doctor might have as well because an accurate diagnosis is also important for the SAME reasons I outlined above. An inaccurate diagnosis would then result in improper treatment. Currently, they are studying Rituximab as a possible treatment for ME/CFS I don't like that idea much unless I have cancer, and I understand how they will 'market' it as 'low dose' and harmless, but nothing including the water we drink is harmless anymore...I think the key here is to at minimum get to a place where Doctors will acknowledge the seriousness of the illness, and diligently search for answers and if the criteria is met, validate a patient rather than outright dismissing as that in my opinion is a form of harm. In my case, failure to diagnose, failure to put me on leave because they did not believe I was sick cost my my entire career whereas had I been diagnosed and treated and allowed a respite, I might not have spiraled as far down as I did. There are some studies which indicate that sometimes with rest, it may not completely go away but the body has a chance to keep the illness from progressing and remission is a possibility - so it's not just about 'validating' but allowing a patient to try to salvage their ability to earn a living.

    1. My attention has been drawn to your further responses, Betty, for which I thank you. But I am now no longer a giver of health care but a recipient of it. And to an extent at least a victim of the ever shifting priorities of the Health Service and its political masters. But the main point is that I need time to re-read what you have said perhaps many times before I can respond in any meaningful sense. The fact is that I probably won't. For in my retirement I am preoccupied with endeavouring to catch up with all the creative interests I used to enjoy before the demands of my work forced me to set them aside. And time may be short ...

  6. Sending prayers your way...Dr. Henry Tenger all the best...