spiked-central | Letter | The ME debate

Please don't discount the idea that mercury poisoning can cause the symptoms of ME (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

Mercury poisoning can also account for why you don't find the same symptoms in everyone who suffers from ME, and why nothing much shows up in blood tests. In the past two years, I've had all mercury amalgam fillings removed from my teeth, and replaced with non-mercury-containing resins. I also had six crowns changed to ceramic non-metal materials, and any remaining amalgam removed from beneath them. So now I'm mercury and other metal free, as far as my teeth go. I also stopped eating fish, as they're known to collect mercury in their systems; and I've been detoxing with various substances, in order to remove the mercury from my brain and other systems and organs. The CFS that I had been experiencing for a number of years is very much improved.

I started experiencing problems many years ago, after having mononucleosis at 25 years of age. I never fully recovered from it. Then they started calling it Epstein-Barr Symdrome, then CFS showed up. No one ever diagnosed my problems - they offered antidepressants and told me to exercise. I tried checking out the psychological approach, but found myself sitting in a psychologist's office, with nothing to tell him that was bothering me all that much. These days, I don't require three days to recuperate from any activity I engage in, and I can make plans to do things on consecutive days. I still have bad days, but I also have good days. And I have hope for the future, which I didn't have before.

Linda S Foster, USA

It's interesting that spiked continues to receive the same sort of response as elsewhere, when ME is treated other than in tones of reverence, as a mysterious physical disease (letters, below; Debating the disease, 14 February; ME: the making of a new disease, 17 January).

The response is an angry and hurt outcry: 'How dare you suggest I am/my friend is/my patients are mentally ill!' Presumably, it's all right for these genuinely sick people to stigmatise the millions with mental disorders, by implying that psychiatric problems are less real and less important than ME.

Guy Herbert, UK

As the husband of a CFS sufferer, it was a relief to find my thoughts on the condition so eloquently argued by Dr Michael Fitzpatrick (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

The suffering caused by CFS is real - and not just for the patient, but for their family and friends also. There is (or certainly ought to be) no shame in suffering from a mental illness. The physical symptoms of CFS are real, but this doesn't mean that the cause has to be physiological.

I am frustrated that CFS sufferers are so resistant to the idea that the condition may be psychosomatic, when such a realisation may well hasten their recovery. To suffer a psychosomatic illness does not mean that one has 'asked for it', or that one is making it up. Honest, thick-skinned debate about CFS is overdue, and can only help.

Name and country withheld

Dr Michael Fitzpatrick is wrong to dismiss ME so readily (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

There is a wealth of data from patients and professionals which shows that sufferers invariably show haematology, and other detectable physical signs that there is some physical illness in progress. Dr Fitzpatrick is also wrong to suggest that the 'Royal Free Disease' of the 1950s can be dismissed as 'hysteria'.

John Phillip Heptonstall, UK

I'm rather new to the ME scene, having apparently concocted and inflicted upon myself this intermittently debilitating non-illness about a year ago (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

I would have loved to have someone in authority offer me some counselling and create a programme of rest/activity to speed me on the way to recovery. I had to do that all by myself, but at least I had a diagnosis. I took the advice that no one would do anything for me, so I had to find out all I could from fellow sufferers and help myself. I now know how the illness manifests itself and, with careful management and a good mental approach, I am slowly recovering from whatever it is.

The problem with not having a proper name or diagnosis, Dr Fitzpatrick (which is surely the fault of you the doctor, not me the patient), is that you can't get any treatment or benefits or care. Whether this malaise is physiological or psychological or a combination of both, you really need treatment, benefits and care.

D Danks, UK

Why didn't Dr Michael Fitzpatrick read the Lancet editorial, written jointly by Action for ME and other eminent professionals including Professor Simon Wessely, in which we stated jointly that 'we agree that ideologies both within and without the health professions have not served patients well in the past, and that both doctors and the patient charities need continued humility in this uncertain area'? (Debating the disease, 14 February; ME: the making of a new disease, 17 January)

No one, least of all us, is asking for GPs to carry out a course of action as instructed by the patient. However, where there is uncertainty patients need to be partners in any treatment regime. Not an unreasonable point, surely?

Brian Dow, UK

Dr Michael Fitzpatrick tars with the brush 'activist' anyone - individual or organisation - who writes about ME, as though all are bitter, angry, militants (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

The truth is that they are the small percentage who are well enough and able to represent the whole population of ME sufferers, when you consider that 25% are bed- or housebound, some 30,000 or so are children, and the other half of the 150,000 UK total may feel too ill, insufficiently articulate, shy, otherwise unable, or have given up after repeatedly having had their efforts rejected or sneered at.

Dr John H Greensmith, UK

Dr Michael Fitzpatrick has dug himself deeper into the mess he got himself into with his first article on ME (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

The veneer of reconciliation which can barely paper over a resentment that sees him still branding sufferers, and clinicians who would disagree with him, as 'irrational'. That's pretty strong.

Fitzpatrick refutes some simplistic interpretations of his stance, but none can adequately address the damaging consequences of denial of urgently needed medical interventions for people with widespread symptomatic pathophysiologies, nor admittance to appropriate services such as social department care, or welfare benefits, for those who meet the criteria for them. This is naturally the practical consequence of continued causal attribution.

Dr Fitzpatrick tends to forget this is not a matter of doctors versus patients. Doctors can only exist as long as there are patients. A diagnosis or 'treatment plan' for ME/CFS only occurs after a patient has had the good faith and trust to go to you, and not because you have created or own (or disown) their condition nor their identity and personality.

Michael Neillands, UK

Michael Fitzpatrick's robust intervention in the ME debate is a welcome change from the usual see-saw of assertion v denial that the illness exists (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

Not only is there no consistent evidence of irretrievable physiological malfunction in every ME case - unlike every other incurable pathological illness - but ME is, as far as I know, unique in being a disease that basically consists of the inability to get better. All of its symptoms are the same as those suffered, in various combinations and to varying degrees, by the rest of us whenever we get viral infections, hormonal imbalance, or just worn out by life's vicissitudes. The only defining characteristic unique to ME is failure to recover. And it is this failure that has no demonstrable physiological reason at all.

It is an extremely 'obstinate' condition - as frustrating to its sufferers (and far more depressing) as it is to its would-be physicians. Fitzpatrick's list of conditions with no physical-cause explanation which have turned out to be caused by other factors oddly omits 'female hysteria', which generations of women were confidently known to be afflicted by - until we finally found confidence to value our own definitions of a life worth living, and the collective social power to change external reality to meet our real needs better. All those Victorian women who took to their beds and smelling salts did so because they just couldn't bear the lives they were expected to lead.

There is nothing patronising or inhumane about questioning a line of investigation. All that Dr Fitzpatrick is suggesting is that a) if you can't find the remedy by addressing the symptoms, then it's reasonable to look for clues by examining the cause, and b) the reason we haven't found a 'common physical cause' is possibly because there isn't one - maybe the cause is on a different level. I say to ME patients: you (absolutely correctly) asked to be taken seriously, and society has done so. Now face the serious scrutiny, and let's find out what is making and keeping you ill.

Viki Junor, UK

I don't much care what you call what ails me, I just wish I was well again (Debating the disease, 14 February; ME: the making of a new disease, 17 January).

Meanwhile I try to ignore my illness, although it's hard to ignore frequent exhaustion, muscle weakness and strangely erratic digestive and respiratory problems. I absolutely refuse to be defined by it and I'm glad to be alive, after successful treatment for cancer.

As a local contact for the ME Association, I used to come across people who almost certainly did suffer from 'self-pity and self-delusion', and quite a few who were totally preoccupied with their ill health. Some spent a small fortune on quack remedies and treatments - there are plenty on offer. As long as the illness, whatever it is, isn't clearly defined and diagnosed, there will always be self-diagnosed neurotics to exploit the situation. But I've also come across many people who could not be described as self-pitying or delusional, who struggle to live as positively as they can amid all the confusion and scepticism, whose lives have been significantly damaged by what I call 'TBD' - This Bloody Disease.

If I believed in the supernatural, I'd love to be able to cast a spell so that Dr Fitzpatrick and his kind could experience what I have, every day, for the last 16 years. My own GP doesn't need a spell - he's witnessed the effect of TBD on a close family friend, and is convinced that it's a medical condition.

Margaret Nelson, UK

I think Dr Michael Fitzpatrick raises some valid points, such as the inadequate CFS/ME synergy (ME: the making of a new disease, 17 January). But I don't think he understands what it is like to have to live with an 'unexplained illness'. He attributes idealism to the biomedical model proponents, when the idealism is on the other foot.

He is right that it is foolish to attempt to separate the biomedical from the biopsychosocial. Of course, all are related. But it is naive to think that modern society understands and embraces mental illness (not that CFS is one), understands living with chronic illness, or that it has moved on from dualistic mind/body distinctions. Groups representing people with CFS have no alternative but to lobby for a biomedical understanding of the illness to be included. This is because proponents of the biopschosocial model assume we have moved past this dualism.

It is unfortunate, but when CBT and GET are recommended for treatments, the media and the general public conclude that CFS is 'all in our head.' If only the biopsychosocial lobby were clearer when reporting on the condition, the debate would not get polarised. Patient groups take the position they do because they are at the coal face. They see what people's real attitude is to CFS, and how CBT and GET affect them.

I believe the idealism is all at the feet of the biopsychosocial proponents - they are divorced from and indifferent to the impact their comments have on the levels of understanding and care the average person with this condition will receive. They are complicit in allowing social stigmas and stereotypes about the condition to be reinforced. Perhaps the only way these people will 'get a heart' is if their kids get the disease. They may then get off their ideological high horses and start to think of the patients, as well as their funding.

Paul Leverenz, president, ME/CFS Society, Australia

The real question behind this article is: how on earth did Michael Fitzpatrick get to be a doctor? (ME: the making of a new disease, 17 January) It is terrifying to see such an ignorant and arrogant man in a position to do great harm to others. People like me.

I have direct experience of what he is talking about. I have been a ME group leader in two different parts of the world. The only people who fit the bill that he describes is people with depression who want to believe that they have ME. His statements do not ring true when compared to the experience of a real PWME, such as myself. It is sad to see you give publicity to these lies.

Annette Barclay, UK

I'm reminded of the Chris Morris sketch featuring patients suffering from symptomless coma (ME: the making of a new disease, 17 January). That is, there is another side to the coin. For many people a diagnosis seems to be a godsend, giving comfort and therapeutic benefit, but to be given a diagnosis that you don't want is hellish. How do you go about disproving that you have a condition?

As it happens, I have a lot of sympathy for people who are sick and tired and don't want to go to work. In these circumstances, a medical diagnosis is no doubt of great use. This seems to me a sane and rational response to some of the mind-numbing jobs that some people have to do.

Mark Tyson, UK

I read this article with great sadness (ME: the making of a new disease, 17 January). As a clinician who treats CFS/ME patients on a daily basis, this type of distorted and one-sided article is not only offensive to sufferers, but completely ignores the huge amount of evidence that this is a real disease with identifiable and consistent pathological abnormalities.

Doctors who support the psychiatric model never address the science showing organic pathology. Indeed, it is my experience that they do not know about such evidence. Medical history is awash with illnesses which have been termed psychological/psychiatric until science has advanced far enough to understand the true nature of the condition. CFS/ME is one of these.

I unfortunately see patients whose lives are not only ruined by this devastating lifelong illness, but who also have to put up with this sort of attitude, which has meant that they are now certainly the most neglected group of patients suffering from a chronic illness.

Dr Andrew Wright GP, National Medical Advisor, Action for ME, UK

This is ridiculous (ME: the making of a new disease, 17 January). Medical authority is not surrendering to anything. Is there another situation anywhere in history where patients have 'talked' doctors into 'believing' anything? Or where doctors have kow-towed to patient groups in fear of offending them?

Substitute MS and hysterical paralysis for ME and CFS in your commentary. Maybe you'll start to understand.

Deborah L Sherman, USA

I have spent several years researching the medical history of the syndromes about which Dr Fitzpatrick writes (ME: the making of a new disease, 17 January).

The main reason why large numbers of people started going to doctors with ME in 1980s is that ME was the most widely known name for these symptoms in UK at that time. But large numbers of middle-class women (and others) have been going to doctors with similar vague and variable symptoms since the 1870s, when they were first called neurasthenia, which by 1900 was one of the most common disorders in medicine.

These 'medically unexplained' symptoms, by definition, defy medical understanding. They also pose a great challenge for rational classification and nomenclature. Over 70 other names have been proposed for the same symptoms in the last 150 years, although few of their proponents have recognised (or wanted) any connection with their predecessors, each preferring to claim that they had discovered a 'new' disease rather than just reclassified an old one.

From neurasthenia to present, most of these names were originally presumed by their promoters to be physical disorders - it was only the persistent failure to identify any consistent objective abnormalities or biomarkers that led mainstream medicine to eventually dismiss them as psychiatric 'fad diagnoses'. The relatively few doctors who thought from the start that they had discovered a new psychiatric syndrome were either psychiatrists or connected to the US or UK military - which didn't want to acknowledge any physical cause of illness on the battlefield, so it blamed the soldier's mental and physical status instead.

Many civilian screening studies over the last few decades have noted that approximately 25% to 30% of all patients presenting to their GPs have similar unexplainable symptoms, for which most doctors do nothing but reassure or ridicule their patients with perfunctory platitudes and placating placebos, preaching patience, peace of mind and - of course - prompt payment. But let us give the thousands of doctors who have recognised this syndrome in the last 150 years (by one name or another) a little credit. They at least have done more to maintain medical interest and research in the disorder than those who deny it even exists beyond the imagination of patients, their advocates and the media.

Albert Donnay, USA

It is a novel idea to think of bedridden, seriously ill and disabled people as powerful activists but I must assume I am one of them (ME: the making of a new disease, 17 January).

ME/CFS is an umbrella term for a spectrum of illnesses. Patients included in this wide ranging diagnosis range from people who are tired all the time, to severely ill and chronically disabled patients who remain bedridden for years.

Until research finds out what all the different illnesses are that the medical profession has decided to lump together as CFS/ME, desperately ill patients will remain sick, trivialised and vulnerable to psychiatrists who can take away their dignity, benefits, and even their children.

Hayley Klinger, UK

An interesting comment on the chief medical officer's report (ME: the making of a new disease, 17 January).

While I don't agree with all of it, it does illustrate the damage that activists and so-called support organisations do to the cause of people with this very real and serious illness. Whatever the cause and nature of CFS/ME, it is better to know the truth and use it to get better. Activists reject the idea that a management programme of any kind is likely to work.

I write as a parent of a boy who, thankfully, recovered from CFS/ME - with the aid of treatment that matches the biopsychosocial model rather than the biomedical one.

Denis Scadeng, UK

Has Dr Michael Fitzpatrick ever met an ME patient, or ever talked to one? (ME: the making of a new disease, 17 January)

He seems to think that ME provides a wonderful excuse to escape from the harsh realities of engaging in working life, and that as ME patients, we enjoy being dependent on our fellow citizens for our survival. I can absolutely assure him that it is not a matter of personal choice to have ME, and I have spent thousands of dollars and every ounce of energy at my disposal to try and find a way out of the ME trap, as has everyone I know with ME.

I think I might respond better to helpful solutions or to a genuine effort to ameliorate my condition, but to be castigated as delusional, and to be told that I could in effect 'wake up and smell the coffee' and all would be well, really does little to enhance my sense of wellbeing.

Martin Stuart Buck, Nigeria

This article makes a very good point about the psychological nature of illness (ME: the making of a new disease, 17 January).

The obvious intervention is some form of therapy/coaching, whatever you want to call it. But spiked is usually scathing in its opinion of therapists, so where does that leave us? This inconsistency in spiked articles spoils some otherwise highly intelligent comment.

Kevin Marsdon, UK

Dr Michael Fitzpatrick is low on facts and high on vitriol (ME: the making of a new disease, 17 January).

He overlooks the fact that over the past 15 years, scientists have discovered many biological abnormalities that provide evidence for the reality and seriousness of ME/CFS. In particular, they have uncovered evidence that the illness involves both the brain and the immune system.

Specific findings include: increased numbers of CD8+ activated 'cytotoxic' T-cells (cells commonly increased when the body is fighting viral infections); low natural killer cell function; an abnormal, low molecular weight protein in an antiviral pathway called the RNase-L pathway; and a reduction in cerebral blood flow on SPECT scans. Face the facts, Dr Fitzpatrick, face the facts.

Ian Barnes, Australia

I have been bedridden for the past 15 years, after eating some raw oysters and drinking a few margaritas at a local pub. I had been a hard working BMW sales manager making a six-figure income, and was, overnight, consumed with a polio-like weakness and a burning in my spine that has never abated. I was diagnosed with CFS/ME, and have spent the past decade researching more than 100,000 pages of medical articles that have shown more heat than light (ME: the making of a new disease, 17 January).

Dr Fitzpatrick's diatribe against some of the sickest people on the planet is inexcusable. The US Department of Defense has just set aside $6.6billion for more than 100,000 sick Gulf War veterans who are ill with Fibromyalgia Syndrome (FMS) and ME/CFS. I have lost more than 22 friends and colleagues to painful deaths from ME/CFS.

History is replete with medical mistakes, and Fitzpatrick is perpetuating a fraud upon society. The philosopher Arthur Schopenhauer said: 'All truth goes through three stages. First it is ridiculed. Then it is violently opposed. Finally, it is accepted as self-evident.' Just because ME/CFS has not been able to be deciphered by ignorant physicians, doesn't mean that it doesn't exist.

Thomas Michaels Hennessy Jr, USA

As someone who never went to university, doesn't read the Guardian and has no decent qualifications to speak of, I probably don't fit Dr Fitzpatrick's stereotype (ME: the making of a new disease, 17 January). But amazingly enough, I do have a piece of paper from a psychiatrist that gives me a clean bill of mental health despite being given the diagnosis of CFS/ME.

The reason why so little physiological evidence has been found is because what money there has been has gone into psychiatric research. I look forward to the day when I will be able to read articles like this and laugh.

Gus Ryan, UK

Dr Fitzpatrick demonstrates in this article that he is a prime example of the type of medic which the chief medical officer's report suggests should have further training (ME: the making of a new disease, 17 January).

Has he heard of the ICD-10 codes? He speaks eloquently and exclusively of the F48.0 group of illnesses with 'fatigue' as a symptom, but has shown total amnesia - or worse, ignorance - about the illness under G93.3.

That's where the neurological illness ME belongs, and the fact Fitzpatrick fails to recognise it is reason for more trusted and qualified doctors to take a lead here. ME certainly exists, and is recognised and diagnosed by neurologists. It is often mistaken for MS, as symptoms are almost identical. 'Fatigue' is not even a major symptom of ME, no more than it would be for any other debilitating illness - it is doctors themselves who created this confusion through sloppy diagnosing. Now we, as sufferers of the neurological ME, need this mess cleaned up once and for all so that we get the treatment and care we deserve.

Laura Jones, UK

It is lamentable that 'Disregard Syndrome' has become so prevalent when evaluating medical research (ME: the making of a new disease, 17 January). Dr Fitzpatrick is perhaps unaware that ME is not a new disease, and that there have been at least 63 recorded epidemics dating back to 1934. But perhaps this is to be expected from someone who cites English professors as medical authorities.

Jean Linn, USA

Dr Fitzpatrick skates on thin ice when he uses history to back up his arguments (ME: the making of a new disease, 17 January). And given the current iatrogenic statistics, he skates on even thinner ice when he portrays himself as an expert on ME. Typically, he ignores laboratory findings of physical abnormalities, while promoting fallacious arguments and supporting the opinions of others who made an attempt to change the WHO categorisation of ME, by stealth.

The description of 'yuppie flu' is correct, although I get the feeling that Dr Fitzpatrick is not in accord with it. Perhaps that is because he is in favour of that other pejorative sobriquet, Chronic Fatigue Syndrome (CFS). Professor Simon Wessely has moved on from the typical middle-class professional to the lower socio-economic, poorly-educated classes whom he now claims are most often affected by ME and Gulf War Syndrome. Having tried and failed with the (largely female) middle class, Wessely may have felt it easier with this new 'predisposed' group, to persuade society that such conditions are synonymous with stupidity. He does not seem to realise that the broken leg of the illiterate is no less broken than the broken leg of the genius.

We are warned - nay, threatened - by Wessely that if we don't 'play nice', we 'would hasten the disengagement of some healthcare professionals who have been active and involved in CFS clinical care and research for many years'. I can hear the cheering echo, not just around the UK but around the world. My overall impression of Fitzpatrick's article was of a few remaining rats on the deck of a sinking ship, baring their teeth in defiance at the inevitable end.

Gurli H Bagnall, New Zealand