Extracts from It's All in Your Head: True Stories of Imaginary Illness 4 Jun 2015by Suzanne O'Sullivan

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Over-attentiveness, particularly when achild is sick, can also serve as a risk factor for unexplainedmedical illness later in life. Attitudes to illness and health canbe in part learned through experience. Chronic illness, eitherin a child or in a member of their family, can modulate howthey manage illness and respond to stress in the future. Earlyexposure to chronic ill health can inadvertently encourage illnessbehaviour and, as we have seen, shape how psychosomatic illnesspresents, with patients often suffering from symptoms they havecome across before in others.

Behavioural factors may also be important in the developmentof chronic pain and chronic fatigue syndromes. Disorders likeME and irritable bowel syndrome may not have their originsprimarily in stress but instead in mistaken beliefs about howbest to respond to changes in your body and illness. Thetendency to respond to every bodily sensation, rather thanignore most of them as the majority of us do, may be learnedat a very young age.

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RACHEL

Some psychosomatic disorders are extreme and rare. Others areso common that even if you are nor personally affected youprobably know several people who are, although many of thosepeople will of course hotly contest any suggestion of a stress-related cause. Psychosomatic symptoms are by their very natureevidence of denial. When a symptom cannot be measured, thatcreates an ideal opportunity for denial to ourish.

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But where the tiredness has reached the point of adisability, rest often fails to give relief. That is how it is forsufferers of chronic fatigue syndrome.

People in the waiting room moved back as Rachel wheeledherself slowly past them to get to the door of the room whereI stood waiting for her. Chairs faced one another in rows andthe space between them was narrow. Seated people turned theirlegs to the side and pulled their children up on to their laps asthe wheelchair travelled forward. A man and a woman who I

took to be Rachels parents were walking behind her. I movedto help but the woman stopped me.

She has to do things for herself.

I could only stand and watch, then, as Rachel labouredforward. Once settled in the room, her parents seated on eitherside, Rachel asked for a moment to compose herself. Even beforea word had been exchanged I felt that a point had been made.

[...]

At the age of twelve she enrolled in an acting class. Oneday a casting director came to her class looking for a child totake the lead role in a television advert. Rachel got the job. Itmade her a minor celebrity at her school for a term. At the ageof fourteen she left mainstream education and transferred toan academy for the performing arts.

[...]

Rachels mother researched her daughters symptoms on theInternet. She came across several accounts of young people whohad suffered in a very similar way to Rachel. She had heard ofmyalgic encephalomyelitis before but she had not realised untilthat moment that the symptoms tted so perfectly with thoseof her daughter. Rachel had ME, she was certain of it. A websitefor ME sufferers gave a list of recommended doctors and Rachelsmother rang one of those listed and arranged for Rachel to seehim.

[...] When he heard this the doctor was certain thathe had the answer: Rachel suffered from Lyme disease, contractedwhile on holiday.

[...]

Her parents took her to another rheumatologist. He did notagree with the diagnosis of Lyme disease and told her that hethought she was depressed.

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Unable to continue paying for private treatment they askedtheir doctor to refer her to another rheumatologist on the NHS.Over the next six months Rachel saw two rheumatologists, animmunologist and another neurologist. She was again told byone that she was depressed. Another said she had bromyalgiaand prescribed painkillers and an antidepressant.

Is that the only treatment you doctors have heard of ? herfather asked rhetorically as the family recounted the story.

When Rachel nally agreed to an assessment by a psycholo-gist the report came back saying that, if the test result was tobe believed, she had the mental capacity of a six-year-old.

They mean you didnt even try, the doctor who had orderedthe test told her.

If you think thats bad, Rachel said, one doctor told me allI needed was a holiday. Or a boyfriend!

Her parents turned to the Internet again for help and foundthe name of another doctor who ran a specialist clinic for MEsufferers.

[...]

Leaving that clinic that day I felt better than Id felt all year.He really meant to help me, I could feel it, Rachel said. Hefooled me.

He fooled us all, sweetheart, said Rachels mother as shetook Rachels hand in her own.

[...]

The following day she had a meeting with her doctor andher rst question was why she was on a psychiatry ward.

This is a psychiatry-led service, Rachel. I thought you knewthat.

Are you a psychiatrist?

Yes, I am.

You should have told me.

Im sorry, I assumed you were aware of that when we met.Maybe it would help if I told you that this is a specialist servicefor people who have ME. It is not intended as a primarilypsychiatric intervention. It is a programme to treat the physicaldisabilities caused by ME.

Im not insane.

Nobody here thinks you are.

Rachel was just about persuaded to stay.

The next day Rachel tried her hardest to engage in the treat-ment that was scheduled for her. She saw the physiotherapistwho did a detailed assessment and gave her a programme ofgraded exercise. She was also seen by an occupational therapistwho asked her about her plans for the future.

If we could put this illness behind you what would you do?

Id be me again. Rachel the dancer, not Rachel the wheelchair-bound cripple.

And if it takes a while to get there and we can only hope tomeet small goals, one at a time, building upwards - what then?

Id like to be able to walk from my bedroom to the bathroomwithout feeling drained.

Okay, lets start there.

Rachel also had a reluctant meeting with a psychologist. Shehad not fully recovered from the results of the last psychologistreport. She was relieved to find that this psychologist wasdifferent. She didnt bombard her with questions but listenedwhile Rachel talked.

When Rachels mother phoned her that evening she feltrelieved to hear her daughter sounding optimistic. The nextnights phone call was not so positive. On the rst day of herexercise programme Rachel had fallen out with the physiother-apist. Having agreed to at least try the exercises, Rachel foundshe just couldnt do it.

She kept saying, you can do it, dont give up, keep going, asif I wasnt doing the exercise by choice. I just didnt have thestrength and she just wouldnt listen.

Rachel managed four days in the unit. On the fth day shewas sitting in the shared lounge when another patient becameacutely distressed. She crouched in the corner and startedscreaming following a disagreement with a member of staff.Rachel rang her mother that evening and asked to be collected.The consultant was called to see her before she went home.

He thought he could talk me into staying. Whats the policyof this unit anyway, I said to him, bully people better? I shouldnever have been admitted to that ward.

It was now one year later and as I listened to Rachels storyI felt sympathy for how difficult her life had been and howlittle progress she had made, but at the same time I wonderedwhat she hoped I would do differently. With this thought inmy mind I asked Rachel if she could transfer from her wheel-

chair to the couch to be examined.

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I wondered if it was possible that Rachel needed me to shareher experience of the impossible task I had set her. Perhaps shefelt she had not convinced me yet. I reminded myself thatexaggerating to convince is not the same as exaggerating to fool.

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No, she rmly. Have you even been listening? I donthave chronic fatigue syndrome, I have ME. Fatigue is somethingthat everybody gets. The word is an insult. Fatigue happens ifyou go to bed late or exercise too much. You rest and then youfeel better. Im not tired. What I feel is nothing like fatigue. Ifeel like somebody has literally drained all the life out of me.Death would be an improvement compared to how I feel. I donot have chronic fatigue syndrome, I have ME!

ME, youre right, Im sorry.

Cant you see how bad things are for me? she said.

For everything she had told me and all she had done toconvince me, I had left Rachel feeling that she had not doneenough.

I guarantee you, Rachel, that I am in no doubt about howbad things are for you. What Im not certain about is how I canhelp you. I have looked through your test results and listened towhat has happened to you and I agree with the diagnosis of ME.Im not convinced that any more tests will make a difference.

I dont want any more tests. I want treatment. I have heardthat interferons used to treat people with multiple sclerosis canhelp people with ME. I want you to prescribe them for me.

Im really sorry, Rachel, but the treatment you are talkingabout is very dangerous and it isnt licensed for use in ME.There is no way that I can put you forward for it.

[...]

Rachel thinks I have access to a treatment but I am with-holding it. Or that she is a victim of a health service that isshort of funds. But it is not a question of money or whatthe NHS can or cannot provide. A quarter of a million peoplein the UK and at least 2 million people in the States haveME (or chronic fatigue syndrome, as it is also known). To acertain degree each of those people will be at the mercy ofthe doctor they see; some will be dismissed, some will undergo

inappropriate investigations, some will be prescribed antide-pressant drugs and others will be referred for alternativetherapies. It is possible that those seen by private doctors oralternative medical practitioners, in any country, might ndthemselves more likely to be offered unnecessary tests andunproven therapies. On his website one private doctor makesthe uninterpretable claim that he treats ME by altering thepatients biological terrain, others offer magnesium injectionsor vitamin supplements. These are placebos at best, orevidence of proteering at worst. But beyond the variationsin practice of individual doctors there is no difference in thetreatment of ME between developed countries. and Rachelwill nor be prescribed immune-modulating therapies nomatter where she goes.

Having said that. sometimes patients persuade doctors to dothings that are against their best judgement. I may not be ableto make Rachel better. but I could possibly protect her fromthe danger of other inappropriate treatments and investigations.But Rachel had strong views about her illness and about howshe wanted to proceed and they were hard to counter.

Do you even believe that there are serious immune problemsin people who suffer with ME?' she asked.

I believe that ME is a serious disabling illness that nobodyhas yet fully explained.'

Thats a no Rachel's father said and turned to her. "We'rewasting our time once again"

Rachels mother let out a gasping sob that spoke for everybodyin the room. We all felt the despair of a difcult road withnothing worthwhile to reward us at the end. Rachel was climbinga hill and every time she thought she had made it to the topshe discovered she had not.

I worried Rachel would never reach her destination because that place does not exist.

People have searched for it for centuries.

Chronic fatigue syndrome (CFS) has been subject to manyexplanations and has been given many different names. Itsnineteenth-century ancestor was called neurasthenia.Neurasthenia was a syndrome with a long list of symptoms,many of which are very familiar; chronic fatigue, nerve pain,joint pain, depression, difculty sleeping, anxiety, impotence,headache. A very particular feature was that the sufferers werenot refreshed by sleep although many slept for most of everyday. Patients exhibited a very extreme form of exhaustionalthough no physical weakness could be found in the limbs to

explain it. The fullest early descriptions of the condition weregiven in 1869 by George Beard, a prominent American physi-cian. Beard championed neurasthenia as an organic disease,imagining some depletion of resources in the peripheral nervesor brain as a result of overuse. Neurasthenia struck down thesuccessful and the intellectual almost as if they had quite liter-ally exhausted the nervous system through excessive use of theirhigher faculties. It was a modern illness attributable to the fastpace of life in the latter half of the nineteenth century. Herewas an illness that victimised the elite.

Neurasthenia had much in common with hysteria. Both weredened by medically unexplained symptoms that led to disabilitybut not to death. They came with no objective evidence fordisease. But neurasthenia also had one feature all its own. Whereashysteria was viewed, rightly or wrongly, as an illness mostly ofwomen, neurasthenia was an illness that predominantly, althoughnot exclusively, affected men. And nerve exhaustion would provemore robust than its sister hysteria. When the doctors in Europewho had championed hysteria began to disappear, neurastheniagrasped the opportunity to take over the world. By the earlytwentieth century neurasthenia had become the maladie a lamode in Paris, while in Harley Street it became one of the mostfrequently offered diagnoses.

With this new diagnosis came the possibility of new treat-ments. The most famous, or infamous, treatment was the WeirMitchell rest cure. Developed by a neurologist based inPhiladelphia, it subjected the neurasthenia sufferer to an unnat-ural sort of rest, in which they could not move, read, have aconversation, nor be subjected to stimulation of any kind.Patients were not allowed to stand and had to use the bedpanlying down. Extreme rest was combined with force-feeding withfatty foods and took place continuously over months. Manydoctors made their fortune from this sort of cure.In time, however, neurasthenia would follow the trajectoryof Charcots hysteria. As more became understood about thephysiology of the nervous system the idea of a nite energysource depleted by overuse was no longer viable. It also becameobvious that the Weir Mitchell rest cure was as ineffective as itwas costly. But the thing that cast neurasthenia most ferventlyin a new light was the dawning realisation that members of thelower orders, and even women, were just as likely to be affectedas were rich and successful men. This flew in the face of allthat was understood about nerve exhaustion reportedly broughton by excessive use of a superior intellect. The neurologists whohad fought so hard for possession of the illness soon abandonedit with just as much fervour. Once the label had been rejectedby the rich and successful. it was rejected by all society.

Neurasthenia became less prominent as a diagnosis althoughit did not disappear completely until at least the second half

of the twentieth century. It Still lurked in neurologists ofces,sometimes offered as an organic disease and other times as apolite alternative to depression. Fatigue did not disappear, ofcourse, it was just reclassified. Some neurasthenic patients gainedthe label of melancholics, others had their symptoms attributedto infections or use of chemicals or one of a host of differentphysical complaints.

By the mid twentieth century the concept of a syndromedened by fatigue had faded from doctors arsenal of diagnoses.It would take a series of seemingly unrelated events occurringin different parts of the world to see chronic fatigue re-emergewith all the old controversies intact.

In 1955 in north London a mystery illness swept throughthe patients at the Royal Free Hospital. Soon the illness spreadto the nurses and doctors. Over 200 people were struck downand the hospital was forced to close for two months. Patientspresented with a flu-like illness followed by muscle aches, tired-ness, headaches and memory lapses. The clinical features of theillness suggested to doctors that their patients were sufferingfrom some unexplained inammation of the brain and nerves.The term myalgic encephalomyelitis was applied. No cause wasidentified and no one died. This outbreak was the origin of thelabel ME.

Following on from this epidemic similar began toappear individually or in smaller numbers elsewhere. Scientistsinvestigated a variety of different viruses and other organismsin an attempt to find an explanation. Every now and then, overmany years, in an explosion of excitement, a new cause wasfound. Each was quickly disproved.

Then, in Incline Village, Nevada, in 1984, the Centre forDisease Control was called as 120 people out of a populationof 6,000 fell ill with a mystery disease. No two patients wereidentical. Each had their own mix of symptoms, many includeddizziness, numbness, aching joints, tiredness. At rst there wasno explanation, but then, after exhaustive tests, it was discoveredthat a large percentage had antibodies in their blood thatsuggested exposure to Epstein-Barr virus (EBV). A link hadbeen created between chronic fatigue and EBV that would lastto the present day. The fact that the majority of most adultpopulations do not suffer chronic fatigue but will have beenexposed to EBV at some point in their lives, and therefore willalso carry an antibody to the virus, did not deflate the enthu-siastic investigators in the least.

The 1980s was the era in which chronic fatigue becamechronic fatigue syndrome. A veritable outbreak occurred.Newspapers and television shows blossomed with evocativestories about the disease that doctors didnt understand. People

who had suffered for years found an explanation, if not a solu-tion. And the old neurasthenia debate began in earnest onceagain: was it even a real illness?

Chronic fatigue syndrome is dened in the simplest terms asan overwhelming fatigue that has been present for at least sixmonths, is disabling, and where there is no psychiatric illnessor other physical disease to explain it. ME is synonymous withchronic fatigue syndrome, and is the term favoured by somesufferers, particularly in the UK. To include ME/CFS in a bookprimarily concerned with the description of those suffering withpsychosomatic illness is foolhardy to say the least. A erce argu-ment has raged for decades between those who consider thisto be a purely organic disorder and those who view it as psycho-logically driven.

It is tempting to be obtuse at this point, to hide my opinionon the matter amongst the opinions of others. This is a verycontentious issue whatever stance one takes. One of the foremostexperts in CFS in the UK is reported to have received regulardeath threats for his position on the disorder. He is responsiblefor the largest number of scientific studies into CFS and yethe is accused of discouraging research in the area. He devisedthe most effective treatment programme for sufferers and at thesame time he has been vilified for encouraging neglect of patientsand leaving them to die. He is the person in the UK who hastaken this illness the most seriously and who has devoted muchof his career to solving the riddle, and yet he is accused of quitethe opposite. His sin is that he is a psychiatrist and that he hasemphasised the importance of the psychological mechanismsin the development and perpetuation of the chronic fatiguesymptoms.

I will not be obtuse. I believe that psychological factors andbehavioural issues, if they are not the entire cause, at the veryleast contribute in a signicant way to prolonging the disabilitythat occurs in chronic fatigue syndrome. Do I know that forsure? No, nobody does; but I am influenced by the lack. ofevidence for an organic disease. ME/CFS sufferers do not usuallyhave any objective physical ndings to explain their fatigue.They have been likened to those who had multiple sclerosisbefore that disease was properly understood. Their plight hasalso been likened to those victims of AIDS who died beforethe virus causing it was discovered. But even before the plaquesof inammation that are responsible for damaging the nervecells were found in the brain to explain MS there was objectiveevidence of neurological deterioration to conrm the physicalnature of the disease. Even before HIV was discovered as thecause of AIDS there were multiple blood test and other abnor-malities that left no doubt as to the physical basis for the disease.

There is always much concern amongst ME/CFS sufferers

that their condition simply hasnt been found yet. Doctors havethe same worry, that they have missed something. In fact long-term follow-up studies of ME/CFS patients show that if theoriginal diagnosis was made in a sound manner in the rstinstance, it would be exceptionally unusual for an organicdiagnosis to emerge at a later date. The same studies also showthat full recovery from the syndrome is very rare. The illnessusually continues unabated but no evidence for an organicillness is ever found.

The World Health Organization classifies ME/CFS as a neuro-logical disorder. To a neurologist this is more of a practicalclassication than an indication that ME/CFS is a neurologicaldisease. In truth the term myalgic encephalomyelitis has beenalienating to neurologists. Encephalomyelitis in its literal inter-pretation means inammation of the brain and spinal cord. Itis a condition seen by neurologists regularly, either caused byviral infections or autoimmune disease. Affected patients areoften morbidly ill and confined to intensive care units. Absoluteevidence for the presence of that inflammation is seen on scans.There is no evidence for inflammation of either the brain orspinal cord in CFS sufferers and the misnomer creates abarrier between neurologists and those with CFS. Nor hasthere been any convincing evidence for a muscle or nerve diseaseas a cause. Most neurologists therefore do not see ME/CFS sufferers.It is not that they do not believe in the solidity ofthe patients suffering, but rather that they do nor believe thatthey can help. In my early training in neurology I encoun-tered many patients with CFS, but more recently neurologistshave distanced themselves from this disorder and patients aremore likely to seek help from immunologists or endocrinolo-gists. I do not currently see patients for the purpose of diagnosingor treating CFS, but many of my patients with dissociativeseizures have a history of ME/CFS and there is something veryinteresting in that fact alone.

Many ME/CFS sufferers cite evidence from scientific public-tions that they believe supports an organic cause for the Indeed a variety of scientific studies have demonstrated repro-ducible anomalies in a range of different investigations carriedout in CFS. Several viral infections have been implicated in thecause. There is certainly evidence that ME/CFS can pre-ciptated by exposure to an infecting agent, but once has cleared there is no way of explaining how the syndrome ofchronic fatigue develops, except perhaps to consider the psycho-logical vulnerability of those affected and their behavioural response to the original illness.

A number of studies have shown irregularities in the immunesystem of those with ME. But the research is contradictory andthe ndings are not consistent amongst sufferers and thereforedo not provide a coherent explanation for the symptoms they

are said to produce. More recently scientists have become inter-ested in the hypothalamic-pituitary-adrenal (HPA) axis which,as weve seen, helps control our response to stress. In ME/CFSsufferers it has been shown that there is dysfunction in thispathway, so perhaps sufferers cannot mount a sufficienthormonal response to stress when it is required of them. Thismight explain why stressful events, either psychological orphysical, can trigger the illness and why those affected cannotrecover when faced with stress. But again there is controversy,not all studies agree, and not every patient shows a hormonalabnormality.

No single scientific study provides either an absolute explana-tion or a diagnostic test for ME/CFS, but what they all do isconrm the physical reality of the illness, that systems of thebody are not functioning as they should. They are evidencethat even if the cause is psychological, the symptoms are notimagined.

So is it a somatisation disorder? ME/CFS is an illness in itsown right that has not traditionally been referred to as asomatisation disorder, but that is not to say that it does notshare common ground with psychosomatic disorders. It mani-fests as multiple medically unexplained symptoms. Sufferers ofboth disorders carry similar behaviours and illness beliefs andneither leads to evidence of organic disease however long youwait. ME sufferers also have many characteristics belonging tothe diagnostic features of depression. Depression can manifestas tiredness and difculty sleeping, for example.

And of course ME/CFS and psychosomatic disorders arelinked by the same overarching question: are they real? Ask the250,000 ME/CFS sufferers in the UK that question. Their livesare devastated by this illness. The reality of how life-destroyingthis problem is cannot be argued with. The question that we,the unaffected, must answer for ourselves is, can we give adisability that has its roots in behavioural or psychological factorsthe same respect that we offer to a physical disease? If the answeris yes, then none of the other controversies matter any longer.

It is important to recognise that ME/ CFS sufferers have goodreason to be defensive of their diagnosis. Many medical staffand lay people do not see this illness as either psychological ororganic. Many people consider ME to be a non-illness, morea personality flaw than a medical complaint. Although CFS isnot common many of us will have encountered someone inour lives who is affected and in those encounters I suspect someof us have had moments of cynicism.

So Rachel rails against the attitudes of others, and why shouldntshe when there is so much judgement about? But at the sametime the strength of the defence that people mount against a

psychological paradigm for this illness can be a problem.

Sometimes, the more strongly something human and ordinarylike sadness or stress are denied, the doctor becomes suspiciousof subterfuge or of something being hidden. I have heard itoften from my own patients: I had the most wonderful lifeuntil I fell ill, I hardly ever had a reason to feel stress. And Ithink, how could that be? I have not had a day in my life withno stress at all. And my patients who have a diagnosis of anorganic disease, such as epilepsy, are very open in their admissionabout how stress affects their illness. Stress makes everythingworse - epilepsy, diabetes, asthma, migraine, and psoriasis areall exacerbated by it. So why would that not be the case forsomatising disorders or CFS? In the absolute rejection of stressin these sufferers is there something for us to learn? Its possiblethat many patients worry that if they admit to any hardship intheir lives then the doctor will latch on to that as the culpritfor their illness and lose the ability to keep an open mind. Orperhaps it is not that simple. People with conversion disordersare often recognised to be alexithymic, which is a loss of theability to interpret your own emotional state. Ask somebodywith dissociative seizures how they feel, and you may get theanswer tired or cold - neither answer contains anything oftheir emotional state. Perhaps those who deny stress do so becausethey do not feel stress, having converted it to something else.

Fortunately ME/CFS is not a common illness.

Somatic symptom disorder by its strictest denition is also rare.

The motor manifestations of a conversion disorder such as paralysisand convulsions will only ever affect a modest number of us.Those illnesses are the dramatic and sometimes bizarre end ofa spectrum, but at the other end of that spectrum lies a morepedestrian set of somatic symptoms that many of us will experi-ence many times in our lives. Somatic symptom disorder affectsone in a hundred, but transient somatic symptoms resulting inillness without long-term disability affects one in four of thepopulation.

A large percentage of people attending gastroenterologyhave recurrent abdominal pain where no bowel disease is found.Irritable bowel syndrome (IBS) is a common explanation. LikeCFS it is poorly understood and a psychological mechanismfor it is not always easily accepted by the sufferers. But thereis a close relationship between the presence of psychologicaldistress and IBS, even if it is not the absolute cause. IBS sufferersoften have a range of other somatic symptoms. They have ahigher incidence of ME/CFS, they have a higher rate of illnessin childhood, and a higher rate of attendances at their doctorssurgery. Many of the patients that I see with conversion disor-ders, particularly those with dissociative seizures, have a previous

diagnosis of IBS, and that association once again gives me pauseto think. And like ME/CFS patients, those with IBS have avery high rate of depression and anxiety.

Fatigue may be common, but pain is the commonest psycho-somatic symptom and it is represented in every sort of hospitalclinic. In the rheumatology clinic, joint and muscle pain thatcannot be explained are seen frequently. Fibromyalgia is onedisorder fairly often seen there. It presents as widespread musclepain and is diagnosed when there is evidence of pain in elevenout of eighteen potential tender points. Fatigue is also a ubiq-uitous feature. Fibromyalgia has so much in common with ME/CFS that many doctors now consider the two disorders to bemanifestations of the same illness.

Pain comes to the neurologist as headache. Chronic headachesare increasingly called chronic migraine, with old names liketension headache falling out of favour. And yet antidepressants,psychological intervention and relaxation exercises remainstandard in the treatment - which is telling in itself. Chronicheadache comes with mood disturbance and with all of thecommon features of ME/CFS and IBS.

Every sort of clinic is equally represented with potentialsomatic disorders presenting as pain. In the cardiology clinicthere is non-cardiac chest pain. In the gynaecology clinic thereis pelvic and abdominal pain. In the urology clinic there is painpassing urine. But while pain is the commonest somaticsymptom it is far from the only one. Respiratory physicians seepatients with unexplained shortness of breath. Dermatologistssee itching and rashes that quickly come and go. Ophthalmologistssee people with blurring of vision, ENT doctors see people withhearing loss.

ME/CFS by its fullest denition is not verycommon, but chronic fatigue not fullling the criteria for CFSaccounts for one in ten consultations with a family doctor.

Dissociative seizures are rare in the wider community but onein ve people who go to an epilepsy clinic transpire to havedissociative seizures rather than epilepsy. Thirty per cent whogo to a rheumatology clinic suffer with pain for which medicinecannot account. Fifty per cent of those who go to a generalmedical clinic have symptoms that cannot be explained. Sixtyper cent of women who go to see a gynaecologist have symptomsfor which no cause is found. The impact of our emotionalwell-being on our health is not a triing problem.

I only wish I could convince Rachel of this.

Samuel Johnson said that the chains of habit are too weak to

be felt until they are too strong to be broken. There are waysto help Rachel but she must be willing to give something upand to change some patterns of behaviour. I tell her thatalthough we differ on some points, there is one thing aboutwhich we are both in absolute agreement: that she is gettingworse instead of better.

She says, 'Yes.'

If we agree on that, then can we agree that your current wayof managing your fatigue is not helping?

Yes.

And if that is the case then what is there to lose by trying adifferent way?

It depends what it is.

I could not persuade Rachel to consider anything but medi-cation to treat her fatigue. The only treatment proven to offerat least some benet to those with ME/CFS is a graded exerciseprogramme and cognitive behavioural therapy (CBT). AndRachel was quite right, CBT is no magic bullet, it is hard work,it doesnt help everybody and she had tried it before. I remindedher that if somebody with diabetes doesnt get better with theirrst tablet, they dont abandon the treatment, they try a higherdose. If someone with asthma does not get better with oneinhaler, they try a second. ME/CFS is no different to that, somepeople get better with one course of treatment and some peopleneed a second. Rachel would not be moved. As we talked I wasaware that she didnt really want a better treatment, she wanteda better diagnosis. And why shouldnt she? ME/CFS is a disa-bling illness, the treatment is laborious and slow, the outcomeis often poor and for all of that, outside her family, she wouldget very little understanding or sympathy.

The diagnostic label that a doctor offers the patient has manyimplications. With a diagnosis comes treatment and prognosis.

You have gastroenteritis. Take this tablet and you should bebetter within one week. Most people recover and the problemis not usually recurrent. Once you know whats wrong you canconvey it to friends and colleagues. You know what to expectnext and when you might recover. A label validates our suffering,both to ourselves and others. If I have a cough and a runnynose and I tell people Im suffering with a cold, I am saying Idont feel great but neither is it all that bad. But, with noevidence except how I feel, I might instead choose to tell peopleI have the flu. I have elevated my suffering. But what if I takethe word flu and add a prex, man-u? The entire illness hasbeen transformed again.

Neurasthenia, hysteria, melancholia, depression, chronicfatigue syndrome, chronic fatigue immune dysfunctionsyndrome, myalgic encephalomyelitis, yuppie u: all these labelsimpact upon how a patient receives their diagnosis, how theymove forward and also how they are received by the world. Ifyou have been housebound for a year, have lost your job andyour relationship has broken down, its not hard to understandthat the label 'yuppie u does not encapsulate the experience.I see this in my clinic regularly when I tell a patient that theirseizures are not due to epilepsy. In my early years as a consultantI often called dissociative seizures by another common name,psychogenic non-epileptic attacks. Using that label I had manyconversations that went something like this:

'The seizures you have are called psychogenic nonepilepticseizures.

'So now Im a psycho, am I?

You know thats not what I mean.

[...]

Over-attentiveness, particularly when achild is sick, can also serve as a risk factor for unexplainedmedical illness later in life. Attitudes to illness and health canbe in part learned through experience. Chronic illness, eitherin a child or in a member of their family, can modulate howthey manage illness and respond to stress in the future. Earlyexposure to chronic ill health can inadvertently encourage illnessbehaviour and, as we have seen, shape how psychosomatic illnesspresents, with patients often suffering from symptoms they havecome across before in others.

Behavioural factors may also be important in the developmentof chronic pain and chronic fatigue syndromes. Disorders likeME and irritable bowel syndrome may not have their originsprimarily in stress but instead in mistaken beliefs about howbest to respond to changes in your body and illness. Thetendency to respond to every bodily sensation, rather thanignore most of them as the majority of us do, may be learnedat a very young age.

[...]