# negatives?



## trbell (Nov 1, 2000)

this may be mor positive than most of the things posted here? from co-cure:MODERATOR'S NOTE: Sent obehalf of Jill Booth, jill booth <jill###ihug.co.nz>Subject: Talk by Doctor Ken Jolly New ZealandDr Jolly has given permission for this presentation to be sent onto you. Hehopes it will reach more people and maybe help more people than just thosefew who attended our AGM.This talk was given by Dr. Ken Jolly on 4th August, 2002 to the AGM of theNew Zealand ME/CFS Society.My Perspective of ME as a patient and a doctorI am honoured to have been given this chance to talk about ME and I hopethat both people with the illness and their carers might hopefully gainsomething from it that might ease their burden. I would like to thankJanice Roseingrave, whose idea it was that I give it. She has a realtalent of thinking of ideas that creates work for me.I have had ME for thirty years. For those of you who have had ME for a muchshorter time don't panic! Thirty years is an unusual length of time tohave this "Dreaded Disease." A few years is a much more normal duration. Iam a bad advertisement for the illness so from that point of view maybe Ishouldn't be giving this talk at all. But as I said, having it this longhas given me time to ponder the many and varied aspects of ME. We shouldall be experts at something in life and I suppose for me, ME may be thatthing. I think constantly that patients know more about this conditionthan any doctor can ever know as they are living with it, every second ofevery day. Thus they are learning about it continually. Experiencingsomething is the only way to know exactly what something is like. Symptomsto onlookers are only words, whereas to patients they are reality.When I was thinking about what to say in this talk I realised that I shouldspeak from the heart and to convey truthfully my impressions of ME.That isI should say the truth of how I see ME. If I have any personal philosophyat all it is that truth is important. I was interested to learnrecently from a TV programme that science is meant to be the pursuit oftruth. No wonder that science has intrigued me so much all these years. Sowhat follows is what I think and believe. Many of you will not agree withall that I say. This is understandable. With a subject with whom no onehas all the answers there will be many opinions and some of these will beconflicting. Everyone is entitled to their opinion about this illness asthere are no absolute answers. If there are points that you disagreewith vent any anger at the illness, preferably not at me! It may be evenbetter to write down or verbally express your opinions too. For me thereis a feeling of vulnerability when talking publicly about ME, because Iwill be speaking about a subject which has greatly affected my life.Subsequently a wide range of my emotions is involved. Because ME,unfortunately, is still controversial this of course adds to thedifficulty. For many years my wife and I didn't talk openly about myillness because of the stigma surrounding ME. You are wary when people say"you are wrong, you have made it up," or that "you believe in somethingincorrectly." Words like this can be very hurtful when it is your very ownlife that they are talking about. So it feels risky speaking about eventsthat affect you personally, but I hope others may do the same in thefuture. The more people that stand up and speak about their experienceswith ME the less others can deny the illness or tag it psychogenic.When I met someone with ME once and after she had introduced herself, shesaid "welcome to the club." I remember making some fascicious comment atthe time about it being "not a very good club to belong to" but when Ithought about it later I realised what she had meant. The ME Club is aselect one. Fortunately only a few people (as a percentage) get to belongto it. I wonder though, if this percentage may be increasing. It is a clubin the sense that to gain membership to it you have to suffer from ME.That is you have to know what the symptoms feel like. Some of thesesymptoms can be pretty weird and it is difficult for people not in theclub to understand all of them. Being a member of course brings mostlyvery bad things into your life. However there are a few, a very few,things which when you are in a very positive frame of mind (and thisusually requires that you are also in a well phase) that could barelybe described as being beneficial. They are of small comfort and everyonewith ME wishes every day that they were not in this club. However I alwaystry to look at things positively although this can be very hard at times.I thought I would mention some of these small good things that I havediscovered. I won't go over the terrible things that this illness does doto us as most of you are reminded of them personally, every day. I am onlyable to think of these good things when feeling well and think morenegatively when feeling like hell on earth.One of these good things is that I think I am more complete as aperson than I was before having the illness. This might sound ironic as sooften we physically feel like only a fragment of a person. What I mean isthat I feel I have a greater understanding of humankind and the woes thatthe human race can be forced to face. Consequently we learn how peoplereact to chronically ill people. Although we are ill well people surroundus and each reacts in individual ways. This may not seem important but Ithink it is. I think how people react to the chronically ill reflects insome way upon the deepest aspects of humanity. And I think you have to beill, to really see this. People seem to fall into two basic groups in thisregard. There are those who innately seem to be able to accept chronicillness and it's associated trappings and those who cannot. This divisionoccurs amongst the general public as well as with health professionals.Thus how a health professional reacts is, I think, a reflection of theirinnate humanity and not due to their educational influence. It isimportant to be able to make this distinction so that you can eliminatethose people from your life that are unable to accept chronic illness.Younger sufferers might describe this as ridding their lives of negativeenergies, although I am way too old to understand this concept. In myexperience those people who cannot accept chronic illness seem incapableof change and for this reason it is a waste of vital energy to try to getthem to.Another small benefit is the incredibly good people that you meetin ME circles. Many of these people have ME themselves and you thus end upsharing a special bond because you empathise over how this ME-monster hasdevastated both of your lives. I guess once again that this is the clubaspect that the person I mentioned was referring to. It is comfortingand relaxing to be in the company of other MEers because we struggle sohard at times, whilst in the company of healthy people. It is myexperience that people who have ME in general, become kinder, more caringand more insightful through having this illness. Because of this manyclose bonds and friendships are made between people with ME. We all try tosupport each other, even if this is in a limited fashion due to our energyallowances.As well, people with ME learn to appreciate things in life which healthypeople never become aware of. These are usually the simpler pleasures oflife because we have had to give up on more energetic activities. We takenotice of the things in the world around us. This is because we are forcedto just sit so often that we tend to end up gazing at the thingsaround us. We might not be able to do a lot of things but because of thiswe have at least learned to smell the roses. In this way it appearsthat people with ME become more attuned to nature. Statues of Buddha andThe Thinker both remind me of people with ME. We do a lot of sittingand thinking at times. People with ME learn to gain enjoyment from lookingat the sky or at gardens, as examples. Normal people are often too busyrushing about in their daily lives to notice such things. In a similar wayME people often take up hobbies of some sort, as these are much gentler onthe body than sports or other such activities. These open up new avenuesof interest for many sufferers.Because we notice the environment about us I feel this is part of thereason that people with ME often become interested in natural health. This isseen, somehow as being more environmentally connected. Also it isnatural to assume that because our bodies feel so out of balance thatthe environment in which we reside may also be out of balance. The otherobvious reason why people with ME become interested in natural health isbecause orthodox medicine cannot cure them and is seen to so often failthem. Further, non-conventional medicines aid the sufferer in gaining asense of control of their lives, as they can be often self-prescribed.ME has also taught me not to worry about the little things in life. We seepeople being stressed by small issues all the time. When you have't gotyour health you realise these things are not important and not worthstressing over. ME has taught me also to relax. If I overly worriedabout things I would tense my muscles, this would expend energy and Iwould soon feel worse. It didn't take long through PavlovianConditioning for me to realise that to avoid these awful symptoms I hadto relax. That is, negative reinforcement quickly extinguished thisbehaviour. Unfortunately not all my symptoms went away of course onlythose that I induced in this way. As well, this calmness also had anegative effect. In this way I learnt to not get excited about things, asthis also used energy and made me feel worse. Subsequently I didn't lookforward to family trips etc. If I thought about them and got normallyexcited I would feel worse and then I would be not well for theall-important initial travelling part, for which my body would need to bein reasonable shape. It has been theorised that adrenaline can exacerbatesymptoms and this may explain some of this experience. So I missed thisenjoyable and free part of travelling. I am not well enough now, ingeneral, to travel at all.I discovered that deep relaxation helped overcome the symptoms ofsleepiness and weariness etc. Yoga and meditation are probably effectivein a similar way. I don't mean to give a picture of ME people as beingall calm and placid and floaty and drifting about the world in somesort of self-induced, semi-comatose, drug-like state. This illness hasalso generated, I am sure, some of mankind's more explosive moments.Having a chronic illness teaches you how precious life is. This is apractical lesson that most people probably go throughout life neverlearning. It shows you how 'good' life is. Well that is it would be, ifyou were well. I remember in medical school being taught about a surveythat asked people to list, in order, what the most important things inlife were. Inevitably health always came at the top of the listbecause all the other things were always dependent on having good healthto begin with.I am going to mention some of the unrelated thoughts I have had overthe years regarding ME. As I said some of them, like the inability totolerate flashing lights or noise, are now well accepted ME phenomena. Inretrospect I know realise it may have perhaps benefited some people ifI had mentioned them earlier. Perhaps we should talk about the strangethings that this illness does do to us more. However we of course thinkthat these symptoms are the ones most unlikely to be believed. Yet itcould be one of these that give a clue to the core of the illness. I haveheard of cases where researchers have followed useful lines of research,after hearing a patient describe a particular symptom.ME research seems rather confusing at present. Instead of the nature of MEbecoming clearer, recently it has become more complex. I think though thatthe current developments are a necessary phase that we have to go through.Although things may seem less clear-cut this uncertainty will in itselflay the foundations for a clearer understanding in the future. In pastyears I was fairly clear in my mind what CFS and ME were. Now I am not. Ithas recently been realised that different researchers were talking aboutdifferent conditions when they used these names. This explains some of theconfusion. Certain psychiatrists, such as Simon Wesseley and hiscolleagues, maintained that graded exercise improved their patients. Yetpeople with what should now perhaps be called classic ME or strictlydefined CFS knew that exercise of any sort, whether it was graded orotherwise, tended to make them worse. This situation was explained by thenotion that different researchers were studying different illnesses, yetcalling them all ME or CFS. This gave rise to the idea that there must besub-types different illnesses or different varieties of the sameillness, all under the umbrella term of CFS. It is now assumed thatWesseley et al. were investigating a diverse group of patients. Some ofthese patients may have had depression, a disorder known to be improved byexercise. This improvement would have biased the results of the group as awhole. To make sense of this it is now probably best to think of CFS as anumbrella term and ME as a specific illness within this umbrella. ME, theillness described by Ramsey in the 1950s, is a specific disorder whichincludes muscle fatigueability, worsening of symptoms with exercise,neurological symptoms and symptoms whose severity alters with time andwithin the same day. Because of this situation ME may again become thepreferred name for the illness which many of us exhibit, rather than CFS,which has been popular with scientists in recent years. There is a strangeirony if this were to become the case as the use of the name ME would haveturned full circle. It was an initial term, fell into disuse and couldconceivably be used once again. Although the initials would remain thesame, presumably the scientifically incorrect itis part would bereplaced by opathy. To my mind, to lessen the confusion still further,CFS should stand for Chronic Fatigue States. In this way it becomesobvious that the term covers various illnesses. All those people whofulfill the 1994 Fukulda CFS criteria would be said to have CFS. Thismakes the diagnosis simpler for both the doctor and the patient. Therewould be no confusion. The patient readily has a diagnosis that isabsolute, as long as he or she has the criteria. Then, at some later date,it would be up to the medical practitioner to determine exactly whatsub-category of illness the patient suffers from. The sub-category of MEwould require new and stricter criteria such as those recently proposed byseveral authors.I do not recommend that ME patients not exercise at all. It is essential toexercise within allowable limits, to prevent contractures of the musclesand deconditioning. One thing that I have noticed with myself is that I amable to anaerobically exercise, but not aerobically exercise. That is, Iam not able to exercise to a level that causes puffing, as this quicklybrings on symptoms. This suggests to me that there is somethingfundamentally wrong with cellular respiration, in at least one MEsufferer!Although I do not agree with some of the more outrageous psychologicaltheories of ME I do see that, as with any illness, psychological effectsof the illness are important. I do not believe, in any way shape or form,that ME is a psychological illness and represents illness behaviour,somatisation or deconditioning etc. in the afflicted patient. Suchconditions do exist, but their relevance to true ME is remote. Statements,such as that it is all in the mind, when directed at ME patients, aredemeaning and callous. I believe it is partly up to the ME community tostand up and refuse to tolerate such statements any more. Stress cancontribute to the triggering of the illness and psychological effects ofthe illness are common. I wish that psychiatrists would realise theimportance of this area and concentrate on helping us cope with theillness, rather than psychiatrically pigeon holing it.Denial seems to be an important coping mechanism for me. I can be unwellfor months on end in bed, in remarkable pain and often too weak to turnover. And yet once I have improved, even within a few days I haveforgotten very rapidly and sometimes even totally how bad I had been. Isometimes can't tell people afterwards how I felt because I can'tremember. My brain has forgotten the sensations but even moreespecially the feelings that were associated with them. If pressed Icould relate the physical symptoms perhaps, but not really their emotionalconnection. This brain phenomenon is true denial. I have forgotten the badaspects and the feelings. I am not sure if this forgetting is entirelyjust denial or a true neurological symptom of ME. Perhaps as I enter awell phase again my brain begins operating in a new and healthier way.When well I feel more sociable again. Once again I am not sure if this isbecause sociability is not evolutionarily advantageous in sick people orthat this unsociability is a true ME symptom. Denial does help me copewith the illness but has also created some rather humorous dangerousmoments, due to my ignoring my incapabilitys. In retrospect some of theseincidents have appeared funny but do reflect the power of the brain andhow it helps us cope in times of health and in non-health. I think therecognition of these psychological mechanisms are of extreme importance inhelping us survive this illness. If there are no physical cures thencoping becomes the most important thing. It is ironic that those peoplewho could have been our greatest help (psychiatrists) have so far been ourgreatest hindrance to recovery. They have also unwittingly contributed toour continuing struggles with confidence. People with ME invariably looseconfidence because they have in many cases lost their jobs, their roles insociety, lost relationships and on top of all this are restricted, sooften, from practising social exchanges. This situation is worse when MEstrikes in that essential developmental stage of adolescence whenteenagers are trying to blossom into adulthood.Some of those times which have seen me totally ignoring the fact that Ihave ME and pretending to be normal include: trying to ski down a mountainslope which I was incapable of doing, capsizing a yacht and being unableto right it and going for walks from which I was unable to return. Thesemightn't sound like very dangerous activities but believe me I wouldstill be lying on the ground or in the water today if it hadn't been forother life-saving individuals. Because of the onset of extreme exhaustionwhen I have tried to get out of such situations near paralytic-weaknesshas set in. I have never read articles from other MEers describing gettinginto such similar situations and I would be interested to hear if thisexperience is more widespread.Any hypothesis about the mechanism of how ME affects our bodies mustexplain how symptoms can occur immediately. The existence of a latentvirus by itself could not do this. Any viral reactivation that couldcause symptoms would take hours or days to do so. So too, would immunechanges. This is not to say that these do not exist as part of the MEproblem, but that there must be other mechanisms which can immediatelyswing into action, or are already there, but need unmasking. Thisincident also demonstrates the importance of secondary psychologicalphenomena such as denial, in my case. It has often amused me how somepsychiatrists think we are magnifying our symptoms whereas I think thetruth is more likely to be in the opposite direction. We want to be well somuch that we ignore them. Lastly it demonstrates my extreme stupidity.Many of you listening to this talk will be feeling secretly quite pleasednow that when I was practising I was never your doctor and could nottherefore administer the sort of advice I gave myself!My simple model of ME is that our bodies are not homeostatically inbalance. Some system or perhaps an interaction of several systems is not asit should be. Our bodies are only just coping as long as there is nostrain. Add to this some sort of external or internal stress and wedecompensate and develop symptoms. By stress I mean strain. Thiscan be physical exertion, emotional stress, hot or cold temperatures, Gforces (as with the roller coaster), intercurrent infections, chemicalsmells, movement such as in cars and many others. The use of our eyesbrings on symptoms in most MEers and I recently realised this is notunexpected when I read that a large amount of energy flows through theneurones of the optic nerve compared to all other sense organs. This mightexplain why some ME patients find it easier to lie down when reading. Thisis another odd behaviour that is hard to explain to well people. I describethis as a simple model because it does not specify which systems might beout of balance. But for the patient to understand this illness perhaps itis only the general concepts that need be understood, not the specifics,which hopefully can be left to laboratory wizards.I personally think there will be many abnormalities found in ME patient'sbodies. These will be both central (the brain) and peripheral (the rest ofthe body.) A virus reactivation or immune change may explain the largecyclical changes that occur in health. That is as the virus reproducescreating larger numbers of viral particles or our immune system fires upwe enter a relapse phase. Such a virus or immune activation could bothdamage our energy supply systems that could produce the sustained as wellas the immediate symptoms experienced. As the virus spreads or the immuneeffects progress more and more body systems could become involved creatingthe well recognised new symptom development over time which occurs inthe chronically ill.I believe the mechanism that causes the symptoms of ME will turn out to benot dissimilar to other illnesses. When it is discovered it will be fairlysimple and straightforward and may even appear obvious in retrospect. Thisis not to say ME is like other illnesses. It is more complex. For onething it has many more symptoms then most other known illnesses. Also itmanages to affect the very core of what we are, so much. It affects everydecision we have to make, every second of every day. This often becomes soregular that these decisions become partially subconscious. There are notmany illnesses that affect nearly every function of our physical body, howour brain functions, our mind, our social functioning, our credibility,our confidence, our spirituality and the core essence of who we are.Although perhaps the last less so. I still believe I am me underneath. Mypersonality is the same, albeit a rather slower version. I think I stillhave an incredible sense of humour, although our children are sure this isa symptom of the illness. Whatever has done this to us it will neverchange who we are!A recent study studied "hassles" that occur in ME people's lives comparedto those with other chronic illnesses. Although other chronically illpeople certainly do experience major hassles the ME group tended to reportdifferent ones. They were more varied, they tended to be greater in numberand more often occurred in the psychosocial sphere. The researchers feltthat these type of hassles occurred because of the hidden nature of MEand because it often labelled as psychogenic or non-existent. Thus,although ME patients suffered all the normal problems associated withother physical disabilities, there were additional ones too because of thestigma of the condition. When feeling awful patients have to often keepthis to themselves. They experience societal and media disbelief,rudeness, insensitivity, doctor disbelief, psychiatric aspersions and thelist goes on.A friend recently pointed out social events often become nightmares. We can'tconcentrate, can't remember people or their names, feel awful,distant, disorientated and sleepy. We can t hear because of tinnitus,feel like we might faint or create some terrible social indiscretion, suchas vomiting. On top of this we are then often asked questions that we can'tgive sensible answers to, like "what job do you do?" or "how are you?"We loose friends, spouses and medical professionals faster than the eye canblink. But we do usually try very hard and to give credence so, in general,do those people. It is hard for people to understand this illness and inmy more objective times I can understand how difficult it is for them. Howcan they understand when they see you out shopping one day, apparentlywell, and then hearing from you the next day, saying that you can'tattend the funeral of their best friend or pet rooster or whatever it maybe.ME should be in the Guinness book of records for being the illness with themost symptoms of any disease in the world. Because ME has so many symptomsit makes it difficult to explain the illness to people, adding to people'sgeneral disbelief. Who has the time to listen to a list of 50, or 100,or however many symptoms there are? And of those that do, most would haveyou labelled as a hypochondriac well before you had got past even thefirst ones. So instead, when asked about the illness, many often glossover a proper answer and end up mumbling something about fatigue orheadache or something and in so doing cleverly add to the general public'smisconceptions about the illness. But how can you tell someone brieflyor concisely about something that is so complicated, so variable and sopersonal? The main problem is that you know that most people's experienceof illness is of acute, short-lived problems that get better. So you areon the backfoot before you start. The complexity of this illness makesexplanations about it more difficult. Most of you probably recognise thatexperience of seeing people's eyes glaze over, or that look of disbeliefthat begins to creep across their faces as you attempt to describe it.Such experiences tend to make us wary about getting into complicateddescriptions of the illness. On the other hand, many sufferers havememories of times when they had the chance to educate a genuinelyinterested person, but then blew it. There are other times when you haveto explain to people that you can't tell them about it because you haven't theenergy to explain to them. A Catch-22. "I can't tell you about theillness because having this illness means that I can't tell you aboutit." A weird sort of circular argument that we get trapped in. In thissituation we worry that the enquirer thinks we are being purposely obtuseor aren't interested in explaining anything to them. And the more we tryto concentrate on these explanations often the worse it makes us feel.I said I would express my impressions as honestly as I could. Along theselines it is my opinion that alternative medical treatments are not usuallyof great benefit to ME sufferers. Some will feel that this is what I wouldbe expected to say from my position as a doctor. However, perhapssurprisingly to some, I would also state that I don't think conventionaltreatments are particularly effective either. Some people with ME havefelt that certain treatments, which are often referred to asalternative, have benefited them. While that is wonderful for thosepeople who have had apparent success in this way I have raised this pointso that people should not in general get their hopes raised too much onhearing of such successes. This is because people can feel very despondentor even guilty if they do not end up also working for them. Although thismay not appear to be an important point I made it because suchdisappointments can be soul destroying on top of having a devastatingillness. I don't believe that this illness is different from any otherillness in that specific treatments do not need to be tailored to eachindividual. When the causes are known of each category then hopefully realtreatments will naturally follow.Following this argument do not feel that I am attempting to destroy people'shope. On the contrary. In reality I believe there is much hope forpeople with this condition. Most people get better or at least improvesubstantially and even for those that don't there are now availablemedications and treatments that alleviate many symptoms. Treatments willcontinue to improve in the future. Our understanding of what is going onis increasing almost daily and better treatments will follow from this. Ina way similar to how the mystery of cancer has been unravelled, the causeof ME will not come through one single, major breakthrough, but throughsmaller discoveries. This is like finding the parts of a jig-saw puzzleand then piecing them together. There are quality researchers involved inME research world-wide and new ones join the fray regularly. The mainproblems seem to be a lack of finance and a lack of political will. Theyears of following ME machinations have shown me how important medicalpolitics are to this issue. The ME community needs to fight forrecognition so that people in positions of influence start taking noticeof the illness. The problem is of course, that we are all ill andtherefore find political activism a strain. But the smallest action is again. I believe it is time that MEers became more politically activeworldwide, in order to gain the recognition that other illnesses haveachieved. We deserve better funding for research and this should be at thetop of the list of future priorities. I said truth is important to me.I believe that the search for truth is paramount to conquering thisillness. ME sufferers deserve a better future than they have at present.I believe our best hope for cure lies in scientific research. Alternativemedical theories are, at best, guesses or beliefs. The proponents rarelyinvestigate their own hypothesise. If research is undertaken into naturaltherapies it is usually done in conventional establishments. I personallyfind it difficult to undergo treatments that have not been assessed.However ideas from the alternative sector should be listened to as theymay also provide valuable pieces of the ME jigsaw. A patient oncedescribed to me that he felt like he was poisoned. This is a gooddescription of how we feel. I also think that it is a reasonableexplanation as to why we feel so bad. It is only natural to assume thatthe bad feelings that we have inside might be caused by somethingoutside that is coming in. I suspect that this is how the chemicalpoisoning theory of ME has arisen. In many ways it does feel like we arepoisoned.A situation that is analogous to the current situation we face today withME, is how TB used to be viewed in the past. Before antibiotics wereinvented patients with TB were put into sanatoriums and subjected toisolation, clean air, good food and plenty of rest. Many strange cures andapothecaries abounded. To my knowledge it was never shown whether any ofthis was ever effective, but in the absence of any definite treatment itsufficed. Doctors felt that they were doing something and patients feltthat something was being done. With the introduction of antibiotics andthe possibility of being really cured these interventions ceased andsanatoriums gradually closed down. I find it startling that almost exactlythe same things are advised all these years later for ME. Except no onehas so far suggested the luxury of such places as sanatoriums but I assumethis is because we do not need contagious isolation. I think the samesituation will occur with ME. When real treatments are discovered thenthis non-specific and hopeful advice will fade into ME history.I wouldn't advise people not to try alternative therapies. I think thatbecause this illness is so devastating and because people want to getbetter so much it is normal to try or do anything in order to achieve thatgoal. I do think however that it is a good idea to try to be logical whileinvestigating such avenues. Any treatment should be tried as a trialfor a certain length of time, for example three months. At the end of thattime the efficacy of the treatment should be assessed. A positive outcomefor me would require an improvement far above the normal oscillations thatthis illness goes through. By this I mean that it is difficult to assessthe effect of any treatment on this illness because it gets better andworse so much that an effect due to treatment has to be substantiallygreater than these normal swings. It is difficult to be objectiveabout what is causing improvements because we want treatments to work somuch. If a strict time frame isn't adhered to then one can end up on manydrugs or compounds over time. In this situation you cannot be sure what isdoing what. In fact if you are on many substances they are probablyinteracting with each other so much that they are unlikely to be havingtheir desired effect anyway. In this respect natural products must beincluded as being medicines too. I think the cost factor too should alwaysbe remembered. Any treatment that is enormously extravagant should alwaysbe viewed with caution. Adding further financial burdens to the MEsituation creates further problems.ME or strictly defined CFS is not psychological. I have known from theoutset that whatever I had was not psychological. Psychiatrists of coursewould point out that I am unable to make such a statement about myself.Sometimes I wish they were right. It would be nice, at times, to be ascrazy as a loon. Perhaps then we could escape from that which isunfortunately much more of an unpleasant physical reality. So while Iadmit you can never prove your own psychological stability, I describethat knowing that this is not psychological is like how a person knows that when they have the flu, that it is physical. These symptoms areconcrete and physical. They are not a figment of the combined imaginationsof millions of people from all over the world. The explanation that saysthat this illness has been hysterically created is too illogical tobelieve. The illness is far too complex for separate individuals from allover the world to have independently invented. The syndrome complex is tooconvoluted and has been reported too widely to be an hysterical phenomena.Those that support such a social/cultural ideation of the illness name theInternet as being a crucial tool in the spread of the phenomena. Thisfails to explain its existence prior to the Internet's formation. Forawhile some psychiatrists thought that ME was a form of depression. Almostas soon as this was disproved in the laboratory a new psychological theoryarose. It has always occurred to me that this was not coincidental. Itseemed that as soon as one theory was shown to be not tenable thatpsychiatrists had to come up with a new psychological theory. Thisrevolved something along the lines of exaggerating minor symptoms,believing that we are ill when we are not and the formation of a viscouscycle of deconditioning and over-exercising. Such ideations (illnessbeliefs) do occur in some people but when you try to apply this argumentto this illness and look at the evidence logically it just doesn t makesense. To argue that ME is psychological requires that large pieces of thesyndrome-complex be ignored. Much evidence pointing to a physical causealso has to be ignored.I am enrolled in a worldwide research study of doctors who have ME/CFS.There are approximately 120 ME doctors in the study and each one has tohave a healthy control who is also a medic and of the same gender. Thus itis quite a large study. Each participant was found only by word of mouth.There was never any advertising undertaken to find subjects. To me, ifonly this route found this many, then there must be a large total numberof doctors in the whole world with ME/CFS. And if there are that manydoctors, then this shows how many people there must be in total who haveit. It is a considerable problem and one that I think, so far, the worldin general has little awareness of.What ways are there to cope with having ME? In the absence of specificmedical treatments for ME the answer lies in management of the condition.There is a lot that can be done to improve the quality of life of MEpatients. Although I will not go into detail about these strategies theyinclude such things as pacing , changes to lifestyle, symptomatictreatments for pain etc. The single thing that has helped me the most wascoming to some sort of acceptance of the condition. This meant I was nolonger endlessly fighting a battle which only it could win. Once mymind reached this point it meant that I had more mental and physicalenergy to do things I liked, rather than this valuable resource beingwasted on fighting, or worrying about, the disease. This extra energy alsohelped with recuperation, as did the enjoyment gained from these otheractivities. This point can take a long time to reach though and eachindividual's path to it is different and inevitably rocky. Something thatwas also important to me was to feel that I had achieved something on eachday. This could have meant completing a light physical task when well or amuch smaller thing when not so well. On very bad days when all I could dowas lie in bed in a darkened room this was just knowing that I hadsurvived another day. I don't think the importance of this thought shouldever be under-estimated. During these times you should tell yourself thatyou are a survivor and you should be proud of this. This might soundlike a strange accomplishment to a normal person but I believe should bethought of as our greatest achievement. Others don't need to know aboutthis thought. We only need to be aware of it ourselves. I remember myparents were proud of me when I graduated from medical school, but in manyways I feel the way I have coped with ME is a greater achievement. When weexperience times of feeling low or worthless or that we are unable dothings in life remember your quiet achievement. I think you have managedsomething greater than famous people ever will. I am proud of what MEersachieve daily in their battle.An older doctor that I trained under was wise, yet humorous. He used toask, " What is the one difference between humans and animals?" The answeraccording to him was that "humans have a liking of taking medicines."There is a simple truth behind this statement. Maybe we shouldn'tendlessly search for pills that will cure us but look, instead, atmanagement strategies that could conceivably improve our lot. Until suchcures are found there are things in the meantime that it would be nice tohave in New Zealand. Facilities where the very ill could be looked afterare examples. These would be ideal places for trialing new medications forparticular patients. In this way medications could be better tailored tothe individual. They might also allow for the possibility of respite care.There needs to be better support, education and awareness of this illnessin New Zealand. There needs to be better co-ordination of services so thatphysios, occupational therapists, social workers and councillors worktogether under the guidance of experts in ME care. There needs to bebetter support for young people with ME. There needs to be funding forregular nurse visiting for the very ill. Better training of healthprofessionals about ME is necessary. Early intervention is anotherrequirement and if instituted may decrease the development of chronicityin some people. For all this we need the help of government. Thesesuggestions are the gist of what was recommended in the UK CMO Report andshould be similarly followed in this country.It is important that patients understand a little bit about how research isbeing undertaken to understand ME. This is because if they understand theprocess they may be able to contribute to it and also because it has somepersonnel benefit. Understanding something helps you cope with it. Medicalstudents are taught early on about the different separate factors that cancause disease. This is called the pathological sieve. They are:infections, inflammation (including immune and auto-immune illnesses),injury, poison, radiation, neoplastic (cancers), iatrogenic (doctorcaused,) allergic, environmental, psychological and dietary. All of thesefactors can cause disease and in some cases some diseases are due to acombination of several. Thus the underlying cause of ME could come fromany of these areas. I have mentioned these so that the range ofpossibilities is understood. By not keeping this whole spectrum in mind itis easy to concentrate on one area as the sole cause of conditions such asME. Some people, for instance, even believe that the cause of nearly allillnesses lie in one area. Specialists tend to guess that the cause of MEtends to originate from their sub-speciality. For example infectiousdisease specialists think it is infectious, immunologists that it isimmunological, allergists that it is allergic, psychiatrists that it ispsychological and environmental experts that it is due to chemicals in theenvironment etc. I have mentioned this oddity of research because manyMEers are so often confused by the wealth of theories that exist and thecertainty with which these are expoused. This helps explain some of thedisagreement. It becomes even more complicated when sub-specialists becomeinvolved and then you get cardiologists talking about neurally mediatedhypotension or blood volume and respiratory physicians talking about sleepdisorders or hyperventilation. It is important to understand this melee ofsuggestions because we have to take them all with a grain of salt until,real proof exists. A better cross-fertilization of ideas between theseareas would help. This, but more importantly, a lot more bucks.Many people worry about chemicals as causes of disease. I think viruses aremore likely to be a potential threat in the future, especially now thatbacteria can be combated with antibiotics. Viruses are chemicals, onlyvery complex ones. They are so complex that they have just got the abilityto reproduce themselves. For this reason they are called alive. To methey are like chemicals with brains. An environmental chemical canhave one crack at harming you. Viruses can reproduce and have another go.If this is not enough they can mutate and change and have another go.There may be many unusual ways that they are discovered to behave in thefuture. It is thought that they trigger many cases of ME, althoughchemicals have also been implicated in some cases. My personal theory isthat ME will also turn out to be caused by a virus. This theory is not themost popular at the moment among researchers, but I still believe couldultimately turn out to be the cause of the ME sub-group.Research does need to be better organised. One thing that this haphazardattitude to research has missed is a large scale, well-organisedepidemiological study. Epidemiology is the study of diseases inpopulations, rather than in individuals. There have been studiesdetermining the frequency of ME in populations but more complex studiesneed to be done to determine what factors are connected to the likelihoodof contracting ME. It has never been determined if ME occurs morefrequently in certain areas. What it is related to etc. Finding out thesethings would give us valuable clues as to the cause.Little research has also occurred in the areas of biochemistry and cellularbiology. Yet if this illness is physical then, by definition, there must beabnormalities in both of these areas. So if your soul aspiration in life isto quieten psychiatric pronouncements about this illness forever then allyou have to do is about a ten-year degree course in one of these subjects.(As well as finding the abnormality!)I suspect that my being a doctor has probably helped me cope with thiscondition. It does help to understand a little about what might be causingthe bewildering array of symptoms. On the other hand it is frustrating toknow that medicine knows so much about many disease processes, but notthis one.Everyone who has this illness will have probably been treated insensitivelyby someone at some stage. I am no different in this regard but I am notgoing dwell on this aspect. I do try and understand why it is difficultfor well people to understand and tolerate this illness. Most people haveexperienced colds or the flu and it is the experience of these thatpeople try to understand this illness by. The problem is that with theflu you get better after a few days. This doesn't happen with ME and itis this not getting better that people have difficulty with. In theirfrustration they come up with answers that make it easier for them tounderstand such as that it must be psychological or that we are putting iton. I think there is an evolutionary aspect at work here, also. The sickand weak in society are shunned. To me this makes it even more importantthat we show those people who don't treat us like this, just how muchthey are appreciated.I think that one of the most difficult things that those closest to us haveto come to terms with is coping with our particular form ofsplit-personality. There is a sick us who needs looking after andbeing cared for when we are very ill. Then there is a normal us


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## PeacefulHart (Jun 26, 2002)

Thank you so much for this very valuable insight.


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## Feisty (Aug 14, 2000)

Thanks, Tom!Very interesting.


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