International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Writing on the wall

Discussion in 'General ME/CFS Discussion' started by Quilp, Oct 8, 2012.

  1. Quilp

    Quilp Senior Member

    This the second part of the fictitious interview. The first being the thread ''between right and wrong''
    Although the ''journalist'' is fictitious Patient R is a real person, and has suffered from M.E. for almost twenty years. He is a man who needed to have his say.
    Sorry if I haven't formatted this properly.
    Please note this post does not belong to me.
    Please note, approx 10 pages of A4 long.

    Writing on the wall
    Journalist: The treatments, Cognitive Behavioural Therapy ( CBT ) and Graded Exercise Therapy ( GET ) which we will discuss later, are proving effective for a significant group of people. That cannot be denied.

    Patient R: I have talked to many people on message boards, internet forums, local support groups and I do not recognise ‘’significant’’ and in the context of this disease I do not believe that ‘’effective’’ exists.

    I speak from a position of strength, in that I have lived through this illness for many years. How many Journalists, bloggers, writers, can say the same ?
    I have over five thousand pages of diary notes stretching back almost twenty years; hundreds of testimonies; read dozens of research papers, several books.
    I have consulted physicians, therapists, consultants, private doctors, and others, promising treatments, cures, and an easy way to lose lots of money.
    I am a Professor of M.E by default, with a rabid determination to put the pieces of my life back together.
    Please be honest with me and more importantly, with yourself :-
    How many hours have you spent harvesting the knowledge at source, from us, the patients ?
    How much do you really know about this illness ?
    I suspect you know the names of several associates of the Wessely School psychiatrists, but how many high profile M.E. advocates can you name ? How many have you spoken to ?

    Journalist : Have you tried CBT ?

    Patient R : Yes, and I would like to qualify my remarks by saying I did so only when I was able to leave the house after the first four years of illness. What was I expected to do when I was housebound, as so many M.E. patients are ? The more ill you are the less access you have to ‘’treatments’’.
    What does this say about the society in which we live ?
    I then had to drive for over forty minutes to an area I do not know.
    I found the ‘’CFS Clinic’’ under a sign that said, ‘’Mental Health Unit.’’

    Journalist : And you didn’t get better ? But do you admit that the mind body symbiosis is a critical component in the acceptance, understanding and treatment of health, and particularly so in respect of this disease.
    The complaint that many psychiatrists relate is that patients with M.E. refuse to admit to the complexities of thought, subconscious affectations, as being important elements in ones health.
    Indeed for Cancer patients, Aids patients, others with serious, life threatening conditions, the assimilation of CBT and GET into their treatment programs is accepted as standard and perhaps more interestingly, widely tolerated.
    I do not recall having stumbled across the same level of toxic vitriol in these areas of medicine.
    Indeed the effusion of anger from within the M.E. community appears to be acutely peculiar to them.

    Patient R : In respect of the mind body symbiosis that you alluded to I do not distinguish between the two, they are inextricably linked and as indistinguishable as grains of sand on a beach.
    If one exists so must the other. If one must die, so must both.
    Why are we so angry, why ? Isn’t that an interesting line of enquiry in itself ?

    Journalist : Some have cited such irrational bluster as evidence pointing towards significant psychological factors at the heart of this disease.

    Patient R : How many M.E. patients are cured by CBT and GET ?

    Journalist : I am not suggesting it is a cure, I am suggesting it is an adjunct to the healing process.

    Patient R : The psychiatrists, the ‘’Wessely School’’ claim that CBT and GET is a cure for high percentage of patients, not an adjunct.

    Journalist : A cure for some, not all.

    Patient R : Simon Wessely claims that a third of his patients are cured.
    Dr Esther Crawley, in her own studies has reported much higher resolutions.
    The recent PACE trial, the most expensive research trial into this disease that has ever taken place is being pulled apart like the threads on a woollen jumper.
    The reason we want these clinicians to stop treating M.E patients is very simple - they don’t work, and the millions that are spent on don’t work treatments could be spent on the biological causes for this illness for which there is an exceptional ( and growing ) body of evidence.

    Journalist : Are you suggesting that CBT has no role to play in the treatment of M.E. ? That there isn’t a psychological factor at
    work ?

    Patient R : No that is not what I am saying. Unhappiness, depression, suicidal thoughts, are a natural secondary consequence of any very serious illness.
    I do hope that those who suffer from depression, as an example, do receive CBT/GET because I believe it can be of benefit for this and a range of medical conditions.
    In fact my concern is not that CBT/GET is employed, but that there are not enough experts to administer these therapies.
    My argument is not that there are psychiatrists in the world, but that there are not enough of them. I want to see more doctors, nurses, clinicians, therapists. I see no advantages to having fewer clinicians in a world were new and existing illnesses are on the increase.

    Journalist : Haven’t you contradicted yourself ? CBT works or it doesn’t.

    Patient R : CBT and GET are promulgated as significant treatments, even cures and yet the PACE trial refutes this.

    Journalist : But they still help

    Patient R : So does a healthy diet, drinking lots of water, meditation, acupuncture, the list goes on. All these treatments afford some semblance of relief for different patients in different circumstances. I welcome anything that helps.
    The psychiatrists still believe that M.E. is primarily a psychological illness, that can be significantly alleviated or even cured by CBT and GET, both of which are freely available on the NHS. The overwhelming inference being that the majority of M.E. patients could get better if they wanted to.
    Underpinning all this is the fact that more money has been spent on paper clips for the city of London’s civil service than have been spent on the biological causes of this illness. Why ?
    The psychiatrists are looking down the wrong mineshaft, and that child has still to be found; that child is suffering and will soon die.
    The media hasn’t questioned the inability of the ‘’Wessely School’’ to find that child, but having failed to find anything in Mineshafts X,Y, Z the general public, directed by the media, and scripted by the psychiatrists, are now looking in the direction of the father. Does the father really have a child, just how poorly is he; is he making all this up…..
    An all pervading sense of public repugnance has, for almost twenty years, infected the very suffering that’s already killing me.
    I’m already sprawled across the floor exacting a superhuman effort in getting to my knees.
    My hope spirals closer to the abyss with each passing day. Do you know how frightening that is ? To feel like you are dying ?

    Journalist : Isn’t there some sense that you the patients could be doing more, perhaps by engaging with the psychiatric and wider medical community. Isn’t it time to move on together as one unifying force ?
    You all want the same outcome, your only differences relate to how you get there.

    Patient R : Do we want the same outcome ? Do we really ?
    The road that the Wessely School is driving me along stretches on forever, becoming more baron and desolate with each passing day.

    Journalist : Are you suggesting that The Wessely School is guilty of obscurantism and, or, obfuscation ? Perhaps even malpractice ?
    I put it to you that such comments, given that they are almost certainly actionable, necessitate a considerable degree of evidence, which I believe, with all due respect, you don’t have.

    Patient R : I have no proof that the Wessely School has acted beyond the laws of our land, but I do confess to labouring under the strongest of suspicions.
    I am inviting to the possibility that as fellow human beings they are simply mistaken, that they are in a state of ignorance, unable to see what is there right in front of their eyes. Who is immune to such ignorance ?
    A few weeks ago I saw a photograph of a house that was up for sale in the window of a local Estate Agents. That house was less than a hundred yards from where I live, and have lived, for almost forty years and yet I freely admit to never having seen that house. Why ? How could that happen ? That a house that is so near, so close, that I, who thought he knew every street sign, every garden gate, every door number, failed to notice ?
    We, the patients, the ones that really matter, have screamed at the Wessely School, telling them where that house is. We have shouted so much, petitioned so loudly, to the extent that some of us are being accused of militancy. But the more we scream the more they covers those ears. What crime is this ?

    Journalist : Moving on to Graded Exercise Therapy, or as was stated earlier GET for short.
    My understanding is that by slowly increasing the amount of physical exertion you are able to do, the body is able to recondition itself.
    I often run six miles comfortably, but after an extended break, say a few months, that six miles takes me longer, and it feels much tougher.
    Instead, after such breaks I do three miles, and at a pace that is more comfortable to me.
    By gently increasing my capacity over time, I am able to get back to where I once was.
    Now I am not suggesting that any M.E patient goes for a run, but perhaps a walk to the end of the garden for someone who is housebound, or a walk to the end of the street for one who is stronger.
    Over time ones health will improve, you will get stronger with a view to going back to work.
    I freely gravitate to the suggestion this is an over simplistic interpretation but my premise remains that although the improvement might not be linear, the general curve must be up.

    Patient R : When did you last have flu ?

    Journalist : Spring 2011.…. Possibly the summer.

    Patient R : How long did it last ?

    Journalist : Two weeks, possibly three at the most

    Patient R : What was the advice of your doctor ?

    Journalist : Plenty of fluids, rest, and stay warm

    Patient R : Am I correct in saying you didn’t walk to the end of the garden during that three weeks ?

    Journalist : No, but I was never going to lose my fitness in just three weeks !

    Patient R : What if that flu never went away ? What if that flu lasted for the rest of your life ? Would you walk to the end of your garden then ?

    Journalist : That’s a hypothetical question that no-one can answer

    Patient R : Unless you have M.E.
    You are one and twenty years young, waking every morning with effortless ease, allied to an air of invincibility known only to the young and healthy.
    But there’s a problem; you wake one morning and find that your health has left. What you don’t know, is that your fuel tank has ruptured.
    With monastic discipline you will try anything you know, and some things you don’t, in order to get that car going.
    Scientists, small in number and with almost nothing to spend, look to the fuel tank with some suspicion, focusing on the biological causes of this illness, whilst the psychiatrists focus on the car’s software.
    The psychiatrists, convinced that the complex programs will right themselves if rebooted, ease the car into first gear, second, third, with almost a third of their patients making it into the fast lane.
    Or at least that is what is being claimed………
    They do so with no knowledge of the ruptured fuel tank, working on a premise that you yourself have already defined.

    Journalist :Didn’t we agree ? That the hardware and software are indistinguishable ?

    Patient R :We did, we do.
    If you fix the hardware, the software has no need to be dysfunctional. The depression and suicidal thoughts alluded to earlier will lose their raison d’etre.
    But you cannot fix the software whilst the ruptured fuel tank stays ruptured.
    I cannot break my collarbone, and hope to repair it by graded exercise therapy.
    I cannot stop a bleeding aorta with CBT.
    Don’t you understand ? The psychiatrists will never find that child.
    At the outset you listen to your doctor, the psychiatrist, family members. You cannot understand based on what you feel, why they should be right, but you trust them; you trust them more than you trust yourself because you are scared, afraid.
    Convincing yourself that you can walk to the end of the garden, to the end of the street, to the beginning of the life you once had, despite every fibre of your being screaming with a primeval resonance that is so horrifyingly different to anything you have ever experienced before, you push your car into first gear.
    But the engine screams, the accelerator loses power, the car begins to judder, and despite an effort that has surpassed anything like a six mile run you fall to your knees imbued with deathly exhaustion that has stripped away your capacity to talk.
    You try again, but in even smaller bite sizes. But you are now at risk of making that rupture even worse, perhaps irreparably so.
    Not only do the doctors and psychiatrists tell you not to take it to a garage, but they tell you to continue. And they tell you to continue because their software confirms to them that it is simply a case of differential computer programs talking incoherently; a remedy that will right itself with CBT and GET.
    And so you do, and you push yourself beyond a place that doesn’t even have a name.
    That rupture will only get bigger, that engine will only get worse, that car might even breakdown for the last time……but you don’t know this, why would you, this car is responding in a way you have never known.
    You never stop because as your friends and family members melt away into background noise, you can see your life slipping away with them.
    You suffer a dislocating silence because the looks of disbelief etched across the faces of family and friends speaks to you with words without kindness, without sympathy, without compassion.
    A haunting existence; frightening, bewildering, shocking. Is this really happening ? And why should it happen to me, what have I ever done wrong to anyone ? Why me….what have I done to deserve this ?
    As fiction and reality become entangled, you are sure of nothing and no-one.
    You breakdown in a way that is foreign to anything you have ever experienced, like a seismic hole that trammels the human spirit in an impenetrable catacomb.
    You want to scream so loudly as to break the world in two.
    There comes a time….. when just you and background noise suffer the truth. That all the GET in the world and more besides will never get you back on your feet.
    But still you don’t give up, you never stop. Poisonous voices whisper in your ear telling you that you are lazy, that you could get better if you only tried, and that it’s your own fault that your child is dying in Mineshaft A.

    Journalist : That isn’t always the case though, some M.E. patients to use your parlance, do manage to get into first second gear and beyond, they do recover.
    It must also be said that not all M.E patients suffer to the same extent. To quote professor Simon Wessely, ‘’CFS is a broad church.’’

    Patient R :Did he say ‘’CFS’’ ? Why did he not use the term M.E ?
    How many patients do you know have fully recovered ? I can count on one finger of one hand the numbers of people I have met that claim to have fully recovered.
    Can we be sure that they had the illness M.E in the first place because very few doctors are able to harvest even a modicum of appreciation for an illness that none of them have studied at medical school.
    Let me assure you that no medical graduate in the UK is taught about the illness M.E. though I would like to qualify my remarks by saying that this is relevant for many other illnesses too.
    No two ruptures are ever the same. Some can hold some fuel for longer than others, some in following GET are left with a rupture so large that they cannot move at all.
    Would you like to take that risk with your own children ?
    How would you feel if your children are taken away from you, sectioned, right out of a scene from the Middle Ages ?
    Are you even aware that this has happened in the past and continues to happen today ?
    What if you were the nail and not the hammer ?

    Journalist : Where do you go from here ? How do you hope to move forward.

    Patient R : I am prepared to do whatever it takes. I am facing a poverty stricken retirement, even now, but I want to tell you that I will not let my only child face the financial ruin that has beset me.
    If professor Simon Wessely tells me he can improve my health I will board the next train.
    If Trudy Chadler tells me she can get me back to work I will do my best to listen.
    If Peter White tells me he can change my life I will do everything I can to make it happen.

    Journalist : I have to say I find that immensely poignant, but given our discourse, the question I have to ask is why ? Why would you engage with members of an organisation that you believe has spectacularly failed you and millions of others ?

    Patient R : Only someone who has never walked in my shoes can ask such a question, but I welcome the question nevertheless for I can barely believe it myself.
    Does a drowning man not grab onto the slightest of straws; a straw so light it might fall apart in the lightest of breezes ?
    Does a starving man, reject the most rancid morsel of food even in the full knowledge that it might be poisonous enough to kill him ?
    My desperation knows no bounds.
    I would do what I could because a chance of a lifetime might give me a lifetime worth living.

    Journalist : Do you want to end your life ?

    Patient R : I want to end my life, not because I hate life but because I love life.
    What could be more painful to have a life you love taken away from you ?
    Some time ago I experienced a dream like no other.
    I am in a place and time that I cannot describe, so still and calm. Everyone is listening, yet no-one is talking.
    At length I hear two scribes conversing. I hear one saying to the other…… ‘’Cancer, that goes on that wall over there; the Great Scribe himself is coming down for that one….’’
    ‘’What year ?’’
    ‘’That will be it then, when all cancers are treatable ?’’
    ‘’Yes, seems like it; taken them long enough !’’
    I make my way towards a scribe and ask him about M.E.
    ’’M.E. !’’
    He looks at me with a wry smile before his engaging eyes are followed by mine as he turns his head towards the wall.
    There on the wall is a junior scribe etching the words CURED.
    How I wish that was my first and last dream.

    Journalist : Did it come with a date ?

    Patient R : 201...I can’t see the last number. I have tried to recall this dream so many times. Was it a three, a five, an eight ?
    Last week as my child played with her toys I slipped into the next room.
    I sat as muffled cries washed over me, unaware that with stealth like curiosity my twenty month old daughter, my beautiful Sasha, was now upon me.
    A little girls hand gently stroked my cheek with a tenderness of gentle, soothing silk.
    I looked into her moistening eyes and felt like the whole of humanity embracing me in a blanket of infinite love.
    The truth is unfolding, word by word, the time is near.
    The time is near but the days of my life are so very far away.
    God speed to us all.

See more popular forum discussions.

Share This Page