The Reality of Severe ME

Linda Crowhurst

September 1st 2007

The recently published NICE guidelines (Aug 22) on "CFS/ME"are shameful, they ,offer nothing to true ME sufferers.

ME; it is waking up in intense unbearable unbelievable pain for 14 years and knowing it's going to probably be the same forever not because it has to be like that but because it is being manipulated like that.

Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before.

I am never unaware of the range of symptoms that rage through my body , and are over ridingly dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet,
toes , fingers, eye lids , scalp the souls of my feet, the tip of my nose , my eyebrows even.

They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations that flow and ebb, expand and contract, and irritate beyond belief. My throat hurts, my eyeballs are swollen and itch , prickle, burn, throb , unceasingly,

My ears hurt to touch inside and out and noise, even a whisper can be excruciatingly loud and painful. Street noise, cars revving, doorbells, telephone, dogs barking,conversations at normal sound levels , all can torment me. The screeching sound of knives and forks on plates, the sound of people chewing even are exaggerated by my hyperacusis .

Any regular sound is intolerable such as a clock ticking, a newspaper rustling, a plastic bag being opened, or someone banging, a lawn mower ,a hoover send out devastating sound vibrations that I feel not only in my ears but in my whole body as pain. I become completely alienated from the world I seemingly and supposedly exist in.

I cannot bear to see people because they exhaust me with questions and conversation, with thudding foot steps, loud voices; they irritate me with their insensitivity and unawareness of my hypersensitivity, and hurt me physically - a hug or a pat on the back can be like a huge blow.

Light is intolerably bright, television and computer screens hurt my eyes, reading anything causes my brain to somehow overload so that I cannot receive or process information . Written or verbal descriptions both have the same affect. Letters jump around the page or make no sense or shape at all.

I stare a lot because it is too painful to focus. I say yes or nod when I cannot even understand the conversation because it is making no sense and my mind has become a fog of nothingness.

My head has a huge pressure on top with the deepest of throbs that incapacitates me completely physically and mentally. I often feel as if someone has driven a wedge down the centre of my head so there is no awareness inside it where I should be able to think perceive visualise imagine.

As I lie down I feel not only my head throbbing in unstoppable pain waves , but also my hands, my feet, my calf muscles, my face , my lips, my whole body is actually throbbing in unison.

As I lie down too weak to sit up any longer, my muscles spasming and seeming like jelly too insubstantial to hold my back upright, I find that I cease to function in even the most basic of movements. I cannot move my fingers. I cannot move my legs or my arms. i cannot reach the glass of water by my bedside despite i am gasping with thirst and my mouth is parched dry. My eyes are dry too, the tear film will not stay covering it so that moving my eyeballs is like rubbing them with sandpaper. Often it seems as if i am looking down a dark tunnel. I do not have full vision.

As I fall into sleep or near sleep mode my whole body ceases to move completely and totally. When I sleep I am still semiconscious for a lot of the time, the pain in my body penetrating my awareness or tormenting me with lucid dreams in Technicolor. In the deepest sleep I might feel innerly peaceful but then struggle to reawaken.

As consciousness arises I discover I cannot move my eyelids, I cannot open my mouth or speak to call out for help. My breathing is uneven and difficult with my diaphragm muscles struggling to move evenly and properly. My whole body pain has intensified to a vast degree . There is no possibility of movement of any kind. There is no response to any voluntary command to move. My whole body is an immovable throb of burning pain . My face has become palsied. Whole areas of my skin have become numb, particularly severe is my left side,: especially my left ear neck , face and arm,though sometimes oddly enough it switches so that my right side is worse. I have left sided head pain which is intensified greater on that side, for it is still present on the other side too. My lips are numb , my nose is numb , my eyeballs feel numb and grotesquely enlarged. I cannot even move my littlest finger let alone my hand. My feet are numb and my limbs are cold.

I lie like this with my bladder bursting, desperate to go to the toilet yet unable to call for help and unable to bear being touched or moved. Any attempt to move me will cause me to spasm and go into such agony that I cannot tolerate it. And so I wait. i wait and wait until touch becomes more bearable, till speech becomes possible, till fingers can be moved and limbs manipulated and knees will lock so that i can hopefully sit then eventually stand with support . The wheelchair waits but motion brings new difficulties. standing brings dizziness and black outs, Motion brings vibration and impossible irritation .

Once I have moved a little I may be able to move a little more, but the pain never ever goes away. It is constant in my life and everything i do is filtered through this experience of pain, numbness , muscle dysfunction and acute hypersensitivity. No activity or action is enjoyable physically.

There is no position that does not hurt.

There is no seating that is comfortable, the pain does not miraculously go or decrease because I lie down - I am in physical discomfort to physical torment every moment in every position.

On top of this general all over intense pain i have a damaged hip from a bad osteopathy experience, i have a damaged cartilage in in my knee but my body is too weak to be operated on and my drug and chemical sensitivity plus my sleep paralysis and breathing difficulties make an operation impossible, I have severe period pain, I have painful, tender to touch, throbbing guts and IBS type symptoms, I have a damaged lower back and recently I have hurt my shoulder.

I have food sensitivities and drug allergies, I have all over body spasms, i have dental work that I am too ill to have done, I have low level thyroxin, I have low cortisol levels. I have had severe anaemia for the last 2 years . I experience hypoglycaemia regularly. I feel ill all the time and I feel worse after minimal effort.

I have been told I have less than 20% functional ability at best and less than 10% at worst. I have a severe and chronic neurological disease that is acknowledged by the World Heath Organization (WHO) at ICD10.9.3.

I am unable to manage without physical assistance and have to live in silence and stillness with very little outside contact. because i have such little energy and such severe symptoms. I regularly burn myself because i cannot accurately tell the temperature of hot things such as bath water, hot water bottles. i fall over often and bump into things because i have poor balance, poor spacial awareness and proprioception, poor coordination and I get dizzy.

My muscles simply do not work properly. I drop things. I often and daily cannot hold things, like knives. forks, pens, telephones, All my
cups and cutlery need to be light or they hurt me to lift.

Standing is difficult and hard to explain why , unless you understand the orthostatic intolerance present in ME. My symptoms worsen after any exertion and I completely run out of energy and have to go back to bed.

Walking varies from completely impossible to severely limited . I have a wheelchair for indoor and outdoor mobility yet it is still often unuseable because of the complexity of symptoms I experience.

Although i live in a beautiful place I have never been able to walk to the village shop, the post office ,go cycling, go to the pub, the many restaraunts, the church services, the cinema, the theatre, go bird watching, go on the local sandy beaches, .

Having ME means you lose friends and it is virtually impossible to make new ones because contact is so hard to maintain and normal social events are a torment that become impossible to participate in. You cannot join in family occassions or celebrations - and in the end people stop inviting you, they stop expecting you and often they blame you rather thn continue to reach out in new ways to understand the illness. Holidays are impossible because of poverty, difficulty with travelling, unsuitabley hard beds, potential intollerable environmental noise, chemical sensitivity, and inaccesibility to everything.

Visiting others is another virtual impossibility because of multiple sensitivities and just feeling so very very ill al the time .Planning anything is utterly impossible because you never know from moment to moment what you can physically manage. and keeping appointments is extremely unlikely.

Why then do I have to keep reapplying for my Disability Benefit every three years, Why did I have to fight and complain about wrong assessments to get my home properly adapted? Why did I have to endure condescension and dismissal by a neurologist not interested in my neurological symptoms?

Why do I have to accept psychiatrist' s recommending inappropriate therapeutic techniques as 'treatments'?

Why do I have to accept the denial of the WHO categorising of my neurological disease in the NICE guidelines and the promotion of a biopsychosocial psychiatrically motivated approach to my disease, when it is not a mental health illness?

Why do I have to accept a complete lack of biomedical clinics and a derth of biomedical clinicians in dealing with my disease?

Why is there no government backing for physical research? Why are People who have vested interests in insurance companies allowed to be advisors to DWP regarding guidance in my illness?

How can the psychiatrists be allowed to define inaccurately my disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME? How can the psychiatric lobby get away with changing the name to CFS to ensure this wrong focus? How can the neurological nature of this illness be dismissed and people who have neurological symptoms be denied a proper service because of them? How can inappropriate therapeutic techniques be promoted by NICE when they are not wanted by people with ME as they make them more ill and disabled potentially if not actually?

Why is the ME community so divided when the issues are so clear?

People with neurological Encephalomyelitis are physically ill.

They need biomedical research and new biomedical treatments developing. They need physical research to understand the disease and develop a true identification process. They need accurate diagnostic criteria, accurate physical diagnosis and prognosis.

They need psychiatry to be placed back where it belongs which is not as a first line involvement with people with ME. They need a Benefit system and an NHS service that is not marred by vested interests. They need GP's who understand that ME is a physical illness. They need full body mapping and proper in depth tests that will show the wide range of serious dysfunction in the many different systems of their bodies. They need a full biomedical report. They need validating, supporting and valuing. They need new aids and equipment developing that can take into account their very special needs due to acute hypersensitivity.

They need easy access to benefits and aids and equipment and services. They need care staff and medical staff and anyone involved in offering an ME service to be properly trained and aware how best to work with people with such complex symptoms.

They need to be seen and heard and understood. Services need a complete change and need to be underpinned by sound biomedical research and knowledge.

If people with ME and all people who are involved with ME spoke and worked in unison we might actually start to get somewhere.

The worst thing about having ME is not the vast array of unending symptoms , that there are no drugs to alleviate, it is the isolation caused by people , both medical, official and in society including families, who do not understand this is a serious and severely disabling physical illness.

It is having to live in fear that you wont get your benefits. It is having to accept you will get wrong treatment or poor treatment or no treatment often ,.

It is knowing that you are physically ill but here is no appropriate treatment for you and there is not going to be unless the untruth pushed by the psychiatric lobby is drowned out and shown to be false.

It is knowing that there are few clinicians if any who can actually help you. It is knowing that you have not had proper tests and that you are not going to get them even though there are tests that could be done.

It is knowing that the psychiatric lobby is downplaying this serious neurological illness and saying it is a mental health issue and no research or tests are necessary.

It is knowing that you need a proper diagnosis and medical involvement to gain the benefits , but if your GP or clinician or benefit agency doctor is psychiatrically oriented you are simply not likely to get the right help and support that you need.

It is knowing that as your neurological symptoms worsen that there are no neurologists who are willing or interested to help you locally and you are too ill to travel to see someone anyway.

It is knowing that going to hospital for tests is most likely a waste of time and energy and will lead to disappointment because they are not doing the right tests.

It is knowing that if you need drugs for some other condition they may well react badly because of your ME so you do not know if you dare take them.

It is knowing that the psychiatric promotion of the biopsychosocial approach is so successful that it is wrongly influencing doctors and nurses who may have to treat you one day and will not understand how very ill you are and will not therefore understand how to treat you properly.

It is being too ill to speak or read or write or type or fight for what is your right.

It is not knowing who to turn to for help advice support and alleviation of symptoms.

It is knowing people are being made worse by psychiatric interventions , even dying from them .

It is seeing the psychiatric lobby gain footholds in the institutions that should be supporting people with ME and knowing they are are gaining ground and power.

It is knowing that you are really ill but you have not got what you need and there is little hope of getting it.

It is understanding why people might commit suicide in this climate of disbelief and dissemination of falsehoods about the true neurological nature of ME.

We need to stand up for the name Myalgic Encephalomyelitis. We need to stand up for proper and full criteria , such as Ramsay defined or Canadian defined or hopefully even clearer more up to date but accurate criteria, to identify this specific illness. we need to stand up and demand biomedical research , biomedical input and biomedical clinician involvement.

We need to stand up for the truth of our disease.

We need to speak out the truth of this devastating physical illness and we need to be strong together.

We need to demand that the focus on fatigue be stopped and stopped now.