The reality of living with severe Myalgic
Encephalomyelitis

2 September 2007

Linda A Crowhurst,
Severe ME sufferer

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.

Competing interests: None declared