want to speak today about some areas of concern that I have
encountered in relation to the National Health Service's
responses to a young person presenting with severe M.E.
symptoms. I have tried to restrict my points to purely NHS
issues but as you will hear, it is very often the interface
between the NHS and other service providers that is very
problematic for people trying to live with M.E.
for example General Practitioners do not believe in your illness
and won't credit you with the need for certain services, this
will make it virtually impossible for other service providers to
get involved as a referral must be in place first.
would like to list just a few of the representative problems.
Where longer anecdotal evidence is included it is with the
single purpose of hoping to curb inappropriate practice to
people with M.E.
first area of difficulty I encountered was that no one could
identify what was wrong with my health. One of my very first
symptoms was extremely painful shoulder joints. On waking my
shoulders were so stiff and sore that it would take 20 minutes
of incremental movements to move them enough to push off the
duvet. My arms were very weak and would also `dislocate' very
My GP advised me to "Give up racquet sports and exercise
to improve your general fitness".
This was disastrous and I
think has consolidated the condition.
was given steroid injections directly into the shoulder joints
and told, "we don't know how steroids really work but they can
reduce inflammation in some cases". I had more pain and
terrifying hallucinations. I was also prescribed many different
and powerful anti-inflammatory drugs associated with
rheumatology and feel these may have caused the damage to my
addition to the steroids and anti-inflammatory drugs I was
given high doses of the contraceptive pill for severe menstrual
problems and told it would all improve when I had a baby. And in
the same year began a course of daily antibiotics, which lasted
for two years, for secondarily infected acne. I was also
prescribed temazepam, which caused blinding headaches and
vomiting, at low dosages.
These were all the
of kindly and
non-judgemental GPs who were trying to help but sadly lacked
I think the NHS is actually spending a lot of
money making people with M.E. more ill.
The first diagnosis of my muscle and joint pain
by a rheumatologist was "hypermobility". I was told that my
joints hurt because they were "over-extending", and that when my
skeleton finally stopped growing the joints would tighten up, be
less mobile, and they'd hurt less.
I should just go home and
wait until I was 24. (That was 20 years ago and I am still
waiting for the pain to lessen).
The rheumatologist ended the
consultation by calling in all the student doctors and saying:
"She's hypermobile" – and forcing me to bend over backwards into
the crab position saying:
"Look, she can say goodbye to herself
My back was very tender and painful and I couldn't bend
forward properly without pain for weeks.
During the first 8 years when I couldn't get a
diagnosis I was trawled around 4 rheumatology departments, 3
general physician outpatient departments and finally 2
psychiatric assessment units. All of which was completely
inappropriate for me and a huge waste of NHS resources. In that
time I experienced a lot of hostility, anger and disbelief (from
health care practitioners). I was also humiliated and, as I was
quite young, found this sort of attack on my personality very,
very undermining. I was also a single
person with not a great support network and these sorts of
accusations about whether or not I was ill were really
disturbing, and caused me a lot of distress.
I began needlessly examining my personality and
wondering if I had some great flaw within, which I ought to look
for and resolve, whilst still getting more and more physically
sick. This was a really upsetting, worrying and disturbing
episode in my life lasting almost a decade. I didn't know how to
go forward with my life when I knew something was dreadfully,
dreadfully wrong. My arms and legs weren't working: I went to
bed one night and when I got up the next morning they weren't
working like they ever used to. There was a sense of dis-ease in
my body that I'd never experienced before and yet I still had to
proceed as if nothing was wrong.
When I finally did get a diagnosis it was only
through travelling to a GP who had 40 years of clinical
experience of M.E. I couldn't get a diagnosis locally.
I'm sure the lack of an accurate diagnosis is no
news to most people listening. I would, however, like to
emphasise that, even after 8 years, when you finally receive a
diagnosis it's not much use to you. It is a great relief to have
an explanation; and confirmation of what you've been dealing
However, if every health professional you subsequently
meet – be that for acute care in an A & E unit or resources from
a wheelchair assessment advisor – if every health professional
you meet then doesn't believe in M.E. it's of very little
practical value when you seek services. Worse than that, it can
actually be detrimental to the service user–service provider
relationship to mention that you have this condition.
the M.E. diagnosis comes up, all the negative responses ensue.
Having exercised and worked through the illness for 8 years I
then had to give up my career and retire at the age of 30. At
that point I needed a wheelchair as I couldn't walk about and
wanted to get out of the house. But I was only allowed to have a
manual wheelchair. As my arms were more severely affected than
my legs and I was living alone and had no one to push me it was
useless. I was told I would only be allowed to have an electric
wheelchair when I was completely incapable of walking. Now I am
completely incapable of walking, I'm too ill to go in a
wheelchair of any kind.
Concurrently with these mobility problems I found I was unable
to prepare and cook meals, shop, bathe myself and clean my home.
My GP was very supportive of my own appraisal of my difficulties
and made an immediate referral to Social Services. I was offered
6 hours of home-care per week. Unfortunately lack of
understanding of M.E. by this service-provider entailed this
assistance only being made available to me before midday. As I
was too ill to have anyone in my home until late afternoon I was
only able to take up 2 hours service provision per week.
Consequently, I often went to sleep ravenously hungry at night
as I couldn't get to the kitchen and lost almost 2 stones in
weight without realising. I was restricting my fluid intake to
almost zero because I could not rise from my bed to go to the
bathroom. Female urinal bottles (and someone to empty them!)
would have been a lifesaver in this situation.
Years later I learned that home care
was available later in the
day but I was thought to be of low priority in both
need/dependence and risk (There is a legacy of home-helps only
working mornings from when the concept was first introduced as
In December 1993, after 6 years of struggling in
this way and an acute incident where paint and gas fumes entered
my flat, I collapsed outside whilst trying to escape the
premises. I cannot praise the paramedics too highly. They were
gentle with my body, slow and careful in assessing the situation
before taking action (i.e. getting me up from a concrete floor)
and completely respected my own explanation of my condition. I
was in shock and once admitted to hospital the treatment I
received only compounded the massive adrenalin surges to which I
am prone at the slightest physical or mental stress.
Health professionals were mostly either
dismissive or really angry towards me. I was told that "chemical
fumes at such dilutions could not possibly produce such
effects". I was treated variously as `crazy', a fake, and a
time-waster. I was admitted to a ward where the chief consultant
soon instructed nursing staff to remove the commode from my
bedside and not to assist me to the bathroom. He challenged me
repeatedly to get up and walk, often in front of a full
complement of student doctors. At this time I was too
debilitated to do more than press a buzzer with my thumb –
needing to be turned in bed and assisted in everything that I did. I was very afraid that whilst my body was in such an
acute crisis my heart muscle might become as weak as my skeletal
I obtained a letter, from the GP who had
originally diagnosed M.E., which stated:
There can be no question that this patient
genuine diagnosis of myalgic
encephalomyelitis due to an enterovirus. She had repeatedly
positive hybridisation probes to enteroviral RNA. As with
polio there is a risk of cardiac involvement. No doubt she
will be thoroughly investigated in this respect.
Again, with polio as an example, enterovirus
spreads and condition worsens with injudicious physiotherapy.
This should be minimal and paced carefully.
chief consultant still insisted that I "Play the game".
I should demonstrate my co-operation by standing up and walking
and thence submitting to a full battery
of physical and psychiatric tests and assessments.
their credit the two nurses responsible for my care refused to
follow the consultant's instructions and continued to provide
full support. (I feel I must mention that the consultant was a
Briefly, I did not feel safe and discharged myself from the
hospital via the kindness of an almost total stranger who was
able to borrow a padded reclining wheelchair. The following day,
a district nurse urged me to realise that I could not possibly
survive alone in my home in such a desperate state.
was quickly admitted to a large and bustling General Admissions
ward at a different hospital.
soon as the muscle weakness would allow I began to try to turn
myself once or twice during the day to relieve the pressure on
my hipbones. By the evening I could no longer manage this and
would ask for help from the nurses. They would become very angry
and say that I could do it myself because they had seen me do it
before, So, after turning me in bed, when the manoeuvre was
already completed, they would then jab their fingers into my
legs. When I came out of hospital a month later I had little
units of four-finger bruise marks from the top to the bottom of
my legs. As my body was so tender that I could not bear even a
sheet over me without a bed-cage these bruises were painful in
One of the main
symptoms of M.E. is sleep disturbance, yet in addition to the
usual noises of a busy ward, the staff used to play cards and
share a takeaway meal on one of the empty beds at night. I
became unable to sleep for longer than 12 minutes at a time, and
took me over a year to re-establish my sleep patterns (and then
only with medication). As a consequence my levels of adrenalin
were abnormally high for 18 months, which made me really very
The main response to severe M.E. at every level,
and I mean every member of staff including doctors, has been
hostility and anger. Because I was young, alone and very ill I
feel I was more vulnerable to abuse. When I was too ill to speak
I had no one to speak to professionals on my behalf and defend
After 3-4 weeks the doctors said that there was
nothing they could do to help me and they "were not interested
in the aetiology of this illness". I was told that I should
return home as they didn't know what to do with me and my health
was probably being worsened by the conditions on a general ward:
I was in one six-bed group on a ward of 30 beds
with only half-height partitions between each section. There
were several televisions and a radio playing at once. The
television in my own area was on for eighteen hours a day at
high volume. Neither staff nor fellow-patients understood the
need for quiet and the pain and physical deterioration that
noise causes me. It was suggested that I put on headphones and
listen to music. This is just a different sort of noise, but
actually piped into your ears rather than just within the
room! There was no understanding of hyperacusis at all.
I had problems with extreme light sensitivity.
With fluorescent lights overhead, open curtains and bright skies
I had to wear dark glasses and, a peaked cap. There
were lots of problems with the number of chemicals and perfumes
in use, particularly as I had just experienced an acute toxic
overload from the fumes in my home. I couldn't get any food,
except salads, that I could eat without being violently sick and
having severe diarrhoea, 5-6 times a day. I was sweating
profusely day and night and losing about half a stone a
at that point. All of this was just seen as me being very fussy,
"precious" and controlling, by both staff and patients.
I'd never heard of severe M.E. I requested an HIV test (I was
not even in an `at risk' category), because I could think of no
explanation for all of these alarming symptoms. I felt I might
I was too ill to participate in the Social Services `all
care-needs assessment' I was discharged without a care plan
(three days before Christmas, to an empty house with just 3
care-calls per day.).
life was wretched. I needed food every 2 hours. I was only
sleeping for 12 minutes at a time. I felt demented by sleep
deprivation and began to visualise suicide methods.
Because my (new) G.P. would not agree that I needed overnight
care ("You're managing fine") I was not able to acquire Higher
Rate DLA. I was alone for 21 hours a day, unable to move, and at
night my fear was overwhelming. Care calls were erratic and I
was often left without food.
was 10 months before I gained sufficient funding for 24-hour
care from a "cowboy" agency.
has taken 6 1/2 years of my life, since 1993, to achieve
the appropriate levels of funding to pay for 24-hour care from a
reputable agency and begin to stabilise my basic care provision
(food, toileting and sleep) and we're not there yet.
This could all have been avoided if only adequate
care arrangements had been agreed and funded before I was
discharged from hospital.
2000 The NHS and living at home today;
I have been unable to find a supportive GP for
over 10 years.
My current GP has not made a home visit for over
4 years. It has been made clear that as this costs roughly £ 100
per visit I will be removed from the register if I continue to
ask for home visits.
Before I registered with this practice the GP
agreed to give a red cell magnesium test if I would pay the
laboratory fee. He has refused to give me the magnesium
injections. When asked why he took the blood samples if he did
not intend to give the treatment indicated he told my relative;
"I was only humouring her."
My GP took me into the practice because he "liked
the interesting patients". I asked what would happen if I ceased
to be interesting and was told: "I'll pass you on to one of my
colleagues in the practice".
I have received repeat prescriptions for stomach
medication for 4 years without a consultation.
I cannot get a cervical smear test done at home
even though I am advised that I need annual checkups. The
general practice has continued to send reminders for me to
attend at the surgery for 4 years despite knowing of my bed
bound condition. Cancer awareness leaflets are also sent and I
worry. Recently I have been asked to sign a disclaimer to
that I have declined their services.
I receive no physiotherapy and am unable to
straighten my legs due to contractures.
I receive no support with pressure care
I have had no dental care for 8 years and have
yet to locate the community dental service and optician.
is not acceptable to tell severely ill M.E. patients "There is
nothing we can do to cure
you so we cannot help you. Off you go. You'll have to get on
I would really
appreciate 2 domiciliary
visits per year involving
advice, support and
reassurance about my healthcare worries
Other conditions can
arise and masked by
the M.E. but
everything attributed to
I have learned
testing that I have poor adrenal function and hypo-thyroidism
a GP who will
explore and treat this.
spent 2 1/2 hours being 'grilled' by
an NHS wheelchair assessment advisor about my
needs. She completely
without head support
was sent. Nor
it have raised leg rests.
cannot sit in it.
It is never used. I am
very angry about
mobility-impairment in people with M.E. is an area urgently
in need of a revised approach by the NHS.
Health care professionals generally believe
that people with M.E. fully recover after 2 years rest and
pacing. When severe M.E. sufferers do not
conform to this picture
professionals often respond with anger. By this entrenched thinking we
are made into a group
Crisis care for acute
and in residential centres.
I feel great relief, and
appreciation towards those health care
encounter who have the
admit: "I don't understand your
illness but I respect
your opinion and value
severe M.E. need to be supported to retain as much of
their health as they
can for as long as possible. We don't
experience remissions. Once
I lose an ability it never comes back.
significant percentage of
us deterioration is a one-way
The NHS should aim to
avoid making people more ill.
the clinics and hospitals in which I have spent time the most
respect and consideration was always shown to the person most
likely to die or most visibly impaired. M.E. was not seen as
life- threatening and not considered to be a `serious' illness.
In 1999 Dr. David Bell, a researcher and
experienced clinician with a vast caseload of field experience
in M.E. gave a lecture at Christie's in London entitled: "M.E.
and the Autonomic System". He stated that: "People with M.E.
have less activity than people, dying of HIV/AIDS, who are
within two months of death." Dr. Bell was explaining that quite
moderately affected M.E. patients are less able and
active than terminally ill AIDS patients.
The NHS needs to be educated about this patient
group: A group of people who are living at a lower level of
functioning than the terminally ill but who must continue in
this way for years, often decades.
For the severely affected M.E. sufferer
management of one's health and care at a daily level
is often an unsuccessfully waged battle. It is impossible to
stabilise one's condition and therefore deterioration is ongoing
When Sir Kenneth Calman announced the formation
of the Chief Medical Officer's Working party on Myalgic
Encephalomyelitis I had just one thought: "I must tell them
That was some time ago, but I have kept my
promise to myself and people with M.E.
Compiling this testimony has cost me the ability
to write. This is another ability lost and unlikely ever to
thought it worth the sacrifice. After all, what
else have we got? It took eighteen years for me to learn that
M.E. existed in such a severe form in thousands of other people
too – and I was living with the condition!
am hoping that this sounding board event will prove a more direct route to accurate information for NHS professionals and that it
take a further 18 years for them to become enlightened.
As a teacher I worked as part of the initiative to
combat racial prejudice in schools. At first we tiptoed along for
fear of upsetting staff. Training courses were optional and referred
to: "multicultural awareness." This was a necessary stage in the
process, but eventually it became essential to refer to the issue as
It takes years to erode institutionalised
discrimination and prejudice, which is negative and unhealthy for
both the victim and the perpetrator. Education about M.E. for NHS
professionals needs to be: in-service, compulsory and of the highest
quality. It will need to be an ongoing developmental process, not
merely a one-off document, and include staff at every level
and of all disciplines in the NHS.
To paraphrase a well-used slogan from another human
rights movement, I would say to the National Health Service:
"We're here, it's
severe. Get used to it!
Thank you so much for reading/listening to this
This document is dedicated to my friend who is also
living with severe M.E. She is 33 years old and has been living in a
geriatric nursing home, against her wishes, for 4 years. She endures
verbal and physical abuse every day. Yesterday I learned that she is
often denied food and has been forced to chew on her bath sponge and
eat toothpaste to assuage her thirst and hunger pangs. I asked what
she wanted most. Her reply was one word, quietly spoken: