“ Doctors must be honest and trustworthy, make clear the
limits of their knowledge and make reasonable checks to make sure any
information given is not misleading or any action harmful”
|Image by Greg Crowhurst
A personal story from someone with Severe ME who has
declined and suffered at the hands of an ignorant medic who denied the
seriousness of her ME and pushed her beyond her physical capabilities
A person with Severe ME who is a member of the ME community
in Ireland has been bedbound for the last couple of years following a hospital
admission. She has suffered not just the debilitating illness Myalgic
Encephalomyelitis (ME), but she has also suffered from medical neglect and has
had a long-term relapse following a hospitalisation where she found herself at
the hands of an ME-unaware medic who did a lot of harm by ignoring her profound
symptoms and pushing her beyond her physical capabilities.
She has since been left without healthcare and services appropriate
to her severity that could help towards her recovery as well as her current
She is representative of a wider problem in the Irish ME
Community at large where people with ME, including young children, have been
left to sink or swim because nobody is coordinating the care ….. there is no
single lead taking responsibility for people with ME… people with ME mostly
fall between the cracks.
How many people with ME have experienced harm and have
deteriorated due to an admission into hospital?
The story is a compilation of feedback from the Severe ME patient over a couple of years
“I had an awful battle with my first consultant. I was
brought in in an emergency, extremely ill from a flight from Europe. Storm
Denis had started just after we landed. The air hostess had to give me oxygen
to keep me going until we landed. I was in ICU for nearly 10 days in quarantine
due to Influenza A and pneumonia in both lungs. I was lucky to be alive!
When I started to recover, my ME kicked in and I had several
conscious seizures, they happen from time to time when my physical body has
overdone it. I kick and jump, I spasm and arch and my hand can take off in all
directions. I'm not fazed by it except it uses up so much energy and puts me in
bed for weeks afterwards.
I warned the ICU staff it would likely happen and to just
keep me warm and hydrated. Last thing I wanted was a crash team pumping God
knows what into me to calm me down.
I had two episodes while there and told my consultant. He
didn't believe me.
I told him that I would need a couple more days in the quiet
of ICU just resting and then move to a private room for another 5-7 days and I
could go home self-caring and be quite well.
I gave him the International Consensus Criteria (ICC) and
lots of other paperwork and asked him to read them.
The day we got the all clear from quarantine, he assured me
there was no bed downstairs so I could have that 24-hour rest in ICU.
Twenty mins later, after he had gone a nurse came up and
said there was a room for me on the ward. She omitted to say it was a shared
I was put in a wheelchair and moved lock stock and barrel to
a ward. Bright lights, lots of noise, people chattering, lift doors opening
.... major overload after 10 days of complete silence.
Then horror of horrors, I was put in a 4-bed room with my
bed being the one everyone had to pass to get to anywhere in the ward. The
noisiest environment I had experienced in days. I was overwhelmed and so tired.
People kept asking me questions.
Tea arrived. Then something changed. Someone with a perfume
passed me by. I choked and started to cough. I coughed for 2 and a half hours
before the night sister was finally called.
My husband arrived back in. He had words with the night
sister. I was eventually moved to a quiet 2-bed room where I coughed for a long
time and finally settled. I slept a little and felt really scared now of what
was to happen next.
The Consultant arrived in the next morning wanting to know
what all the drama was about.
I woke that morning unable to get out of bed, my hands and
arms were shaking, and I was entirely wrecked. I told him he was a good
respiratory doctor, but he knew nothing about ME. I wanted another doctor to
take over my ME care. He was taken aback.
Dr M came to see me that afternoon and started treating the
spasms etc. It was some relief to have him there. However, the other guy was
still in charge of my chest.
On Sunday morning I said to him that it was a pity he hadn't
honoured my knowledge of my body (25 years living with ME) and scientific fact
and that this last week of spasming and unnecessary suffering could have been
He told me it was a self-fulfilling prophesy and that the
paracetamol I take every 6 hours that stop my hands from spasming are just a
When he left I called my nurse and officially signed all of
my care to Dr M. Got to stop now as I'm exhausted and am meant to be resting.
I'm home 7 weeks this Fri. Early discharge as COVID was
looming everywhere. Dr M did what he could in a few days, he gave me meds to
stop the spasming which helped.
Since I came home I cannot walk at all. I shuffle with a
zimmer but my feet don't lift. I have carers to wash me, help me to commode and
to sit me out for a few hours in a chair by the bed. I can do very little. I'm
sleeping a lot. Seizures and spasms have returned. I have lots of other
neurological symptoms I hadn't had before.
I'm due to see Dr M soon and please God he'll find some
solutions for me.
It's a nightmare situation at the moment.
I'm 56, stuck in a room I cannot leave without help.
I cannot reach the bathroom. Bed baths and commode is my
I'm staying as positive as I can hoping this is a phase and
it'll come right, and terrified to think of the alternatives.
My husband is exhausted as carers only come for an hour in
the morning and 30 mins in mid-afternoon. I have to live in hope.
I slept for most of Saturday & Sunday, a little less
yesterday and today. It was the quietest birthday I ever had. I have a close
friend who came over. There were just five of us present with my son providing
music. It was the most beautiful present I could have had! After, we had a
lovely lunch and then I went off to sleep. We did the cake in the evening when
I’d had a few hours sleep. Not everyone’s idea of a birthday party but perfect
for me. It gave me a great lift as I’ve had no visitors at all in the 19 weeks
I’m lying here.
I’m still not walking. I can stand for a few minutes holding
on but not independently.
I have started LDN, had a reaction and have reduced the dose
hugely. I’m also on Thybon (T3) gradually increasing the dose. I think I get a
little energy sometimes but it’s like the firecrackers at Halloween, gone in a
flash. However, I’m taking a little hope that it happens at all.
I still get occasional small seizures, but they don’t last
long. I’m on meds for those so it’s only when I’m very tired. My hand or leg
could take off shaking for 10 - 20 minutes and then stop.
I generally thank God that I’m in good enough form.
Carers twice a day and poor hubby does the rest. Still
waiting for my emergency needs based medical card! Every week, it’s going to be
next week. Crazy situation!
It’s going to be a long haul to improve at all. Spoke with
private O.T as Community one is waiting on medical card to visit. He reckons
we’re going to have to adjust our entire lifestyle downstairs which will mean
putting on an extension. I’m currently in the Conservatory.
No shower on the ground floor so no shower since 20th March.
Also, I have to use a commode as I can’t walk to the toilet off the
Life has changed, changed utterly
I’m pretty wiped out at the moment. I’m still in bed 99% of
the time. Caregivers wash me at the bedside, and I get to use a commode. That’s
my 1% out of bed. I have had a continuous list of small complications that zap
the small bit of energy I recover.
My legs can move, I can lift them up and down gently, but I
cannot yet walk.
This is my gift from my hospital stay in February and March
this year. A doctor didn’t believe M.E. is real and pushed me beyond my limits.
20 weeks lying here, without a shower, and not knowing what’s around the
Thank God I’m in good form, I have faith which is my rock
like it’s never been before. I have a wonderful husband who will do anything to
help me. I have nice, gentle caregivers who treat me with dignity. So it’s not
all bad. I can feed myself. I can read a few pages of a book. I can write a few
lines like this on iPad but not a lot else at the moment. I guess I would be
classed as severe at the moment, but it could be so much worse. I have hope
that sometime this year, I’ll take a few steps.
My wish is to enlighten every medic, nurse, caregiver,
physio, occupational therapist, radiographer, and everyone who deals with folk
with M.E. of our needs, of how hard it
is to explain that because you look ok, you’re not ok. That M.E. is a serious
condition that destroys lives, patients, and families.
If someone gives you an article to read to understand their
health issue better, the decent thing to do is read it and believe it.
It's now 14 months since I came out of hospital. During that
time, I have been confined to bed for 22/24 hrs. I sit out on a recliner, but 2
hours still exhaust me. I have carers three times a day.
I have no shower downstairs. My bed is in the Conservatory which
is now my room. I have daily bedside washes which are mostly done by carers as
I have not enough energy.
My hair is washed in a basin at my bedside table. I use a
commode in the same room. We are currently speaking with an architect to see
what changes need to be done to our home.
Initially, I thought recovery would take 6 months at most
and then a slower pace of normal life. How wrong I was!
My feet refused to walk. I would stand briefly with a Zimmer
and do basic movements to ensure my joints did not stiffen but that was all I
could manage. A standing hoist is used to move me from bed to chair or commode.
I realised that when my system collapsed last year, there
was something left missing as I started to recover slowly. Messages were not
being relayed to one of my feet in particular. It had all motor movements, but
it had lost the memory of what it had to do. I devised my own programme of
sensitisation of my foot. I scratched it, I stroked it, I used soft and rough
materials on it. I stood on water droplets, stood on different textures.
We (Carer and me) tried rudimentary movements - high soldier
step and push forward. Each little increment was paid for by exhaustion.
Now at the end of May, I can make about 3 full steps with
the Zimmer and my carer holding the Zimmer tightly.
My foot is still very shaky about taking my weight as I move
my other foot but it's gratifying to have got this far.
I reacted badly to LDN late last year, swelling up like the
Michelin man. Finally, after 4 months of daily diuretics, then super diuretics,
very painful massage and decaff green tea, most of the swelling is thankfully
I try and stay in touch through social media on my iPad with
family and friends. I join webinars or Zoom meetings on things that interest me
with no picture so I can fall asleep if necessary.
In order to keep my spirits up and my personality as me, I
have to have contact with life.
I have a perpetual thirst for learning so I know some days I
use valuable energy listening or learning something new, but it keeps me me.
I cannot concentrate for more than two pages of a book. I
fall asleep during the audio books. Can't tolerate T.V. or radio with lights
My husband takes over from the carers every day, organises
food, the washing and the house etc. It's unsung heroes like him that no one
heeds. He uses the time in the evening when the carers are here to catch up on
In spite of spending many days the same, there's always
something happening. I don't know if I mentioned before that as I left
hospital, they applied for an emergency medical card for me. It took 20 weeks
to arrive! We had bought our own profile bed before I left hospital luckily. The O.T supplied the hoist early on as it was
impossible to get me safely out of bed for commode etc.
After the medical card arrived, I got a decent commode, a
recliner chair, a bedtable, and a wheelchair. These made life much more
Being in bed in the middle of a pandemic means that aside from seeing the Consultant every few months, I am very much at the mercy of my GP. That's another story.
I have full body seizure/spasms where I'm wide awake but unable to control anything going on. Usually after overdoing it, getting cold or being emotionally exhausted. These can last 20 mins to 2.5 hrs. Lately I have finished in a state where my arms won't move no matter how much I will them. This can go on for some time. I can only wait until movement comes back itself. Quite surreal. I can still speak thank goodness and ask for drink with straw. I have my google echo dot set up to phone my husband on command. It works as long as my voice is strong enough.”
~ Person with Severe ME
|Image by Greg Crowhurst
There is no knowledge about ME among
Consultants/Specialists in Ireland
· If a person is
referred to a consultant, the common experiences are as with a GP, i.e., there
is no knowledge of ME and how to care for the patient.
Cardiologists and Rheumatologists etc. largely dismiss the aspects of ME which
sit within their specialities as they do not meet the threshold for
intervention according to their clinical guidance.
· Without the
involvement of a clinician who understands the complexity of ME as it affects
all systems and organs, the attempts of one speciality or another to address
one aspect of a presentation or ‘a symptom’ can lead to further imbalance or a
further experience of ‘nothing to see here’ and dismissal.
The HSE’s often stated response that people with ME are
given ‘symptom management’ can reasonably be stated to be an act of neglect.
The ME Community is an unusual one as they have no HSE ‘Champion’ or even
anyone with an interest in ME that the HSE can identify.
· It is hard
enough for those assigned to a disease specific Consultant or one knowledgeable
about their illness to overcome the barriers living with disability
provides. Having ME adds a further
barrier and inequality, as many have no access to a consultant, and for those
that do, there is no knowledge of the underlying pathophysiology which can be
emphasised to support an application as listed above.
· Access to
support in the home, care, adaptation grants etc all benefit hugely from the
support of a consultant, but for most with ME, this support is unavailable.
support for those who cannot leave their homes is absent.
we have met only two Consultants who ‘speak the language’ of ME and have some
grasp of the complexity of the disorder and the dreadful toll it takes on the
life of the individual sufferer and their families. But they are not ME
consultants and have other roles which takes from there potentially being a
knowledgeable ME Consultant available fulltime. With the numbers with ME it is
not practical that we continue to do without ME champions in each CHO.
· How many
people with ME avoid hospitals and acute services as they do not believe the
investment of their energy to attend or be admitted will pay any dividends?
· How many
people with ME have experienced harm and have deteriorated due to an admission?
· Hospitals too
often evidences a dismissive response from staff, a denial of the illness or
even any awareness that it exists and denigration of the person with ME is all
too often a reported outcome.
- There is no
national policy on ME - In the absence of clinical guidance on ME, acute and
community staff have no lead, nowhere to turn. It is recommended that a
national guidance document for ME should be developed by the HSE to provide
information and guidance regarding the condition with information in relation
to the care and support available through the HSE to sufferers.
- There is no
recognised set of criteria used by the HSE - In the absence of clinical
criteria on ME, acute and community staff have no lead, nowhere to turn. – It
is recommended that the HSE adopt robust criteria such as the International
Consensus Criteria, 2011.
- There is no
training in Med Schools
- There is no
education among professionals
When will the HSE & Government become sufficiently aware
of the harm being done to adults, and to children and families across the
country who are suffering due to the lack of knowledge of ME?
Until there is an objective framework of standards, based on
a sound and quality evidence base, there can be no accountability.
How can the HSE hope to address a situation if it does not
know what the territory is?
Qualitative and quantitative data are required for the HSE
to understand the complexity of the current situation re ME.
The Reality of Severe ME in Ireland
& an Important Message to all Doctors
Severe/Very Severe/Profound ME can be a very
frightening illness, not only for the family and carers of the severely ill
patient, but also for doctors who are unlikely to have any previous experience
of these most severe presentations.
Acknowledge the serious and severe physical
illness underlying the person’s symptom
People with ME, especially those with
Severe/Very Severe/Profound ME, are often excluded from medical care because
they cannot come to a clinic because they struggle to get out of bed or cannot
move at all. It is particularly important that GPs pay attention to these
people and make themselves available to visit them at home.
People with Very Severe/Profound ME are barely
alive and can completely deteriorate from complications when their condition is
neglected or badly managed by ill-informed ME-unaware doctors.
Treat the person with respect on all levels;
respect for the way interaction occurs, the physical and the cognitive
limitations enforced on the person by their severely disabling multi-system
Honour what the person says regarding their
physical and cognitive needs.
Listen to the person and only interact at the
correct time in the correct way.
Understand any hypersensitivity issues
(chemical, drug, touch, noise, light, movement, motion, food); never ignore,
undermine, negate or belittle them, recognising the danger of the ordinary
environment as real, not just perceived.
Understand and comprehend that the person with
Severe ME is not experiencing the world the same way as a well person and
cannot fit into the demands and obligations imposed on them by others, easily
or at all.
Maintain a flexible, knowledgeable, sensitive,
compassionate, non-judgmental, person-centred rather than goal -oriented
approach at all times.
Be aware of the after impact of any interaction;
something once achieved cannot necessarily be achieved or tolerated again or
regularly or increased.
Recognise the irrelevance, unhelpful and
dangerous nature of a psychosocial response and interpretation of Severe ME, a
physical disease. A biomedical response and care pathway is essential.
It is vital to ensure that you never put any
overt or covert pressure, demand or expectation to improve, upon the person
with Severe ME, nor any underlying belief that is in opposition to the truth
and severity of the disease and very real lack of valid treatment and cure.
ME is not easy to understand, help people around
you to understand it!
ME is misrepresented as Chronic Fatigue, make
sure you represent it as a physiological neurological disease!
ME is a complex disease where the most severely
affected are the most hidden and misunderstood, make sure you speak the truth
for them and call out any medic who does not recognise that!
Know that the person you care for has a physical
disease, one that most likely is not getting the medical support it needs.
Everyone deserves correct medical support and excellent care!
Adhere to a strictly defined definition of ME,
i.e., The International Consensus Criteria & Primer
Specialist help should be available for these
very severe cases. Specialist services should also be prepared to see patients
in their homes when it is necessary.
The most important thing the GP can do to keep
supporting a patient is to proactively make contact with patients who may be
unable to come to the surgery. Even if it's as much as a phone call every few
months ideally a home visit should take place.
The GP should keep regular reports, keep an
account of how the condition is affecting the patient, be aware of new
symptomatic relief the patient could try. Even just documenting how the patient
is functionally impacted by ME both cognitively and physically is so important.
The struggle to access supports is just
monumental and will make people's health worse so it is a question of actually
preventing deterioration in health.
Patients at the more severe end of the spectrum
of ME need all the support they are entitled to, particularly the benefits they
are entitled to from the state, and its incumbent on the GP in particular to
see that these benefits are suitably applied for with appropriately supportive
The GP should actually be arranging for
appropriate nursing care for such patients.
The most important thing is that the GP accepts
responsibility for the patient, believes in the patient, takes on a personal role
of continuity of care and regards the patient as his or her special patient for
Many thanks to the person with Severe ME for telling your story.