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"I saw 2 GP's in the summer holidays. They were cold to
the point of hostile when I had the temerity to suggest that I had ME/CFS. I finally lost patience with the NHS and I was forced
to see a private holistic doctor who has listened to me and helped me make
some improvements.
I feel so badly let down by the NHS which is wedded to
the idea that ME/CFS is a psychosocial illness when 4,000 research papers
show that there is a physiological basis to ME/CFS. "
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Shelley
"They didn’t know what to do with me so I went to a
Manchester hospital. That’s when my nightmare began. I felt really ill at
that time and a sister said it was all in my mind.
"
.....read more
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"So much more needs to be done in researching
this illness, something caused it. I cannot believe the medical
professionals are still doubting this condition when it’s a recognised
neurological illness - NOT a psychotic illness! "
.....read more |
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"I am very weak and try to keep
my cognitive dysfunction to a minimum by not doing anything assertive. This
enables me to be part of my family and enjoy the day, even if it is from the
confinements of the sofa. "
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"I hope that in the near future doctors and specialists
will learn more about M.E and maybe a diet or something to aid us! "
.....read more |
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"I have since been sent to
another neurologist after my doctor found I was Rhomberg's positive, who
made me walk, did a scratch test on my feet, checked the weakness in my
legs, and said quite rudely, "you have ME, I am not going to waste time
doing tests on you" and that was it. I walked away feeling like I had wasted
this man's time. "
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" I
hope it demonstrates how utterly distressing it is for sufferers to not only
cope with their ever deteriorating health, but to cope with supposedly
professional people who use every opportunity to psychologically batter them
into submission. "
.....read more |
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" I have 'bad' days and 'better' days, but at the moment the bad days seem to be more frequent.
The doctors and nurses do not wish to know, as in their eyes it is a made-up illness.
"
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" Sadly the controversy surrounding ME/CFS and Lyme Disease causes many people not
to be properly assessed to see if their ME/CFS could be an infection such as
Lyme disease."
.....read more |
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"I am a nurse of 17 years which hasn't been able to work for over 4 years now. Being in the medical profession I am angered and embarrassed by the way I'm treated with this illness. I haven't had relief of any symptoms for a very long time. "
....
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Christine
From our
November 2009 newsletter -
misdiagnosis
and missed diagnoses are the end products of a system which
has failed to tackle this illness.
This story from Christine Wrightson is testament to the
failings of a generation of policy-based evidence making
from the UK government and the UK Medical Research Council.
"I am left not knowing who to trust or believe and I feel as if the NHS has mentally and physically abused me. The worst thing about it was knowing what was wrong with me, knowing what medication I needed and having to put up the fight of my life when I was so ill to get it. ".
.....
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What filled me with
resentment and embarrassment was that my father
and in turn many of his close friends and
colleagues were in positions in which they could
have propelled ME/CFS forward into main stream
medicine and greater acceptance. The way he
treated of me was merely an act upon one person
-- his denial that ME/CFS was real and his
refusal to help get understanding of the illness
and increased ME/CFS research into main stream
medicine was an act of medical irresponsibility
inflicted upon all people who have ME/CFS.
That is what I could never forgive him for. "......read more
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When the physios assured her that I was doing my best but that if I did indeed
have M.E. (and that) this intense physio would not help but worsen the symptoms,
the neurologist immediately referred me to a psychologist, as she also believed
M.E. is a mental illness. She told me she would only allow me to go home if the
psychologist gave me the all clear."...... read more
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I have attempted to put forward ME as a possible cause for these low levels
but, basically, the docs don't want to know. For them, there has to be a 'real
illness' for my test results. However, because of my test results, they no
longer tell me my illness is in my head, they just won't accept ME as the cause.
So, for now, the docs just say they don't know what's wrong. One doc went so far
as to say "You have a syndrome we don't understand.".....................
....
read more
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Now, nearly eight
years later, going from a student at the top of my class with an unlimited
future to a dependent, rather helpless person with no real hope for healing is
something that only others in this situation can understand.....................
....
read more
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So now it looks like I
will have this illness forever. It has taken some of my personality away but I
fight each day to preserve the bit of me I still have....................
....
read more
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I would say that the M.E started off quite moderately. I suffered with
feeling as I had with the Glandular Fever, only with worsening symptoms! Now at 35 I'm 99% bedridden, I am paralysed down the right hand side and in
both legs. I am incontinent and have a supapubic catheter fitted through my
stomach into my bladder...................
....
read more
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It's a continuous FIGHT with the disease, with the doctors (lack of interest or
knowledge), with relatives (lack of understanding) and life itself. ..........
....
read more
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All that is
available for me in the way of 'treatment' is CBT and GET. Even though, I
relapsed very badly on an aggressive GET programme. In spite of WHO
classification of ME as physical condition - it's a neurological illness not a
psychiatric condition - and despite the excellent Canadian Guidelines published
last year, it is impossible to find a consultant within the NHS with a
biomedical approach to this illness. ..............
....
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I was interviewed by
this supervisor every Monday and every Friday from then on. I felt like I was a
criminal. She took me into a small office and every time asked how I was doing
and how long would it be before I worked full time again because I was straining
the section as they had to cover for my absence..................
....
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After the examination
he said that my MRI scan was clear, therefore there was nothing he could find
wrong with me. He said that I should go back to work! I mentioned the
possibility of it being M.E. but he said that he knew nothing about it. That was
the end of the consultation, and I was discharged from his care. .
....
.
read more
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A nurse friend told me
it was very like something called Royal Free disease she had witnessed when she
worked there. So I started to look into it and determined to rest now instead of
"getting fit" as the doctors had been advising.
....
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read more
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It would help if you had a supportive family who understood it but mine are
not that kind of family. It is not a nice illness to have.
..... read more
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I am still waiting
for a proper diagnosis as well as my doctor believes that I have ME and I have
had lots and lots of blood tests, etc, but he has referred me to a specialist
and I am still waiting for the appointment.
..... read more
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At work I have been asked to go to see the company
doctor as no-one believes I'm unwell yet they see me struggling to walk on
occasions!
..... read more
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An experience of Graded Exercise Treatment for a person
with ME.
..... read more |
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After hearing my story, viewing my countless blood
tests, x-rays, internal examinations and MRI results and a thorough examination,
the neurologist immediately suspected that I was suffering from ME. He asked me
to look up the internet and check if all my symptoms were recorded on an ME
patient's list of complaints. Suddenly everything started to make sense and the
relief was priceless. A visit to a sensitive and patient physician, confirmed
the neurologist's diagnosis.
..... read more |
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We arrived at the doctors and the female doctor refused
to see me, saying I was not her patient, and she wasn't prepared to see me. I
was just in a state of shock and my partner was furious. The Doctor in question
didn't come out to the waiting room to see me, instead wrote a prescription for
three months of anti-depressants
....
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read more |
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Who am I?
..... read more |
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My family called the doctor to the house on one
occasion after I had
become too weak to walk or talk and couldn't make the bathroom without
assistance.
The GP advised me to go out for a jog in the sunshine.
..... read more |
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Despite strenuous efforts on my part to keep well and fulfil my duties to the best of my capabilities, I suffered a complete collapse in September, 2003 and was almost bed-bound for many months.
I have been unable to work full-time since then and even very small, part-time jobs cause the flu-symptoms, severe headaches, blackouts, loss of balance, nausea, weak limbs, IBS, brain-fog and exhaustion to start up again.
I'm one of the lucky ones.
.....
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The months passed still unwell, unable to work and I was made redundant from my job, I took them to court for unfair dismissal and won my case. The stress set me back and combined with battling doctors for more tests and trying to convince them I was not depressed but ill was even more distressing.
You desperately want to get better, get back to work, to the life you had
before, to socialise, to be able to read and cook and have conversations
without your words getting all mixed up. To get through the day without
collapsing on the sofa exhausted.....
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I was subjected
to a regime of the threat of physical torture, bullying, intimidation,
scorn, derision, lies, deception, malice, and above all hatred. The stress
and emotional torment induced in my mind was extreme beyond description......
read more |
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Just one disaster on top of another! But it all started with the
stupid TMJ.....
read more |
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I
felt humiliated and ridiculed by someone who was clearly a psychiatrist of
some description.......
read more |
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I
remember asking my doctor one day when I would stop feeling so tired!!!
...... She said give it time,.......
read more |
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How do I deal with family that say things like "stop researching that...don't
you think your just wallowing in it just the more?" How do you stop looking for
answers? When is it time to give up? Why don't people that have known you all
their lives...know you and what your suffering is REAL?? Why do doctors still
say this doesn't exist and yet look at many of us ...completely destroyed by
this disease.......
read more |
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When I try to get
medical care, the strain of trying to convince someone I am ill and the
hurtful things they say to me practically make me crack up. Just the
physical demands of leaving the house, even in the wheelchair, are enough to
make me sicker for weeks. I can't describe how ill it makes me.
......
read more |
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My GP thought I
had ME but kept saying, work through it, do lots of exercise you'll get over
it. They sent me to a sports centre to do a fitness course but I went once
and never again. It was about this time I saw the psych and he said there
was nothing mentally wrong that feeling well again wouldn't fix.
......
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Blaze
At this time last
year i was able to still care for my own needs butt as the summer progressed
so did my illness......
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Gary
I
was assessed for one ME clinic but they said I was too disabled and that
there were other issues that needed to be worked on. They also said that
because I was confined to a wheelchair they thought that would be too
upsetting for the other members of their group......
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Alice
In 2004 when I was 24 I became acutely ill with the Epstein Barr virus and was
admitted to hospital with severe anaemia and jaundice. I had become so ill but
did not seek advice from my doctor because my fears of being disbelieved are
still with me to this day.
......
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Angela
I was a happy normal child. I was 14, had friends, a happy home and a
LIFE.
This, as I was about to find out, was all going to change......
read more |
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Wendy
I fell ill with the flu
the same time as Antony, my then boyfriend/fiancé. He got over it, I
didn't.....
It was a struggle to get
the illness recognised....
read more |
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Di
Diagnosed with "very
severe Myalgic Encephalomyelitis (ME) 80% disabled" after becoming
profoundly ill in 1984, with what followed a "sever bout of flu".
Unable to move my legs,
arms and hands..........
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Judith
Originally written for ME
Awareness 2003 Judith's story tells of her experiences.
Since suffering with this
illness I have reached an all time low in my life.
At 36, I was a
happy-go-lucky Mum who was mad enough to try anything, go anywhere...
....
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Lauren
I had just turned 12 when I
first started to feel ill. For months I assumed it was a succession of bug and
viruses, Glandular fever was brought up as a possibility. It was only on looking
back that I realised I wasn't "shaking this off".....
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Joan
Up
until 1999 I had been a fit, active person. I enjoyed long distance cycling,
hill walking, sailing, and skiing. I enjoyed a very active social life and a
challenging job managing an oil refinery. I got a buzz out of living a full
life and I did not prescribe to the notion that stress is bad for you; for
me, a challenge was a good thing....
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