BRAME
Meeting on Myalgic Encephalomyelitis Grand
Committee Room, House of Commons.
Speeches & Biographies
Homepage DLA Report Meeting Report & Comments
As we all entered the Grand Committee Room we were all handed a blue folder with the BRAME logo on it. Inside it, to our surprise, along with other BRAME literature, was book which contained the speeches for the day as well as biographies of the various speakers who were doing presentations on the day. Due to the constraints of time on the day which have been mentioned in the Meeting Report, all the speakers tried to give slightly compressed versions of their speeches. The full versions of the speeches, along with biographies of their presenters, is presented here in their entirety.
Tanya Harrison, BRAME Biography
Speech
Dr E G Dowsett, "What is ME?" Biography Speech
Simon Lawrence, 25% Group Biography Speech
Dr Richardson, "History of Aetiology, Clinical Signs &
Investigations in ME" Biography
Speech
Steve Jervis, DLA Benefit & ME Biography Speech
Meghan Shannon Biography Speech
Tanya Harrison
Tanya is 22 years old and has had ME for the past 12 years - since she was 10
years old. She had a gradual and continued deterioration in her health until she became so
severely ill after 5 years that she was then referred and subsequently admitted to the
local James Paget Hospital. After months of intensive treatment, varying diagnoses, and
consultations with other specialists, Tanya was eventually diagnosed as having severe and
chronic ME. For the subsequent 7 years Tanya has been bedridden over that period for
80-100% of the time, and has continue to have additional symptoms. At the beginning of
1998 it has been confirmed that at the age of 22 Tanya has also developed osteoporosis of
the hips, and Osteopaenia of the spine, yet another consequence of living with severe and
chronic ME.
From the time Tanya was born, she was a very active and alert child, and was always
advanced beyond her age. By the age of 3 she could write her name, count and read first
stage reading books. Going on then to private kindergarten till her normal school age of
5, by which time she could read beyond her years, do all forms of arithmetic, and could
even speak simple French. Tanya did ballet and tap dancing until age 12 when the problems
in her muscles and joints were causing problems, and with her continued interest in
amateur dramatics was in several concerts. Tanya also played recorder, piano and violin
and was in school and regional orchestras as well as singing in a choir. She was also a
server and campanologist at her village church. Tanya was also a brownie, a girl guide,
and had just begun helping to run a Rainbow Group when her illness became so severe. She
was also a member of her school council and would also visit and help/play with the young
people who were resident at the local Mencap home. Tanya was also very academic, although
the attitude and total lack of understanding and support she received from her high school
caused her a lot of pain, but her condition became so severe she was unable to attend
school for the last 2 years.
All of this was before February 1991 when her illness was so severe, her life has changed
completely, but her inner spirit and determination has not waned. Being an academic Tanya
wanted to try and continue with some studies towards her life-long goal of going to
university, and the local college were extremely supportive allowing her to go when she
felt able, and always having a carer with her. During the 5 years at college Tanya still
tried to give encouragement to others. Tanya herself now plans to reach her next goal
which is to be a TV/Film director, and despite the severity of her illness has managed to
have some time on 3 film sets, The Bruce, Macbeth and more recently King Lear, which is
her favourite play by Shakespeare.
On 24 April 1995 Tanya launched the Blue Ribbon for the Awareness of ME campaign (BRAME)
as she strongly felt that such a campaign could help bring about a greater awareness and
understanding of ME. In November 1995 she attended the World Conference in Brussels (with
a bed on the floor for 80% of the time). From here the BRAME campaign was launched into
other countries around the world and BRAME is now in 20 countries around the world. The
campaign was an instant success amongst ME sufferers, offering them renewed hope and
encouragement at such a high profile awareness campaign whilst also offering a visible
symbolic support for all those living with ME. The campaign has helped to make a
difference in gradually changing attitudes of many in society and gaining acknowledgment
of people are really physically ill with this illness, but there is still a long way to
go, especially at the higher levels of governments and the medical profession.
Tanya's newsletter of the BRAME campaign, ME TODAY, and the other BRAME literature, is
used now in other countries, and has united people around the world in the battle to gain
acknowledgment and recognition that ME is a debilitating illness of physical origin. The
success of BRAME has come from Tanya's determination to highlight the reality of this
illness for so many people around the world, whilst always offering the much needed
support and understanding to those living with the illness.
Tanya's philosophy of living with ME is Accept, Adapt then Live, and after 12 years of
illness she now lives her very restrictive life Adapting and Living to the best of her
ability, and to obtain what quality of life she can. and her answer to everything is not
'I can't' but 'How can I?'
BLUE RIBBON FOR THE AWARENESS OF ME
WELCOME
Back to top
I would first of all like to thank Tony Wright, MP for Great Yarmouth, for helping
BRAME to make this meeting possible. I welcome the MPs who have taken the time out of
their busy schedules to join us today. I also thank all the ME sufferers for making the
enormous effort to be here. I know you will, like myself, pay the consequences for
attending today but we sincerely hope that you will feel the effort is worthwhile.
Before starting my speech I would like all the ME sufferers here to try and make
themselves as comfortable as possible. For the MPs here who are not aware of what it is
like to live with ME - If anyone blanks half way through a sentence, with no idea of what
they had just said, or were about to say, or their speech becomes confused, or words
jumbled - that is just some of the impaired cognitive functions that people with ME have
to live with. If anyone has to leave the room, lie on the floor, or their muscles go into
spasm that is living with ME. You will be hearing in more detail, from our medical
speakers, about the multitude of symptoms and the consequences for those living with this
most complex, individualistic and debilitating illness - ME.
I would like to explain that all of the speakers you will hear today will use the term ME
for this illness. We find the name Chronic Fatigue Syndrome derogatory and trivialising of
an illness where fatigue is only one of a multitude of symptoms. The majority of ME
sufferers around the world would like to see the term 'CFS' changed. In a recent survey on
the internet, on which name this illness should be given, 66.4% of sufferers chose ME, of
which 46.6% voted for Myalgic Encephalopathy, and 19.8% for Myalgic Encephalomyelitis,
whilst the term CFS received only 1.2% of the votes.
In my presentation I will be concentrating on how BRAME began, what we are trying to
achieve through the BRAME campaign, its success and developments to date.
PERSONAL STATEMENT
Before I tell you about BRAME I would like to give you a brief outline about
myself. I am 22 years old and have had ME for more than 12 years. The first 5 years was a
gradual and continual decline in my health with no diagnosis, only a repeated "I
don't like the look of that." The sore throats and recurrent flu-like illness started
when I was 10 and the severe headaches and photophobia started at the age of 12. Joint and
muscle pain increased until February 91 when the severe pain in the spine started and the
pain in my head, joints and muscles worsened until I reached the point of a severe
relapse, it was at this point that I was referred to the local hospital. Once at the
hospital, all the consultants I saw there were understanding of how ill I was, even though
they unable to agree on a final diagnosis. After a few months, my present consultant was
asked to see me, he diagnosed ME.
My symptoms have increased over the years and I now cannot stand, walk or hold my head
unaided and earlier this year I learned that I have developed Osteoporosis of the hips and
Osteopaenia of the spine, another consequence of living with chronic and severe ME. I am
also hypersensitive to most treatments which have been tried in the past, including
oxygen. I won't go through all my symptoms as it would take up the whole meeting.
Despite all my problems I have always tried to remain positive and have been fortunate
enough to have never suffered depression, mainly because I am surrounded by the love and
support of my family, and an understanding consultant, Dr Mitchell, who is with us today,
who has offered belief, understanding and support to ME sufferers in our area - something
which many other areas are sadly lacking.
I had a terrible experience at school where I was disbelieved and branded a school phobic,
yet I loved school - I had given everything to my school and yet when I needed them they
weren't there for me. After having to fight for everything, including trying to take some
GCSEs, I went to my local College of Further Education who were wonderful. They let Mum
stay with me, swapped classes around so I could reach them in my wheelchair, and most
importantly they supported me and told me to only come in when I was well enough. In the 5
years I attended the college, for most of the time I wasn't able to make even the
intermittent 1- 4 hours a week, but gradually I achieved all my goals.
BLUE RIBBON FOR THE AWARENESS OF ME CAMPAIGN
In April 1995 I read an article in The Sunday Times about ribbons for causes in
which it said that in America there was a Blue Ribbon for CFIDS - the American name for
ME. From wearing my red AIDS ribbon I knew how effective ribbons were at creating
awareness and stimulating discussion, so I thought the ribbon was a wonderful idea and why
hadn't the UK groups been involved? We contacted 2 of the major UK ME charities but they
did not want to get involved. In the end, after much discussion between my Mum and I, we
decided that we ourselves would go ahead and launch the campaign.
On 24 April 1995, with a lot of help from my Mum, I launched the Blue Ribbon for the
Awareness of ME campaign (or BRAME for short). Since that day the phone hasn't stopped
ringing and the post hasn't stopped arriving.
The BRAME campaign was greeted with warmth and enthusiasm the length and breadth of Great
Britain. As a result of the success in the acceptance of the Blue Ribbon, and the rapid
growth of the campaign, BRAME formed as an independent group.
The primary object of the BRAME campaign is to create awareness and understanding that ME
is a very real, and for many, a very debilitating illness, and the consequences of living
with ME, for the sufferer, carer and whole family unit. BRAME also offers support,
understanding and friendship to everyone affected by ME who contacts us.
BRAME relies on donations, and all monies raised by the BRAME campaign are used to
continue the aims of BRAME, with any excess funds to the awareness campaign being donated
into much needed research in ME. Steve Stothard of EAE, a Great Yarmouth communications
company, very kindly donated a fax/phone and sponsors the phoneline, this phone has become
a vital link in communicating with people around the world.
The Blue Ribbon has now become a symbol of the BRAME campaign throughout the world, and
the aim is for people to wear a Blue Ribbon throughout the year, to create awareness and
understanding of ME, the same principle as the red AIDS ribbon.
Since its launch, the BRAME campaign has covered the whole of Britain, and in November
1995 Mum and I attended the World Conference on ME in Brussels. We took information about
BRAME in six languages, as a result of which the idea of BRAME was taken back to 12
countries around the world.
BRAME has been successfully launched nationally in Australia, Ireland, Germany, Italy, New
Zealand, Belgium and Switzerland. Other countries are involved with the BRAME campaign on
a smaller scale, either through individuals or groups, such as South Africa, Israel and
Iceland, but all are most welcome. BRAME is now in contact with 19 countries around the
world. Norfolk MEP, Clive Needle, who has been most supportive of BRAME over the past 2
years, has also introduced BRAME into the European Parliament.
Since the launch we have distributed approximately 100,000 Blue Ribbons and have also
included other awareness raising products such as an enamel badge, a button badge, pads,
pens and greetings cards. The Blue Ribbon and enamel badge have become the universal
symbol of BRAME and ME sufferers around the world.
I produce the BRAME newsletter ME TODAY which is proving to be a great success around the
world - the first issue was 10 pages, it has now grown to 60 pages and we are continuously
receiving articles from around the world, including research papers from some of the top
researchers.
We have also produced three extremely successful leaflets. In the past two years we have
distributed 21,000 BRAME Awareness Campaign leaflets, 21,000 Information and Symptoms of
ME leaflets and 5,000 of our Sufferer's and Carer's Guide to Living With ME. Mum and I
have just written this literature from our experiences of living with ME for the past
twelve years. We would like to thank Dr Mitchell and Dr Dowsett, our medical advisors, for
their advice in producing the leaflets.
All of the BRAME literature is renowned around the world, and we have been told by
sufferers, groups and researchers that it is considered to be among the best literature
produced about ME. BRAME was invited to provide the literature to be enclosed in all the
information packs handed out at the Sidney World ME Conference in February. Australia are
now printing a version of the BRAME literature, specially revised and adapted with BRAME
for Australia, to be distributed to groups, individuals and doctors.
With the BRAME campaign, we hope our message will not only reach the disbelievers, but
also those who are feeling isolated living with their ME, and let them know they are not
alone, offering them the support, encouragement and hope they need.
FORGET-ME-NOT
Like many ME sufferers, I find it very difficult to verbalise my feelings about
living with ME, but I am about to read excerpts from a personal statement from a young
lady called Alison Hunter, which epitomises so eloquently some of our feelings.
"Somewhere in the recesses of my mind there is a memory of being active, of having
the energy to be active … when sprinting across the street was a reflex action. There
was a time when my body parts just existed … now they ache as if to remind me of
their presence. It is an exhaustion of the body and mind so profound that it becomes a
concerted effort to think, walk, and sometimes even move, sit, eat or breathe.
"When you are chronically ill, you tend to lose your identity to the illness, it
defines who you are and what you are capable of… particularly in other people's
perceptions. For years I was going to be "all better next week". Now I know
better, I know the statistics and am aware that I have moved into the so called chronic
stage with little chance of spontaneous remission. A cure may be just around the corner
but I have to face the fact that I may be sick for a long time yet.
It's not AIDS, although it is similar, you can feel equally as ill only it doesn't kill
you. Not Cancer either. I'm not dying or anything drastic like that. It's ME. "Don't
Forget ME."
Alison lost her fight against this illness on 9 March 1996, through complications of
paralysis, seizures and overwhelming infections, she was only 19 years old. Alison was a
brave and courageous person, who despite being severely affected, tried to raise
awareness. This included her speaking at the Dublin ME Conference in 1994, and founding a
young persons group in Australia. If you would like to read Alison's full story, it is in
Issue 7 of ME TODAY, which you have in your information packs.
Alison is just one of many who have died, these deaths need to be acknowledged. BRAME has
been asked to help establish a current and complete list of those people around the world
suffering from ME who have died. Not only will this list acknowledge those who have died,
but it will provide vital information for researchers.
TODAY'S MEETING
This is the third year BRAME has contacted all MPs and British MEPs informing them
about ME and enclosing a Blue Ribbon and our leaflets. We felt that for MPs to simply read
about ME is not enough, that they need to actually hear about it for themselves. I fully
admit that you will never truly know about ME until you live it day in and day out. Today,
you have a chance at the next best thing; to learn about the illness from talking to those
sufferers and carers, here today, who do know.
We have with us today 5 eloquent speakers, 3 of whom are well respected medical
professionals, who will present 'facts' and 'evidence' of the physical illness ME. The
other two speakers are themselves sufferers who, like BRAME, run independent groups, and
are representing the sufferers.
If we manage to keep to the agenda, and there is sufficient time left at the end of the
afternoon, there will be a chance for MPs and sufferers to ask the panel questions, or for
the sufferers and carers to tell their story.
To end the day there will be a chance for both the MPs and sufferers to mingle and talk to
each other about the illness. This will give the MPs an opportunity to learn first hand
what they can do to help those living with ME.
WHAT COULD BE DONE
We need acknowledgement and recognition of ME as a physical illness which is complex and
debilitating in nature.
- The Government need to put money aside for a comprehensive demographic survey of the
number of people in the UK with ME.
- Appropriate, comprehensive and realistic guidelines need to be compiled for the physical
illness ME. These need to be written in association with the independent
groups and ME sufferers, as they are the ones who understand this
illness the most. Three sets of guidelines need to be compiled:
- Medical Guidelines - Diagnosis and management of ME - to
be distributed to all GPs, hospitals and Local
Health Authorities
- Educational Guidelines - How to help and support students
with ME to get the most out of their education.
- Benefits/Social Services Guidelines - The nature of ME -
It needs to be acknowledged that ME is a serious
and disabling illness but also the
unpredictable nature of the illness.
As well as the guidelines the following areas need to be addressed:
Medical:
- Multi-disciplinary clinics specialising in ME to be set up across the country.
- Education of the realities and physical nature of ME for medical students as well as for
existing doctors and other health support staff eg. nurses and physiotherapists.
Education:
- Individual educational plans should be set up with the necessary understanding and
support, within the school environment if appropriate.
- Home tuition be provided for those unable to attend school.
- Research made into other options eg early entry into FE colleges where appropriate,
particularly evening classes as some ME sufferers have sleep reversal, and so the evenings
might be the most productive time for them.
Benefits/Social Services:
- Education is needed about the symptoms and unpredictable nature of ME.
- Appropriate care provided for those unable to look after themselves.
- Training and monitoring of visiting benefits doctors and their attitudes towards ME and
the sufferers they are visiting.
CONCLUSION
Basically what is needed is a heightened awareness and understanding of ME. The most
important things that you can give those suffering from ME are belief, understanding and
support, which will facilitate an improved quality of life for those suffering from ME,
their carers and the whole family unit.
Through our campaign we also hope that through greater understanding and awareness that
those suffering from ME will receive an early diagnosis and the introduction of a good and
appropriate care management plan. Whilst there is still no cure or effective treatment for
ME/CFS we feel, if we can help achieve this, then it will help to improve the quality of
life for all those suffering from ME and their carers, and hopefully less people will
become severely affected. If I had had an early diagnosis, rather than being left for five
years, I believe that I would not be this severely disabled.
A lady who is at present between the diagnosis of MS and ME told us:
"The diagnosis doesn't change the symptoms, just how others perceive you; I have a
diagnosis of MS therefore I'm a 'cripple', if that diagnosis changes to ME, my body
remains the same, but I'm considered a 'malingerer'."
Whatever illness people suffer from they should be treated equally according to their
symptoms and debilitation. Until the attitudes towards ME change we have little hope for
that, but that does not mean that we will stop fighting for our basic human rights.
The very fact that the BRAME campaign has become an almost instant success, both in the UK
and so many countries around the world, has showed that there was an obvious need - which
BRAME has fulfilled. Yet all it has taken is the belief and determination of a chronic
sufferer and 24 hour carer, a daughter and mother.
It is said that every journey begins with a small step, but I hope today is a giant leap
towards the acknowledgement and recognition which is deserving of such a chronic and
debilitating illness, which is a life changing experience for all those living with ME.
Please remember that today is not just an event, it is the beginning of a new way forward.
Dr E G Dowsett
Dr Betty Dowsett studied medicine at Edinburgh University, worked as a GP in
London and Kent then retrained in Microbiology and Infectious diseases at the London
School of Hygiene and Tropical Medicine. She has always run an 'open' clinic for GPs who
have had difficulties in getting a diagnosis for patients with infections.
In 1965 she saw her first family with ME and since then has seen them in increasing
numbers. She has a database of some 3,000 patients and published her first research papers
on ME in 1988 and 1990. She is particularly interested in the problems of young people
with ME (up to 30 years of age) because of the devastating effects it can have on their
lives and is the co-author (with Jane Colby) of the recently published five year study of
ME in the English school publication.
WHAT IS ME/CFS? (Myalgic encephalomyelitis)
ABSTRACT: ME/CFS is now one of the commonest chronic neurological
diseases in the UK, with an estimated prevalence of some 300,000 sufferers in the UK,
although no official statistics are yet available. The illness affects mainly middle aged
adults and adolescents between 13 and 15 years, when the female/male ratio approaches 3:1,
owing to hormone linked immunological changes. Chronic disablement of this most
economically and educationally active section of the population is likely to pose grave
economic problems in respect of financial support for those who miss education and
training and remain disabled for work in the future. Due to a fruitless and unnecessary
dispute between doctors and scientists who, with the use of modem technological methods,
demonstrate unequivocal brain damage in subjects with ME/CFS and those who adhere to
psychiatric belief in hysteria, ignorance of the true nature of this condition is
widespread, while appropriate management and support services are shamefully lacking. It
is suggested that a government funded demographic survey of the number, geographical
location and occupation of those affected is essential for forward planning, while
patients should now have equal access to NHS diagnostic and therapeutic facilities and to
financial and social support, as for any other chronic disabling illness. Investigation of
the infections circulating in schools which can initiate or trigger relapse of ME/CFS
would provide valuable information leading to diagnosis and prevention, while educational
research should be directed to the management of children with ME/CFS in the same way as
provision is made for dyslexia, autism, dyspraxia and other disorders posing educational
problems.
1. INTRODUCTION
ME/CFS is a syndrome (a group of linked symptoms) initiated by a virus infection, commonly
described as a short term respiratory/gastro intestinal upset which may be accompanied by
sore throat, enlarged glands and significant headache, from which the patient,
unaccountably, fails to recover. Although the apparent triviality of this illness may
evade recall, more dramatic onsets following viral meningitis, myocarditis, pancreatitis
or other endocrine disturbance are recognised.
2. CLASSIFICATION
Although ME/CFS remains a multi-system syndrome with variable involvement of cardiac and
skeletal muscle, liver, lymphoid and endocrine organs, it is primarily a neurological
disease and 9
classified as such by the World Health Organisation international classification of
diseases (ICD 10).
3 ) CHARACTERISTIC CLINICAL FEATURES INCLUDE:
a. A profound neurological disturbance leading to:
i) An unpredictable state of Central Nervous System exhaustion following physical or
mental exertion, which may be delayed and require 1-3 days for recovery (1). This
disability is commonly overlooked in assessments of physical endurance by State Benefit
and other agencies who fail to take into account the prolonged after effects.
ii) A unique neuroendocrine profile due primarily to downgrading of the
normal hypothalamic/pituitary/adrenal response to stress (2). This is the opposite of that
prevailing in depression.
iii) Disturbance of both autonomic and sensory nervous systems (3), with
profound effect upon cardiovascular and gastrointestinal function and reaction to pain as
well as upon the natural homeostatic control of sleep, temperature, fluid balance and
other vital physiological functions.
b. Musculo-skeletal problems are experienced by up to 70% of sufferers.
c. A chronic relapsing course:
1) Although the illness may stabilise with the benefit of early diagnosis, explanation and
appropriate management , absence of prompt support, encouraging the patient to carry on
regardless, greatly increases the likelihood of permanent disability, complicated by
cardiovascular, endocrine and other end-organ failures.
ii) The tendency to relapse remains life-long and further incidents may be triggered by
secondary infection, immunosuppression (whether by inappropriate immunisation,
anti-inflammatory steroid, psychoactive, neurotoxic, or cytotoxic treatment, exposure to
tobacco
or to toxic environmental agents), hormonal imbalance, stress in the form of mental or
physical
overexertion, surgical trauma, malnutrition or climatic extremes for example.
iii) Age at onset of the illness, gender, pre-existing/co-existing
disease (e.g. diabetes or depression) genetic predisposition as well as the dose and
potential virulence of the infecting agent, will all have a profound influence upon
outcome.
3 HOW COMMON IS ME/CFS AND WHO IS AFFECTED BY THE ILLNESS?
i) Prevalence
In the absence of a major Government funded demographic survey in the UK, no statistics of
prevalence are available other than those supplied by non-governmental agencies and
individual researchers studying selected communities. Based on our study of over 360,000
members of the UK school population in six English Education Authority areas between
1991-1995 (4), we estimated the prevalence of ME/CFS to be 500/100,000 in adults and
70/100,000 in pupils. Bearing in mind the fierce competition for funding and recruitment
of capable students between schools at that time, the natural reluctance to admit a poor
health record would suggest that these figures might be doubled, giving an estimate of
between 300,000 and 500,000 adults suffering from ME/CFS in the general population and
between 6,000 and 12,000 school children.
ii) Age and Gender
Females are more commonly affected than males and, from the age of puberty, the F/M gender
ratio approaches 3:1. This is related to hormone linked immunological differences which
arise in females during the child bearing period (1). The peak age of onset of ME/CFS is
between 30 and 40 years with a smaller peak between the ages of 13-15 in adolescents.
iii) Occupation
ME/CFS is an occupational hazard of professionals and other employees exposed to infection
in Healthcare, Medical Laboratory work, Teaching (1) and Childminding as well as
individuals in Sports and Tourist industries or engaged in Water and Sewage treatment.
However, our studies indicate that there is considerable geographical variation in
incidence, linked to population movements (e.g. from major conurbations to suburbs and New
Towns in green field sites in the UK).
4. WHAT IS THE COST OF UK SUPPORT SYSTEMS FOR ME/CFS?
i) Statistics
Although statistics have been made available from the USA and several other economically
developed countries, no figures are available in the UK and these can only be estimated by
analogy with similar chronic disabling neurological diseases such as Multiple sclerosis.
With the exception of school children, who are rarely affected, Multiple sclerosis
encompasses a broadly similar population in relation to gender and age. Figures available
from charities and non governmental agencies suggest medical costs per annum of 25
million, loss of earnings at 100 million and lost working years at 19,000 (5). A recent
estimate of the incidence of Multiple sclerosis in East Anglia suggests some 200/100,000
so that these figures may need to be doubled in relation to ME/CFS. In the USA, ME/CFS
comes second in the table of most expensive chronic diseases places above AIDS) while
insurance claims for Nurses, Doctors and Medical laboratory workers have doubled in the
past 5 years, though few of these are ever met!
iii) Quality of Life
Though this remains the key issue in estimating the value of financial and social support
for sickness, it is admittedly poor for sufferers from any chronic neurological disease.
However, it is increasingly burdensome for patients with ME/CFS by reason of the
disbelief, ignorance about the illness, discourtesy, abrupt refusal of social benefits,
pensions and insurance accorded to them (by Benefit agency doctors and some other Health
Care professionals) which makes their existence unnecessarily wretched and lacking in
hope.
5. ME/CFS and the NHS PATIENTS' CHARTER (6)
Any health professional with long experience of seeing ME/CFS patients fit enough to
attend NHS facilities, will recognise the following incidents recounted by those who wait
patiently to be seen and expect to be:
i) TREATED WITH SENSITIVITY AND COURTESY, only to be told that their
doctor does not know about NT/CFS or 'believe' in it and cannot find the time to visit
those who are bedridden.
ii) KEPT FULLY INFORMED OF THEIR PROPOSED TREATMENT AND CARE, but
emerge, often within minutes, without a word of explanation or clear advice about their
condition and with no hope for the future.
iii) MAINTAINED IN CLOSE CONTACT WITH FAMILY AND FRIENDS but, if parent
or child with ME/CFS, are threatened with separation by social workers or by an embargo
against visiting in a psychiatric unit.
iv) TREATED IN A CALM AND PLEASANT MANNER, but are struck off an NHS GP
list (together with their family) and given no explanation or admitted to a brilliantly
lit and noisy hospital ward despite severe defects of vision and hearing (photophobia and
hyperaccuisis), left without wheelchair access to a lavatory, assistance with feeding or
support in a hydrotherapy pool.
v) ASSURED OF CONFIDENTIALITY OF THEIR MEDICAL RECORDS, yet discover
they have been given an inappropriate psychiatric diagnosis, find their parents accused of
MUNCHAUSEN's syndrome and are obliged to take legal action for the removal of these
incorrect and perjorative remarks.
vi) TREATED WITH RESPECT FOR THEIR CULTURAL, RELIGIOUS AND PHILOSOPHICAL
BELIEFS, yet (especially in the case of adolescents and other minorities) are publically
humiliated and reduced to tears because of a genuine inability to do what is asked of
them.
vii) PERMITTED TO ACCEPT OR REFUSE TREATMENT WITHOUT PREJUDICE TO THEIR FUTURE CARE, but
find their insurance, pension or social benefit rights withdrawn if they do not agree to
accept treatment with antidepressant drugs (in the absence of depression) cognitive
behaviour therapy (to change their belief in the organic basis of their illness) and
graded exercise (despite the fact that the majority of ME/CFS sufferers are already
performing dangerously near their energy limits).
viii) BE INVOLVED IN A HOSPITAL DISCHARGE PLAN, but are all too
frequently discharged, still unfit, and at short notice, without a care plan which (in the
case of a psychiatric unit) is especially dangerous because of the high risk of suicide in
patients with ME/CFS.
ix) BE GIVEN THE RIGHT TO CONSULT THEIR MEDICAL RECORDS FROM 1991
ONWARDS, but usually incur anger if they ask to do so.
6. WHY HAS THIS HAPPENED?
Since 1910, when a milder or non paralytic form of poliomyelitis was first recognised, the
clinical distinction between some forms of polio and NE/CFS has remained blurred. It was
not until 1948 that it first became possible to make a virological distinction. It was
then found that the agents of both (7, 8) were in the same virus group (hereafter
classified as polio and non-polio enteroviruses and exhibited considerable overlap in
relation to symptoms (7). Mass immunisation against the three polio viruses in the late
1950's, merely served to bring into greater prominence diseases strongly associated with
other enteroviral infections (including myocarditis, juvenile onset diabetes and ME/CFS,
all of which are increasing, in incidence) and permit them to be studied with greater
accuracy by the new techniques of molecular biology such as the polymerase chain reaction
(PCR)(8).
Fear of serious illness has always attracted a magical, religious or psychiatric
explanation, and this has been applied, in the form of 'hysteria' to polio, Multiple
sclerosis and ME/CFS respectively. It is sad to reflect that, at the dawn of the 21st
century, the psychiatric profession cannot yet make a clear distinction between
psychiatric illness (9), a putative hysterical state and the post encephalitic brain
damage now demonstrated by new techniques in radio biology (10) which clearly delineate
the specific anatomical sites affected in the brain of subjects with ME/CFS. There is, in
addition, a plethora of data from experts in virology, molecular biology,
neuroendocrinology, neurohistology and neuropsychology supporting the or-organic basis of
the characteristic signs and symptoms observed in ME/CFS. None of this might have come to
public attention had recent guidelines on the treatment and management of ME/CFS
(published by the Royal College of Physicians (11) not ignored this evidence and been
based entirely upon psychiatric theory. For example, there is support for highly
inappropriate psychiatric treatment (including antidepressant drugs (12)) for seriously
brain damaged children who are expected to return to school without the benefit of rest or
home tuition until recovery.
7. WHAT IS THE SOLUTION?
In view of the increasing problems related to the management of ME/CFS in the UK today,
and the fact that it principally affects the most economically and educationally active
members of the population, we owe it to our patients, no less, to put an end to the
fruitless argument between scientists and doctors whose ample evidence of the organic
basis of ME/CFS is suppressed (13) while those who cling to the centuries old magical
world of psychiatric belief receive maximum publicity.
In fact, the current management of this serious disability and lack of provision for
support, brings shame to us all, to say nothing of denial of patients' rights under the
NHS charter (which is not experienced by those with a similar disability but a different
diagnosis). Money raised by charities (largely by the patients themselves) will not
purchase the measures needed to redress this situation. At the same time, the enormous
cost to the government of the future care of disabled young people who have missed
education and training, would be amply repaid now by the following measures:
i) GOVERNMENT FUNDING FOR A COMPREHENSIVE DEMOGRAPHIC SURVEY,
without which it will never be possible to cost the problem or direct aid to specific
areas and make
strategic plans.
ii) THE ISSUE OF GUIDELINES ON CARE AND MANAGEMENT OF ME/CFS to all
professionals working with these patients which must include evidence of the organic basis
of the disease. These guidelines need to be compiled by those with 'hands-on' clinical
experience.
iii) THE RIGHT OF PATIENTS TO EQUAL ACCESS IN RESPECT OF NHS
FACILITIES AS WELL AS TO SUPPORT SERVICES AND FINANCIAL BENEFITS,
INCLUDING THOSE SUPPLIED BY PENSIONS AGENCIES AND INSURANCE
SCHEMES must be assured, as for any similar disabling illness.
iv) INFECTIONS CIRCULATING IN SCHOOLS, WHICH CAN TRIGGER THE ONSET OR
RELAPSE OF ME/CFS IN STAFF OR PUPILS, would, if investigated, readily provide important
information about diagnosis, prevention and management.
v) IN VIEW OF THE SEVERE EDUCATIONAL DEFICIT INHERENT IN THIS DISABILITY
BETWEEN THE JUNIOR AND SENIOR SCHOOL AGE GROUPS, research into educational management
should be encouraged and funded (as for dyslexia, dyspraxia, autism and similar
disorders).
References
1. HYDE BM, GOLDSTEIN J, LEVINE P. Eds. The Clinical and Scientific Basis of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome. Nightingale Research Foundation, Ottawa,
Ontario, Canada., 1992; 1-724 (available from the Royal Society of Medicine Library,
London).
2. DEMITRACK MA. Chronic Fatigue Syndrome: a disease of the hypothalamic pituitary -
adrenal axis? Annals of Internal Medicine, 1994; 26: 1-5
3, FREEMAN R, KOMAROFF AL. Does the Chronic Fatigue Syndrome involve the
autonomic nervous system'.'
AM. J. Med, 1997; 102: 357 ')64
4. DOWSETT EG, COLBY J. Long term sickness absence in UK schools: an
epidemiological study with medical and educational implications. Journal of Chronic
Fatigue Syndrome, 1997; ' )(2): 29-42
5. MULTIPLE SCLEROSIS data from Office of Health Economics (1 98 7) and
ACTION RESEARCH FOR M-MULTIPLE SCLEROSIS (1 994)
6. With grateful acknowledgement to an illuminated manuscript displayed
in the patient waiting, area of a large District General Hospital in Essex (1998).
7. LYLE WH An outbreak of disease believed to have been caused by ECHO 9
virus. Arm Int Med. 1959; 51. 248-269
8. MUIR P, KAMMERER U, KORN K. et al. Molecular typing, of
Enteroviruses. Current status and future requirements. Clinical Microbiology, Reviews,
1998; 11 (I): 202-227.
9. JASON LA, RICHMAN JA, FRIEDBERG F. et al. Politics, Science and the
emergence of a new disease. American Psychologist, 1997; 52(9): 973-983
10. SCHWARTZ RB et al. Detection of Intercranial Abnormalities in
patients with Chronic Fatigue Syndrome - comparison of MR imaging with SPECT. American
Journal of Roentgenology, 1994; 162: 935-951 - see also: 943-951
11. Report of a Joint Working Group of the Royal Colleges of Physicians, Psychiatrist and
General Practitioners. Chronic Fatigue Syndrome. CR54 1996.
12. ADAMS S. Prescribing of psychotropic drugs to children and
adolescents. Brit Med J, 1992; 68: 63-65
13. LANE RMJ, WOODROW D, ARCHARD LJ. Lactate responses to exercise in
Chronic Fatigue syndrome. J. Neurol Neurosurg and Psych, 1994; 57. 662-663
Simon Lawrence
I am a 39 year old man, who originally came from the South of England, but who
has been living in Glasgow, Scotland now, for 16 years.
Before becoming ill and disabled through ME, I worked in residential care with adults with
learning difficulties, before leaving, I was a deputy project manager, leading a team of
staff in teaching others how to lead fulfilling and independent lives. That was 5 years
ago, before having a Tetanus injection and catching the flu.
Now after all this time, and after many investigations, scans and other medical tests, I
am left to make the most of my situation, of having to cope with long term disability
caused by the ME. I live alone, and survive with the help of Social Services coming in
every day and friends also looking after me. All aspects of my life are now mainly
supported with the help of others, this is difficult when you are a strong and independent
minded individual who enjoyed work, walking, gardening, family and socialising, but this
is what I have to accept in order to get on with the rest of my life.
My life now, and running a group for the severely affected ME sufferer.
I became involved in this group 3 years ago when it was first started up, I volunteered to
do the Desk Top Publishing as a means of trying to keep my mind active and give me a sense
of purpose. I also felt that I was not alone in being so severely affected (ie. at this
point I was having to use a powered wheelchair to get about indoors), and there must be
many others who felt isolated too.
This group is called the '25% Group' .Why is it called this?
It is thought that of the total of 150,000+ people estimated to have M.E. in the UK, maybe
as many as 500,000, that approximately 25% of that figure, are severely affected by the
disease, by this we mean, those who are virtually house bound by the effects of the
illness, and who are often disabled to the extent that they require 24 hour care.
Why is such a group needed?
To break the terrible isolation the illness brings to severely affected M.E. sufferers.
This is a group for people who cannot get to support meetings like other sufferers, also
the effort would make them very ill indeed. And more often than not, because the very
effort of visitors or any sort of conversation, noise etc., it gradually erodes any form
of socialising with friends and family.
So a group like ours is vital to break the cycle of isolation, in order to provide a means
of reaching out to the outside world.
What does the 25% Group provide?
We have various ways to help break the isolation and give support to each other:-
· Twice yearly newsletter, called the 'QUARTERLY'.
· Contact list, where members make contact with each other by letter, telephone, talking
tape.
· Talking book service.
· Giving general information about benefits, and other helpful tips to make life a little
more bearable.
· Plus other ingenious methods of communication between each other.
Many of our members are so ill that they are unable to write or even talk, so we have
other methods of communication, like a talking tape service; a letter writing service,
which concentrates on those who are unable to communicate at all because of the severity
of their illness. This helps to make them feel they are not forgotten.
Our membership is spread far and wide throughout the UK., even some in South Africa,
Australia and Sweden. It is very obvious that such a group is needed because of the extent
of the suffering in so many peoples lives and the problems caused to families because of
this. We as a group, try to give meaningful support to one another, and although we never
actually see each other face-to-face, we do try to help each other through the dark times
of despair, especially when it comes with the added frustration of dealing with the
medical professions inability to properly manage and even recognise this very disabling
disease, then have to 'run' the gauntlet of the various DSS and DLA forms and reviews.
In conclusion:
At the end of the day, we seek to support, plus hopefully educate and inform others of our
plight, so that Government, Media and the public in general will begin to truly recognise
this illness for what it is - a disabling physical condition that can strike anyone, at
anytime (as does MS and other such diseases), and that we need serious research and
medical care to help us survive and help us make the best of our lives.
Talk
Back to top
M.E. TALK ON BEHALF OF THE 25% GROUP
PART ONE
Thank you for this chance to be able to put across what it is like to suffer from ME, a
disease that for so long has been ridiculed and the people suffering from it, called
'malingers', 'time wasters', and other very insulting and demeaning comments.
I want to spend a few moments going through a list of symptoms that most ME sufferers have
to put up with on a daily basis, especially the severe cases:
- Unnatural Fatigue. Not just being tired after doing a hard days work, but from doing
simple tasks and then feeling extreme fatigue and exhaustion, even pain
- Tingling, or pins and needles, anywhere in the body
- Difficulty in walking or use a wheelchair
- Dragging either foot
- Loss of coordination
- Loss of sensation or strange sensations anywhere in the body
- Numbness in the hands and feet, limbs and different parts of the body;
- Feeling of 'altered' consciousness, ie. feel like cotton wool or the feeling of being
heavy like 'lead'
- Slurred speech
- Tremors
- Depression
- Loss of balance
- Inability to hold a conversation for more than a few moments
- High levels of pain, even to the degree that morphine is needed but this only gives
partial relief
- Loss of temperature control - ie feeling extreme cold or heat in the extremities
- Vertigo and dizziness
- Bad concentration and short term memory loss
I could go on but time does not allow it. To most people who are healthy and active might
rightly think. "How could someone have that many symptoms of ill health?"
They would be right as well, no-one in their right mind would be able to cope with that
kind of illness continually! We would give much sympathy to anyone who did have to suffer
such ill health.
I have just described the symptoms that a person with severe MS has to suffer from
especially those in the later stages of the disease.
But these are also some of the symptoms that a person with moderate to severe ME has to
cope with much of the time, some are even worse.
Then why is it that so many of these people are treated as though their illness is 'all in
the mind', ie psychological in nature ?
Well this is something that ME sufferers and researchers are trying to change, we are here
today to show and tell our MPs that this is an illness that has to be taken seriously like
other parts of the world like the US and Australia. People with MS were not always treated
with belief, but were also labelled as suffering from 'Hysterical Paralysis' and being
'malingerers' for many years, even decades.
PART TWO
I am here to represent a group called the 25% Group.
A group that was set up because: ME is potentially a severe disabling disease that affects
the central nervous system and the immune system.
a) It is thought that of the total of 170,000+ people estimated to have ME in the UK, that
approximately 25% of that figure, are severely affected by the disease, by this we mean
those who are virtually house bound by the effects of the illness, and who are often
disabled to the extent that they require 24 hour care. Those who are severely affected
often also have continuous fevers and infections, and other medical problems that seem to
be triggered by the ME, further disabling the individual so they require intensive medical
and personal care requirements.
b) We formed the group to break the terrible isolation the illness brings to severely
affected ME sufferers. This is a group for people who cannot get to support meetings like
other sufferers. The effort would make them very ill indeed. More often than not, the very
effort of visitors or any sort of conversation, noise etc, gradually erodes any form of
socialising with friends and family. It is not that we can't cope from a psychological
point of view, but rather that the concentration and effort involved causes extreme
exhaustion and worsening of symptoms.
So a group like ours is vital to break the cycle of isolation, in order to provide a means
of reaching out to the outside world, so helping sufferers feel they are not alone with
this illness.
PART THREE: SOME INDIVIDUAL TESTIMONIES
Alison Kennedy
Before September '88, I was the busy mother of three young children and also working part
time for a home-care agency. Now ten years later I live a very restricted lifestyle,
housebound and mostly bedbound due to severe pain, weakness, dizziness swollen glands and
unable to walk more than a few steps without severe pain. I have not brought this life
upon myself, it is something that 'invaded' me. Please help me, help us, by starting
urgent Government medical research into this devastating disease.
Sue Firth
Tall slim, 38yr old, with good sense of humour. Own house, car and p/time job. Into
theatre, cooking, fell walking, keep fit. Member of church council, play group committee,
school PTA secretary. Married with 2 children, you get the general idea!
That was back in 1991, just before I started getting ill with vague symptoms; bad
headaches, aches and pains, dizziness, nausea and catching every virus going.
By 1993, I had to give up work, shelve my plans of returning to college for further
training. Instead I had to start visiting hospitals and doctors to find out what was
happening to me; why I was too exhausted and dizzy to drive, why my left leg dragged and
refused to work properly, why I needed to use a wheelchair for walking any more than 300
yards.
"You've got post viral syndrome" the hospital registrar said. "You may have
heard it called ME. It will take 6 months to 2 years, but you will get better. I'm giving
you anti-depressants and signing you off as there is nothing else I can do for you."
For the next 8 months I dragged myself around, trying to look after the children etc, but
in March 1994 the illness was so severe, I had to go to bed 23 hours a day.
Christmas 94, and another virus. That one made me completely bedbound, 7 days a week, 24
hours a day.
April 95, another virus, now I was unable to feed myself, turn in bed, sit-up, I also
became double incontinent.
It is now May 98, I have improved a little ie now I can feed myself, if it is cut up for
me, use the phone using a special telephone headset. I can only have a shower and wash my
hair once a fortnight with assistance from a nurse, as being up causes a great deal of
exhaustion and pain to the point of collapse.
I still try to live as full a life as possible and enjoy my family around me, in between
relapses when I am in so much pain that even morphine does not have any effect, having to
lie in the dark, being sick into a bucket.
Will I get better?
I want to! There are many more like me. Mostly invisible and unheard.
Who cares - You I hope?
What do we need - well recognition would help. Research by Government into the cause and
treatment of this physical disease.
Better medical treatment of our condition by all health professionals.
Benefits, without the constant threat of having them withdrawn with no explanation!
Please help. ME is becoming a serious issue for our country and this could happen to you
or a loved one of yours at anytime.
Dr John Breward
History
Prior to summer 1985, I enjoyed good health. I was leading a full and active life, and had
a promising career ahead of me in medical research. I had obtained my Ph.D. in
Neurophysiology here in Edinburgh, and was employed as a post-doctoral research fellow for
Syntex Pharmaceuticals.
Outside my work, I had many hobbies: cycling, swimming, walking, skiing, music (I played
guitar and keyboards), concerts, theatre, film, dancing, photography, languages,
political/environmental activity, and much general socialising.
I contracted pneumonia in the summer 1985. After several severe bouts of influenza in
1986, I fell ill in spring 1987 with a severe flu-like illness. This persisted, and I was
diagnosed as having ME, which has persisted ever since. I had to abandon my medical
research career in summer 1987 and I have not been able to work since.
Effects of the illness on my life
My life is now extremely restricted. I cannot work, and so have lost my career, the social
life of my profession, and of course, my income.
I exist solely on Incapacity Benefit and Disability Living Allowance and am dependent on
Social Services and friends to do my shopping, housework, and cooking. I get meals on
wheels from the council.
The effort involved in negotiating the stairs to my flat are enormous, and usually
exhausts me completely for a week or so afterwards. I get outside roughly once per
fortnight, but this is very unpredictable, making it next to impossible to plan ahead to
make hospital appointments, for example. If I need to travel more than 10 yards outside
home, I need transport of some kind. I do not own a car, so I have to have someone to
drive me or I use a taxi.
I have had to abandon all my hobbies, and now can only listen to the radio, watch TV, and
read occasionally. I have difficulty concentrating on reading for any length of time and
the muscle fatigue and pain make it difficult to hold books up and to type. My social
life, formerly very busy, is minimal, dependent on visits from friends.
To sum up, what was once a life that was fulfilling and full of academic achievement has
been transformed into a dreary, painful, unproductive existence.
All our members were participating as people who had everything to live for; many in
employment, people bringing up families, students studying to enter employment of their
chosen career, children who were doing well at school.
Part 4
WHERE DO WE GO FROM HERE?
a) Greater recognition of the disease as a biological/physical illness, not something that
is just, 'all in the mind' ie psychological.
As with MS and other chronic neurological diseases a psychological factor does play a
part, but then when you see the effect that such an illness has on an individual and the
gradual erosion of everything that each of us takes for granted, is it not surprising that
some even feel that they are going mad!
b) Central Government Funding into the causes and pathology of the disease, especially
into the physical causes with its effects and biological aspects, plus a reliable
diagnostic test.
Also collecting and collating the research that has already taken place by many eminent
scientists and doctors throughout the world and work together in finding a speedy
conclusion to this illness.
c) Better education and up to date information for GPs in diagnosing the condition from an
earlier stage, thus hoping to prevent the illness doing irreparable damage and so causing
greater strain on our National Health Service and benefits system.
HOW MIGHT THIS BE ACCOMPLISHED?
1. An Alliance of Patient Groups and Health Professionals - Patient groups working with
health professionals, who have 'hands on' experience of working with ME/CFS, like the
groups speaking today. This would include allowing greater input to the Royal Colleges of
Physicians reports and recommendations for GPs, by Specialists and researchers of the
physical aspects and causes of ME, as well as support on the psychological level.
2. Producing a Care Management Package for patients to go out to every doctors surgery and
other health agencies including Social Services, in order to provide guide lines of how
to:
a. Diagnose if a patient has ME/PVS/CFS.
b. Give guidelines of how to treat the condition before it goes into ME, including
medication that may be appropriate.
c. Provide other services to aid the patient to a better recovery from the illness during
the early onset, including both Health and Social Services.
3. More empathic help and advice for those who have no choice but to go onto benefits,
without the stress of feeling that their benefits can then be taken away from them at any
moment, as is the situation at present.
IN CONCLUSION
Thank you very much again for giving me the chance to talk to you this afternoon, and to
BRAME for all their hard work, it is most appreciated by all ME sufferers, especially the
severely affected.
To all the MPs and Government officials. I do hope that you will take on board our plight
and seek to change current thinking in certain circles, about the attitude and approach to
ME sufferers.
I do hope the ME sufferers that made it today, (you can wake up now) do not have too
severe a relapse.
Thank you.
Dr Richardson
Dr John Richardson was a founding member of the Department of Family and
Community Medicine at the University of Newcastle-upon-Tyne. He has had extensive
experience in Physical Medicine, Cardiology, Neurology, and Histopathology as well as
Obstetrics. He has delivered more than 5,600 babies in his own practice, many of which he
has treated throughout their lives.
Dr Richardson has been examining and treating ME patients on a continual basis for the
past 43 years, longer than any physician alive today. He has carried out four decades of
research into the effects of viruses and subsequent organ pathology.
Dr Richardson has put a lot of hard work into his Newcastle Research Group, and also with
The Nightingale Research Foundation, and has helped organise their symposiums. The
Nightingale Research Foundation is named after Florence Nightingale and is a charitable
foundation based in Ottawa, Canada and incorporated in 1988 to conduct and assist research
into the cause and cure of ME and to serve as an educational institution, for the Canadian
public, physicians, nurses, teachers and their professional societies.
Talk - HISTORY OF AETIOLOGY, CLINICAL SIGNS AND
INVESTIGATIONS IN M.E
In the early 1950s we saw outbreaks of Bornholm disease. Madsen in his foreword
to Sylvests monograph, "Epidemic myalgia - Bornholm Disease" remarked, that
"present day research tends to gravitate to hospitals and laboratories but the work
of Sylvest shows that there exists a field for clinical investigation - of the variegated
pictures of this illness",
The words, "variegated pictures of this illness" soon became apparent to me.
During the 1950s, a number of cases of Bornholm disease occurred and, after a stormy,
painful, illness, most remitted. However, it soon became apparent that Madsen's words
concerning the variegated picture, had a real meaning, for some patients developed varying
ongoing sequelae. At the time we also had anterior poliomyelitis with approximately 20% of
these cases developing a mild pericarditis or a more sinister myocarditis. From this
latter group, approximately 5% died. Professor Roger Loria has shown that in other viral
illnesses the same sequelae occur.
It soon became apparent that the Coxsackie viruses which were the cause of Bornholm
disease could also be cardiovirulent, and that approximately 5% of these cases developed a
cardiological sequential illness from which there were some deaths. Not only so but other
diffuse symptoms occurred with neurological, muscular and glandular pathology. the term
posterior poliomyelitis was known at the time but not well recognised or defined. Indeed
by some it was ignored. However, it was observed in practice here and the cases were
recorded. Later in my work it became apparent that whilst the polio-enterovirus was the
organism responsible for classic posterior polio-myelitis, similar CNS symptoms developed
in patients affected by other enteroviruses, chief of which was the Coxsackie B group,
followed by the ECHO strain and the Coxsackie A group. In these cases, the eventual
outcome differed in that some recovered without sequelae whist others developed a chronic
illness and a proportion had the additional sequelae alluded to earlier. A register of
five groups eventually evolved as shown here and all cases are still recorded this way.
Group 1 in this group the viral illness resulted in complete recovery
within six months
Group 2 these patients, within a few years suffered an identical
recurrence with a similar timescale complete recovery
Group 3 in these cases the viral infection resulted in the development
of another single-organ pathological process. This may have been cardiac, renal, glandular
(e.g. pancreatic, thyroid etc.), or CNS, e.g. M.E. etc.
Group 4 here, the viral infection resulted in multi-organ pathology
Group 5 sadly, this was a small group resulting in fatal consequences.
In the exploration of the CNS and M.E. groups, it was soon evident that they came into the
category of Group 3 or 4 and also in our series, as with polio cases, some 20% had cardiac
sequelae which ranged from a mild pericarditis with an audible friction rub, to a much
more severe myocarditis.
This was illustrated by a young female at the time who developed M.E., but she also had a
myocarditis with ectopic beats and a pulses quadrigeminus, demonstrated on ECG's. A young
registrar of the day told her that this was due to an accessory bundle of Kent which was
responsible for the ectopic irregularity. However, when the cardiac condition responded
well to IgG IM infusion and became regular this doctor said, "You are better now, so
you can go to the dances". She replied that she felt just as ill and could not make
such an effort. He suggested a psychiatrist might help! To this she replied, "Before
being referred may I ask; what has happened to my accessory bundle of Kent?" It took
a further five to six years for an incomplete recovery. The M.E. syndrome was the main
cause of her gross fatigue and not the cardiac condition, serious though it could have
been had R not responded so well to lgG treatment. In another two cases where female
patients became pregnant whilst they still had a persistent viral infection as shown by
high antibody titres and positive VP1 tests, the babies also suffered and had
endocardialfibroeiastosis, from which they succumbed in a few months.
The following charts show the distribution of M.E. amongst male and female patients and
illustrate the percentage similarity whilst in the total numbers the females predominate.
The outcome of pregnancy in patents with persistent viral infection, of which some 20% had
M.E., is shown in the following chart. It is significant that of the 32% of these cases in
which there were foetal abnormalities, none were protected by IM lgG whilst the vast
majority of the cases with normal outcomes were so protected.
RESEARCH DEVELOPMENT
Forty years ago I became acquainted with Dr. Melvin Ramsay and his work and also Dr. E. B.
Dowsett. We had long discussions and found that our research had produced identical
results and we remained firm friends and co-operated until Dr Ramsay died. Subsequently
the Newcastle Research Group (NRG) was formed by local specialists interested in viral
mediated disease. These included Professors Mowbray, Archard, Banatvala, Russet Lane and
others from the London area as well as the late Dr Eleanor Bell, Drs Clements, Galbraith
and Professor Behan from Scotland. The collaboration of other workers in this field also
increased and has been a great help over the years. Now we have many friendly research
colleagues in the UK as well as Canada, USA, Italy and Israel. We are in constant
communication and hold an international two-day meeting each year which is of mutual help
and encouragement.
Over the years the outbreaks of enteroviral infection and resultant pathology as annotated
earlier was carefully logged and the results eventually were recorded as graphs. Later,
discussing this with my colleagues Dr Byron Hyde and Dr. E. B. Dowsett, it was interesting
to see how our graphs, which illustrated the varying epidemic proportions in those
decades, were identical. The following chart shows an analysis of the cases studied by the
author.
A careful full clinical examination is mandatory, followed by serological tests which
should include a full haematological profile and viral antibody tests with lgM and IgG and
later VP1 tests. A PCR assessment is helpful but we have found the VP1 test to be more
sensitive. The ESR test is simple but very helpful, as in M.E. it is usually negative. If
it is positive then it may raise other questions. This method we followed rigidly and
continued on an approximate monthly basis, which is essential to demonstrate virus
persistence. Later I developed the Cortisol/Prolactin post-Buspirone test which was
published in the Chronic Fatigue Journal. This has been extremely helpful as the
variations induced by hypothalamic dysfunction can be shown to have effects not only on
the dopamine/prolactin secretions but also on the Cortisol axis.
The clinical, serological and biochemical tests were followed in the M.E. cases by a
physiological CNS assessment based on the MRI and SPECT brain scans. We have done a
considerable number of these and related them to the Cortisol/Prolactin test results. The
MRI scans in about 20% of our cases show so called unidentified bright objects (UB0s).
These are related to areas of arterial perfusion and almost certainly due to fluid in the
Virchoff Robin spaces. It is interesting that in my series these results correlate well
with the retinal perivenous cuffing which can be seen if carefully looked for on
fundoscopy. One case showed these UB0s and a circle suggestive of a reaction in the circle
of Willis. Thus the MRI scan is of some anatomical value. It should be remarked that the
SPECT scans relate to the demands of CNS cells for metabolic nutrients and not to any
inhibition of supply. This may be considered to reflect on the diminished mitochondrial
metabolic activity. However, the possible cuffing of vessels by Virchoff Robin space
effusion might merit more attention, as it is possible that this may have a deleterious
effect on perfusion in some areas. However, classical perfusion takes place via small
vasonervorum of only 3.6 mu diameter and the UB0s relate to larger vessels. To the best of
my knowledge this has not been investigated.
In M.E. cases the caudate nuclei and the brain stem are the areas which classically show
this dip in perfusion abnormalities. It is significant that the visual cortex in the
calcarine nuclei of the occipital lobe is spared. Nevertheless M.E. cases do have
considerable visual difficulties and I have found that this is more common in teenage
patients. In some there is a reversal of the Argyll-Robertson pupil reaction and most have
rather dilated pupils which do not react well to accommodation. I have recorded these on
video tape seated next to a parent as a control. Sensitivity to light may be severe. The
cause of these varying visual abnormalities is not related to the occipital lobes of the
visual cortex, which as shown by the SPECT scan, are spared. The visual fibres which are
destined for the visual cortex are relayed in the. lateral genicular body in the thalamic
region and this with the brain stem is the main geographical area of pathology in M.E. The
fact that the visuocortical areas, which act as the receptor screen for the optic
radiation, appear to be spared in SPECT scans may suggest that the visual difficulties
which M.E. cases have, could be due to some aberration in the function of the areas which
receive the fibres from the visual cortex, such as the superior quadrigeminal body.' which
is concerned with reflex movements of the head and eyes in response to visual stimuli.
Owing to its position relative to the visual, somasthetic and auditory areas, the parietal
area correlates impressions from these visual, association areas. The middle part of the
inferior parietal (annular gyrus) with the pulvinar has been suggested to be responsible
for steriognosis. The link with auditory sensations at this level no doubt relates to the
heightened sensitivity to sound (hyperacusis) in some patients with M.E.
DIFFERENTIAL DIAGNOSIS
As in all diseases, a differential diagnosis should be considered. We might begin by
diagnosing a case as "CFS" - but there are many reasons for a "fatigue
syndrome". Thus to be accurate and able to state ME/CFS, all the former criteria must
be fulfilled and other reasons for M.E. excluded. Some of the pathological variants
encountered here may be illustrated by the following:-
* T.B. - one case referred a CFS and I found that he had a very high ESR
* Lyme disease - two cases both females with sub acute myelo-optico
neuritis. We managed to get a positive antibody test to the I.M. virus. One had been
previously diagnosed as MS and later she felt she had M.E. She certainly had a CFS but
this was due to the effects of the Lyme disease. The other we studied and proved the
diagnosis to be correct.
* M.S. - two cases where MRI was definitive and proved the diagnosis of
M.S. to be
correct.
* Myasthenia Gravis - two males and two females. Their symptoms were
mainly myalgic and subsequent biological tests confirmed this diagnosis.
* CJD - one teenage patent referred as M.E. was quite ill. This patient
scored high on the NRG chart but had severe pronator signs of arms when extended high
above the head. This was grossly abnormal. I videoed this case and sadly felt CJD a
possibility and, a CSF test for this was positive and conclusive. Sadly the subsequent
life was short.
* Ciguatoxic fish poisoning is reported in Australia. 10% of sufferers
of acute ciguatera progress to the state of a CFS. This is not seen in the U.K.
* Organophosphate insecticide poisoning - I have studied a number of
cases which have results which mimic M.E. quite closely and produce many identical signs.
We are in the process of organising SPECT scans for these cases and the results should
prove interesting. Full haematological investigations in these cases are routinely
performed and have been conclusive.
* Glandular fever due to the Ebstein Barr virus - in my cases has been 9 rare cause of
ME/CFS. However, from work done here the EB virus has not been shown to persist as
do the enteroviruses.
No doubt other conditions could be considered in the differential diagnosis and should be
excluded. However, the enteroviruses over these four decades have been found to be the
cause of ME/CFS in over 90% of cases.
It is not the purpose here to enter in to the various possibilities of treatment. The
adage 'Sublata Causa Tollitur Effectus' has been used in the past. Some patients with M.E.
are told by their doctors that 'as soon as the virus goes you will be better'. My reply is
to "tell that to polio cases". The point here is that, in treatment of M.E., it
is not the mere eradication of the cause but the subsequent attention to the ongoing
effects. This cannot be addressed in this paper.
John Richardson M.B., B.S.
January 1998
Steve Jervis
I am Steve Jervis. I am 39 years old and married with 3 children. I have suffered from ME since January 1994, prior to that I was an Area Sales Manager for a soft drinks company. ME Support was set up inMarch 1996 by myself and another sufferer, Jackie Pugh. The group was intended for the two villages where we live, but we found after a very short while that help was needed in other areas too. After 2 years we have 200+ members, cover all of the Midlands and beyond, and have become a registered charity. We offer advice and support to ME sufferers and their families and also raise awareness of the illness. We keep in contact with many other groups around the country so that we can work together in supporting sufferers. I am Chairman/Trustee of ME Support and find it very worthwhile work supporting fellow sufferers.
Talk
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INDEX
- Title Page
- Introduction
- Design
Sample
Procedure
- Discussion of the Results from Section 1
- Pie Charts 1-4
- Section 2 Results - Attitudes
Appeal System
Forms
Help With Forms/Process
Medicals
Stress and Anxiety
Peculiar Decisions
Length Of Time To Get DLA Allowed
Disinformation/Misinformation
Other Conditions Included
Claimants Who Asked For Reviews Of Successful Applications
Comments From Respondents Who Have Not Applied
Miscellaneous
- Improvements to Questionnaire
- Conclusion
- Appendix 1 - Blank Questionnaire
- Appendix 2 - Section 1 Raw Data, Tables 1-8
- Appendix 3 - List of Other Conditions
Sources of Help
- Appendix 4 - Rate Your Fatigue Scale
Karnofsky Rating Scale
Dr. Bell's CFIDS
Disability Scale
- Appendix 5 - Case History of M.A.
- Appendix 6 - Representative Questionnaires
INTRODUCTION
Since setting up ME Support in March 1996, it has become apparent that many ME sufferers
are having difficulties when it comes to applying for benefits.
We designed a questionnaire to find out the extent of problems with ME and the DLA system.
ME sufferers on the whole have great difficulties with obtaining this allowance, and
usually have to go through reviews and appeals before the extent of their disabilities are
accepted and their entitlement allowed.
We believe it to be unfair that even when backed by their own GP's and consultants, PWME's
are still disbelieved by the DLA system and have to "prove" that they are really
ill. This causes problems because there is no real proof - there are no medical tests to
show a definitive diagnosis. Doctors sent out to examine PWME's see only a snap-shot of
the person's state of health - which is frequently not a good indication.
We are aware that the Government is reviewing the whole benefits system, but at present we
believe that many ME sufferers are not claiming the benefits to which they may be
entitled, for several reasons:
- They are unaware of the benefits they may be entitled to.
- They are put off applying due to the complexity of the forms and the system.
- They don't have the energy, strength or support to fight the system and go through
reviews and appeals, and often give up half way through.
We are also concerned that with any change to disability benefits, it will be even harder
for PWME's to receive benefits. It would not be helpful to try and get PWME's to return to
work, as this would exacerbate symptoms and delay any return to full health.
To our knowledge, no research had been done into DLA, or other benefits involving ME
sufferers prior to our questionnaire.
DESIGN
The design of the questionnaire was half fixed choice questions with yes or no answers,
and a final section where respondents could give their own views and experiences if they
so wished. We asked PWME's to return the questionnaire even if they had not applied for
DLA. It was important to get details of respondents experiences because just quantitative
data would not give a clear picture of the situation. It is necessary to know what is
happening to claimants before these problems can be resolved.
SAMPLE
The questionnaire resulted in a self-selected sample. The questionnaires were sent out to
local support groups, who passed them onto their members. Only those wishing to reply did
so. This may have produced a biased sample through more negative responses being returned.
However, it still remains that these are major problems which need resolving. There will
also be many PWME's who are unconnected with support groups who didn't receive a copy of
the questionnaire who may be experiencing difficulties because they have no support or
help with the forms.
PROCEDURE
The questionnaire was sent out to 101 ME support groups, 3 internet newsgroups and the BBS
mailing list. The support groups and mailing list sent out a copy of the questionnaire to
their members and asked them to complete it and return it to us. The questionnaires were
posted directly onto the newsgroups, and respondents e-mailed them back directly to us. At
present, we are still receiving responses from our internet webpage where readers can
print off the form and return it to us by post. Once the questionnaires were returned, the
results were analysed before writing this report.
DISCUSSION OF THE RESULTS FROM SECTION 1
826 questionnaires have been returned over all to date. Table 1 in appendix two shows how
many positive and negative results we had - it's impossible to say how representative the
negative responses are - as these PWME's were less likely to respond to the questionnaire.
We had 574 questionnaires returned with comments added on and 72 with no comments. There
were 47 negative with comments and 133 without comments. Some of the comments on the
"yes" questionnaires were just clarifications of awards, particularly when
giving details of more than one award - which the questionnaire was not really designed
for.
On the whole, respondents who commented gave details of their experiences, some of these
experiences were good - but mostly they were bad - again difficult to say how
representative as those who experienced problems were probably more likely to add comments
- but even if many sufferers aren't experiencing difficulties in getting DLA, there are
still many ME sufferers who are, and these problems need resolving.
Tables two and three show the raw data from the first section of the questionnaire.
Although we had 826 responses, we were told of 818 applications for DLA in this section.
However, many respondents just gave details of the levels of DLA awarded and for how long,
without clearly stating at which point in the system it was awarded, so it was not
possible to record them in question one. So in total, the number of applications was
nearly 1000. Table one also shows the 180 respondents who had not applied for DLA.
The results for question two are somewhat misleading. 553 of the applications made by
respondents were successful and 99 were unsuccessful - however these figures do not
include all the claimants who gave up part way through the process, for whatever reason.
These people are shown in the "incomplete" figure (165) in table three. 330
awards were granted on the first application - i.e., on forms or medicals, without needing
to ask for a review, but 476 claims were not granted first time - this figure includes the
incompletes.
401 people asked for a review, but only 102 were successful in this. 218 asked for an
appeal, but 116 only were successful. 267 of the review claims were unsuccessful and 43
appeal claims were unsuccessful. 91 people did not ask for a review, and 74 did not ask
for an appeal. Of the total number of claims made by respondents, most had to go through
the appeal process, which seems to act as a filter - the more PWME's put through the
system, the more are likely to give up through ill health etc., and the less money paid
out by the DSS.
Table three also shows the awards where results were not yet known: 8 claims were pending
their first decision; 32 pending review decisions; and 55 pending appeals. 4 claimants
withdrew their appeals - both through ill-health and being advised to do so. 7 respondents
were still deciding whether to lodge an appeal and a further 2 respondents were still at
the review stage.
Table four shows the frequency of awards made at different levels. The levels awarded most
often was low care and high mobility - 226 awards and the least awarded was high care and
low mobility, and high care only, with only one respondent each. The second highest level
was mid care and high mobility with 131 awards.
Table five shows the number of awards at each individual level, with 290 low level care
awards, 150 middle and 48 high; 31 low mobility and 509 high mobility. The data seems to
show that mobility is granted slightly more easily than the care component, probably due
to the fact that in many PWME's it is possible to see mobility difficulties, but the
understanding of the effects of the illness is so little that the impact on every day life
and the need for help with care is overlooked.
12 respondents only claimed the mobility component. In 62 cases, only care was allowed,
not mobility, even though both components had been applied for and in 113 cases, only
mobility was awarded - nearly twice as many as for just care - highlighting the point just
made.
The frequency of the duration of awards is shown in table seven. 219 claims were awarded
for two years, 119 for one year and 106 for three years. An astonishing 49 claims were
awarded for life, and three until age 80. There may be a few problems with some of these
figures, as in a few cases, it was not possible to say whether the respondents had written
down the length of time the award was made for, or how long the respondents had actually
been in receipt of DLA, from previous claims. Worryingly, some respondents were not aware
of how long their award was for - probably because the letter stating that an award has
been made is so unclear and it can be difficult to tell that you have actually been
awarded DLA. It should state plainly that a person has been successful, has been awarded
which levels and for how long.
The least popular lengths of awards were 10 years, 41 years, 9 months, 3 1/4 years, 18
years - all with one respondent each. The respondents with 3 1/4 years stated that their
claim had been stopped part way through, but did not state how long it had originally been
awarded for. 2 respondents stated that they had been awarded 3 years back-pay and two
years forward, and 2 said they had one year back-pay and one year forward.
Table eight shows which levels were awarded for each duration of time, e.g. 59 claims were
awarded at low care and high mobility for one year. It can be seen that awards for one,
two and three years were most often made. However, on several questionnaires, respondents
stated that awards were only being made for one or two years, thus prohibiting them from
taking part in the motability scheme and causing extra stress by having to reapply every
year.
Certain levels seem to be awarded much more often than others - e.g. low mobility is quite
rare, as is high care. For awards of one year, low care/high mobility was 59 respondents,
middle care/high mobility 22 and high mobility only 15; for awards of two years - low
care/high mobility - 89, mid care/high mobility - 61 and high mobility only - 38; for
awards for four years - low care/high mobility - 7, mid care/high mobility - 3 and high
mobility only - 5; for life awards - low care/high mobility and high care only were most
often awarded. There is definitely a pattern in the awards, with low care/high mobility,
mid care/high mobility or high mobility alone being the level of awards which are most
likely to be granted.
HOW TO FILL IN THE FORMS
1. "Take your time to fill in the forms and the more detail you enclose the
better."
2. "Fill form a little each day."
3. "Give examples of what you can't do."
4. "Get good supporters (i.e. not next door neighbour)."
5. "Need a supporting GP who's seen you on a bad day, and aware of your
disability."
6. "Get doctor or consultant to fill part of form."
7. "Stress fatigue, extreme exhaustion with any activity."
8. "Give a lot of detail of symptoms and disabilities."
9. "Make answer very full and anecdotal even when this means repeating yourself
consistently."
10. "Ticks and brief answers are no good - must give as complete a picture as
possible."
11. "State help required even if you use furniture for support."
12. "Advised to use word 'frequently', rather than giving specific details."
13. "Fill in form in detail and carefully. Emphasize inability to REPEATEDLY carry
out a task without extreme fatigue/relapse."
14. "Defined three levels - bad, mediocre, and reasonable. Described what I could do
at each level and gave the percentage of time I was in each category."
15. "Many ME sufferers downplay the severity of their illness without realising
it."
16. "Be very thorough in answering each section - check sections don't contradict
each other."
17. "Write everything down, even if it doesn't seem relevant."
18. "Fatigue is a useless description."
19. "Send all correspondence and forms by recorded delivery."
20. "It's vital to keep a record of all correspondence and to be persistent."
21. "My consultant filling in the back page was helpful."
22. "Submitted comprehensive and detailed supporting evidence."
23. "Missed ticking yes/no but gave details - been told there's a template that fits
over the form, and if some boxes aren't ticked yes/no, it's automatically dropped."
This last comment is very important. Even if a claimant has missed ticking one box, it
should not stop being assessed. It is easy to miss one box, and they should not be
discriminated against because they have an illness which causes memory and concentration
problems and makes the forms even harder to fill in.
HELP WITH THE PROCESS
Welfare Rights:
17 + 13 appeals
CAB:
11 + 4 appeals
DIAL:
7 + 2 appeals
Friend/Family Member:
9
Solicitor:
8
Support Group:
7
MEA:
4 + booklets: 3
Social Worker:
4
MP:
4
Not Stated:
3
BA employee:
2
HAND (Norfolk):
2
Law Centre:
2
MIND:
1
DART Association:
1
ME Clinic Preston (letter): 1
DLA Handbook Guidelines: 1
Burnley Community Advice: 1 appeal
Money Advice Centre, Telford: 1
Shepherd's Bush Advice Centre: 1
Ipswich DAB:
1
CAPG Books:
1
CASP (Leicester):
1 tribunal
Disability Advisor in Newport: 1
Dr Findley, Harold Wood (letter): 1
Legal Rights Representative (Oxford): 1
Barton Centre, Oxford:
1
Local Disability Advocate: 1 review
Birmingham Tribunal Unit: 1
RATE YOUR FATIGUE
When most (well) people talk about being tired all the time, they are basically talking
about being at 3 (or maybe 4 on the scale). When we tell a doctor, "I'm tired,"
that's what the doctor is thinking. Maybe this scale could help explain the kind of
"tired" we feel.
1. I feel well-rested, even energetic. Life is good.
2. I'm a bit off today. Not too bad, just not a lot of pep.
3. I'm tired. I think I need to get more sleep.
4. I'm really tired. I'm getting desperate for some rest.
5. I'm as exhausted as I've ever been when I was well. I feel like I've been working
really hard, with very little sleep for 3-4 days.
6. It's a struggle to function at all. I feel like I'm walking through a lead fog. Getting
anything done is a sheer act of will.
7. I'm no longer functional. Just getting dressed has exhausted me. I'm either lying in
bed or sitting on the sofa.
8. Forget getting dressed. Just getting from the bed to the bathroom to the sofa is all I
can manage.
9. Need help to get from the bed to the bathroom. Forget the sofa. I'm too weak to sit up.
10. Can't get out of bed without help. I'm terrified that I won't have the strength to
take my next breath.
CONCLUSION
It is difficult to say how representative the data from this survey is. It may also seem
like a very small response rate when compared to the estimated number of sufferers in the
country. However, not every ME sufferer has tried to claim DLA (or even knows it exists)
or are in touch with a local support group - although we tried to reach as many of these
groups as we could. The questionnaire did show that many ME sufferers were facing big
problems when applying for DLA and shows many of the difficulties we have noticed in our
own claims and when talking to other claimants. So it appears that the issues highlighted
in this report are generally representative of problems faced by ME sufferers claiming
DLA. Many are problems which ME sufferers should not be experiencing and need rectifying
as soon as possible to make the system more fair.
"...entitlement to DLA, both the mobility and care components, does not depend on a
particular illness or disease, but on the effects of disability on a person's life. This
reliance on effects rather than on the precise diagnosis ensures that all severely
disabled people have equal access to the benefits whatever the causes of the
disability." - Letter from Rahela Miah, HSD Continuing Health Services, NHS
Executive, Leeds to one respondent.
Maybe a copy of this paragraph should be sent to each visiting doctor who assess claimants
for DLA. It sums up one of the major issues. The DSS do accept ME as a real, organic
illness, therefore claims should not be turned down due to it being treated as a
"psychological illness". AO's and doctor's stating this are not following
official guidelines and consequently are creating an unfair and inconsistent system.
Looking forward to possible future benefits reforms, we are concerned with the effect of
rewording forms and assessments and asking claimants what they can do. This does not take
into account the effect of trying something. Many ME sufferers do things because they have
to or because they have not learnt to pace themselves, and they would be discriminated
against under this system.
We also feel it of vital importance that the training of doctors, AO's and tribunal panels
is looked into as soon as possible. There are many problems which directly relate to lack
of understanding of such a complex illness. Decisions appear too arbitrary, with different
assessors making different decisions on seemingly the same evidence.
Here is a quotation from one respondent which gives much to consider:
"As a matter of interest, at a US Congressional meeting it was
said that 'to have ME feels significantly the same as an AIDS sufferer feels, two months
prior to his death."
The following section briefly sums up the main points mentioned in this report.
1. BA doctor's are unsympathetic and/or uniformed on ME and its effects - have no
understanding of the illness.
2. Tribunal panels also have little knowledge or understanding of such a complex illness.
3. Benefit refused (completely or just mobility component) because "ME is treated as
a psychological condition." - Both BA doctors and tribunal panels are not following
the official guidelines.
4. Benefit decisions are inconsistent - a lottery on where you live, who assesses you etc.
Different decisions can be made on the same information, and benefit refused to those in a
wheelchair, housebound or bedbound.
5. BA doctor's lying/inaccurate in reports.
6. Lies/inaccuracies stated at tribunal hearings.
7. When assessing benefit - condition often taken as on a "good day" - no
understanding of illness and its fluctuations. Bad days disregarded even though they are
in the majority.
8. Some BA doctors making claimants sign BLANK statements - against official guidelines.
9. Questions asked on form are too specific for ME and often are inappropriate to the
illness - because it is an illness, not a disability. Does not consider the after-effects
of attempting something. Needs a special section?
10. Words used to describe the whole process include - stressful, traumatic, humiliating,
caused a relapse.
11. Too many people are having to give up the appeal process due to the extreme negative
effects on their health.
12. Problems occurring when claimants are too ill to attend a tribunal hearing and panel
refuses to continue without them.
13. Claimants made to feel as if they are a criminal and are on trial. They have to prove
that they really are ill, despite medical backing. They want clinical evidence of the
illness - but it's impossible due to the nature of the illness.
14. People are too scared to ask for a review of parts of decisions because they worry
what they have already got will be taken away.
15. Patients' doctors medical evidence is being ignored in preference of BA doctors
reports - when they may have no knowledge of the illness, no knowledge of the patient and
no knowledge of the patient's general condition - just a snap-shot picture.
16. The whole process takes too long - some people fighting for 5 years plus - extreme
negative effects on health and finances.
17. Medical - relevant to ME? Cannot diagnose ME or judge its effects accurately through
medical. Doctor's making patients worse - no understanding.
18. Forms are too long and complicated.
19. Should continue assessing claims even if claimant missed ticking one box.
20. Cost to Government of appealing must be immense - would be reduced if many claims were
assessed accurately earlier in the process.
The BA wants medical evidence, but it is impossible to get any.
Please note that the full contents of the report complete with tables etc, as presented to the Goverment, is available on this site.
Meghan Shannon
Meghan Shannon is herself a sufferer of ME, but this hasn't stopped her being a
Co-ordinator and International Spokesperson for MPWC - Medical Professionals with CFIDS
(CFIDS is the American name for ME).
Meghan is a trained family and child counsellor and respiratory and massage therapist. She
has undertaken extensive national work with women's health and social issues as well as
counselling at the Centre for Women's Studies.
Meghan has taken part in the '95 and '96 International CFIDS Awareness Concerts and the
'95 World ME Conference in Brussels.
Meghan has testified on immune disorders concerning health workers before the Centre for
Disease Control, Dept. Health and Human Services and the National Institute for Health.
She has talked at National and International level on numerous occasions about other
subjects.
On a personal level Meghan is also an accomplished guitarist and folk singer and has
organised many concerts.
Talk MEDICAL
PROFESSIONALS WITH CFIDS
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WELCOME
Thank you for inviting me to share this vital information that I have collected concerning
medical professionals with this nebulous/mysterious disease. The US Center for Disease
Control has called it Chronic Fatigue Syndrome. However, when I have testified before the
Office of Research for Women in Health at the National Institute for Health in Washington,
DC on June 6, 1991, I called it Acquired Immune Dysfunction Syndrome, non-HIV. Not all
Medical Professionals with CFIDS (MPWCs) feel comfortable with this label.
THE FACTS ABOUT HEALTH CARE WORKERS
Health Care Workers are getting Sick.
We are being left without health care and we live under the poverty level. We are a drain
on the society.
Cluster outbreaks of ME/CFS/CFIDS, etc; have been documented since 1934 and possibly
earlier.
The National CEBV (Chronic Epstein Barr Viral) Syndrome Association in Portland, OR, did
an in-depth survey with the Minnan, Inc., Glenview, IL on 25 February 1986. The results
showed that Health Care Workers were at the highest risk, teachers were the second
highest.
Dr Bell, a well-respected medical doctor from Harvard who works with children with ME, has
been quoted as saying that; "Health Care Workers are at the highest risk and, indeed,
are getting sick."
In 1992, at the Albany, New York Conference for Chronic Fatigue Syndrome, Dr Leonard
Jason, et al, presented compelling evidence that Health Care Workers were at the highest
risk.
It is no accident that most support group leaders in the US are from the health care
field. When I say health care field, I include, RNs, Medical Technicians, Secretaries,
Respiratory Therapists, MDs etc.
As a result of my statement in 1991, Gail Dahlen, RN, former OB/GYN lead nurse and
instructor of the Long Beach OB Hospital, and I, started a support group for MPWCs in
1992. Since 1994, we have advertised in the North Carolina CFIDS Support Group Journal 5
or 6 times. We now have nearly 600 MPWCs in our data and possibly 100s more that have not
responded back to us from the first contact. This Journal reaches 20,000 people. Recently
through the efforts of the editor of our newsletter (Lori Clovis), we are now
"on-line" and are receiving at least 2-3 letters a day, from health care workers
who are ill.
OBSERVATIONS
Some things that we have noticed that may be of interest to the scientific world are:
The Hepatitis B vaccine seems to trigger at least 10 of the people in our first group of
150. When other are asked directly if they received the Hepatitis B vaccine, we find that
there's a possibility of more whose ME started with that vaccine.
Most have worked in emergency care, or intensive care units, such as Gail and I, and
become ill when a "flu" was in the community and we had treated those people.
You may see our stories in the book that says "MPWCs Stories."
It appears that the MDs at highest risk are OB/GYNs and General Practitioners.
ME - MY STORY
I know exactly when and where I got sick. It is well documented in my medical records as
well as in the JAMA, 1983. I was working at Children's Hospital in San Diego in 1980 when
an outbreak of an Adeno virus went through the hospital and killed several children. It
infected about 10 - 15 % of the staff over the next 3 years and continues even to this
day.
Since then I have learned that the lead neo-nataloigst, Dr Morton Cohen, who tested
culture-positive as well as high titers for the Adeno, committed suicide in the late
1980s. He was diagnosed as "depressed."
An RN named Sally worked at the hospital during the viral incident in the 1980s. She
continued to work there through 1993. I have recently learned that she has also committed
suicide. She was diagnosed as being addicted to Vicodin, which she was taking for severe
pain and lack of energy. She was "rehabilitated" from her drug addiction in
1992. Her physical illness was never addressed. Her pain was unbearable and she killed
herself.
MY THOUGHTS
As my friend, Gail Dahlen, expresses so often, "How can the very institutions to
which we dedicated our lives turn their backs on us and allow us to either commit suicide
or live on the meager social security benefits that put us well below the poverty
line?"
Having spoken with Dr Elaine DeFreitis, formerly of the Wistar Institute in Pennsylvania,
and Dr Garth Nicolson, of the MD Anderson Cancer Center, Houston, Texas, I agree with them
that this is a multiple insult to the immunological and neurological systems of the body.
Of course the health care workers are at the highest risk, not only to the viruses and the
bacteria and the mycoplasma, but also to environmental toxins that are the common in a
hospital environment.
I wonder, at times, if ME kicks in auto-immune responses such as LUPUS, MULTIPLE
SCLEROSIS, DIABETES, RHEUMATOID ARTHRITIS, etc. Could it be that if someone studied the
health care workers we might find some common understanding of the genesis and course of
ME and related disorders if we are to avert it entirely, or to intervene at the earliest
stages when recovery is more easily achieved. Furthermore, data gathered from ME
investigations will undoubtedly lead to discoveries in related diseases and disorders.
· "We have a problem in the USA in regards to funding raised for ME and the use of
the funds. It seems we have some misappropriations of funds. The Center for Disease
Control (CDC) has listed CFS/ME a "Priority 1, New and Reemerging Diseases," and
the Health and Human Service Department sponsored a nationwide video teleconference to
"educate" physicians around the country about the disease. All of this is
supposed to convince the ME community as well as the medical community and the general
public that the CDC and the NIH (National Institute for Health) are making a serious
effort to investigate the aetiology, pathophysiology, and treatments of this disease
which, by their own 1994 estimates, affects as many as 220 per 100,000 Americans.
Unfortunately, recent testimony by the NIAIN (National Institute for Allergy and
Infectious Diseases) Directory Anthony Fauci before the Congressional Health and Human
Services Sub-committee reveals that, again the government has lied."
(Copy of editorial by Lori Clovis, MA).
· Dr David Bell and Dr David Streeton, have been working on a concept of neurally
mediated hypotension and has found that "all the patients with ME that he studied had
low body water, if you will. They were functionally dehydrated. And not only that, but the
number of red blood cells was low also." (From an interview with Dr Charles Lapp, MD
after the Australia conference on ME, February 1998)
· Dr Garth Nicolson, a well respected scientist from the MD Anderson Clinic, Texas, has
found that not only do the Gulf War Veterans have a MYCOPLASMA INGONITAS that most ME
patients have it as well. There is a simple therapy, antibiotic therapy. (Intl. Journal of
Occupational Medicine, Immunology, and Toxicology, Vol 1 - 1996, author Dr Garth
Nicolson). In this article Major General Ronal Blanck, commanding officer of Walter Reed
Army Medical Center in Washington, DC, stated "that the symptomatology of Desert
Storm Illness (DSI) is analogous to that of CFIDS"
· In a statement by Elaine Defreitas, PhD and Hilary Koprowski MD regarding CFIDS/ME to
the US House of Representatives Committee on Energy and Commerce Subcommittee on Health
and the Environment, 16 April 1991, Washington, DC, Dr Defreitas spoke out with a very
strong voice; "Let us note at the beginning that CFIDS or CFS/ME is not about being
tired. Researchers have demonstrated numerous abnormalities of the immune, muscular,
cardiovascular, and central nervous systems in people with CFS/ME; it is truly a
multi-system disease with a strong component of immune dysfunction. In fact, one respected
scientist called CFS/ME "A disease of acquired immunodeficiency."