WHAT YOU NEED TO KNOW ABOUT M.E - The ME Association
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The ME Association
FACTSHEET
WHAT YOU NEED TO KNOW ABOUT M.E.
M.E. (myalgic encephalopathy or
encephalomyelitis) is a complex
multisystem disease with a wide
range of disabling symptoms.
This leaflet provides information to
help in the understanding of M.E, its
symptoms and treatments.
n M.E. is estimated to affect Research Council and NICE history, physical examination,
around 0.2-0.4% of the population (National Institute for Health and exclusion of other possible causes
(c.265,000 people in the Care Excellence). of symptoms and the application
UK) – including children and of diagnostic criteria. There
adolescents. n The NICE clinical guideline,
are currently no blood or other
which is aimed primarily at the
n M.E. can cause greater diagnostic tests available.
NHS, is currently being rewritten.
functional impairment and poorer n M.E. is not a minor ailment
This follows stakeholder pressure –
quality of life than many other and there is a wide spectrum of
including from the ME Association
serious medical conditions, severity. Around 25% of people
– that the existing guideline
including multiple sclerosis and are severely affected – being
was unfit for purpose. The new
cancer. housebound, or bedbound and
guideline has been delayed due to
n M.E. has a characteristic clinical often requiring a wheelchair if they
the coronavirus but is expected in
feature known as post-exertional can mobilise – at various stages
2021.
malaise – a delayed exacerbation during the illness.
n M.E. affects all social classes
of symptoms that can follow even n M.E. can affect some people
minor physical or mental exertion. and ethnic groups.
very severely, leading to atypical
n M.E. research has determined n M.E. is the commonest cause of seizures, speech and swallowing
significant abnormalities in the long term sickness absence from difficulties and extreme intolerance
central nervous system, immune school.
system, endocrine (hormone n M.E. can affect more than one
producing) system, and in muscle family member – suggesting that
(causing energy metabolism genetic factors are involved.
impairment).
n M.E. has been estimated to cost
n M.E. is classified by the World
the UK economy £3.3bn each year
Health Organisation (WHO) as
(see page 2).
a neurological disease. WHO
classification is recognised by the n M.E. is diagnosed following
Department of Health, the Medical careful assessment of clinical
The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n Telephone 01280 818963
www.meassociation.org.uk n Registered Charity Number 801279
1 MAY 2020
ME FACTSHEET
WHAT YOU NEED TO KNOW ABOUT M.E.
to light and sound. These people weeks before function is restored.
will be bedbound, they require PEM can also trigger a relapse;
continuous 24-hour care and may
n Activity-induced muscle
need tube-feeding.
fatigue precipitated by trivially small
n M.E. in most cases is triggered exertion (physical or mental) relative
by a known event such as an acute to the patient’s previous activity
infection. People with M.E. often tolerance;
report that they don’t feel as though
n Cognitive dysfunction –
they have recovered from the
problems with short-term memory, between activity and rest so as not to
symptoms even after the infection
concentration, word-finding; exacerbate symptoms. This is known
has passed. In other cases, M.E.
as Pacing.
can develop following different n Sleep problems – sleeping too
triggers. little or too much, vivid-dreams, Most people with M.E. will make
unrefreshing sleep; some degree of improvement
n M.E. is considered a fluctuating
over time. However, a significant
condition – meaning that the n Ongoing flu-like symptoms –
minority remain permanently and
symptoms can vary in form and including sore throats and enlarged severely affected and many will see
intensity throughout the day, from glands, fever-like sweats, lethargy; fluctuations in severity over a period,
day to day, and week to week –
n Orthostatic intolerance – problems with some getting progressively worse.
making it very unpredictable and
hard to manage. with pulse and blood pressure Nomenclature and definitions of
control leading to feeling faint/dizzy M.E.
n M.E. is a devastating disease when upright.
with no established biomarker. M.E. (myalgic encephalomyelitis)
Other common symptoms include: is the medical name that was
n Research funding has been
n Pain – which can involve muscle, introduced by The Lancet to
woefully inadequate from central
joints and nerves, describe an outbreak of the illness
sources with much knowledge
at the Royal Free Hospital in London
coming from studies funded by the n Problems with balance and with in 1955. M.E. is the name that is
charity sector. The ME Association temperature control, preferred by people with the disease.
has invested over £1million in
biomedical research and continues n Sensitivity to light and sound, M.E. was renamed as CFS (chronic
to believe research offers the best n Alcohol intolerance, fatigue syndrome) by doctors in both
hope for greater understanding the UK and USA during the 1980s.
and effective treatment. n Gastrointestinal symptoms People with M.E., as well as patient
support charities and a significant
Symptoms Treatment
number of health professionals, do
M.E. is diagnosed following a Drugs can be prescribed to help not feel that CFS is an appropriate
significant reduction in pre-illness manage or control some symptoms name to use as it trivialises the
activity levels and an inability to such as pain and sleep disturbance. level of suffering, ignores the
return to normal function. The most There is no curative treatment – multisystem symptomatology and
important diagnostic symptoms are: although several drugs are being can encompass people with ‘chronic
assessed in clinical trials. fatigue’.
n Post-exertional malaise/symptom
exacerbation (PEM) – often with The most important aspect of ongoing The term ‘encephalomyelitis’
a delayed impact, lasting days or care is activity management – which is not a pathologically proven
involves striking the right balance explanation for what may be
The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n Telephone 01280 818963
www.meassociation.org.uk n Registered Charity Number 801279
2 MAY 2020
ME FACTSHEET
WHAT YOU NEED TO KNOW ABOUT M.E.
happening within the nervous been delayed due to the coronavirus ISSUE 154 n SPRING 2020
system. Consequently, it often but is expected in 2021.
causes dissent among doctors. The ME Essential
The Medical Research Council
ME Association therefore proposed
(MRC) regards ME/CFS as a
the term ‘encephalopathy’,
research priority and issued a
meaning a significant disorder
highlight notice to encourage
of brain function, and Myalgic
research applications – especially
Encephalopathy has been
in relation to immune system
accepted by NICE and others as an
dysfunction and neuropathology.
alternative. GP SURGERIES
AND CLINICS
In January 2020, a major new
- IMPORTANT
INFORMATION
In 2015 the influential Institute of INSIDE
application from the ME/CFS SEE PAGE 14
Medicine (now the National Academy ME AWARENESS WEEK
Biomedical Partnership was This year’s ME Awareness Week features ‘The Lost
of Medicine) in America published a
Years’ and ‘Focus on Symptoms’ and we’ll be
submitted to the MRC that would
telling your stories in this issue and the next one
A-Z OF SYMPTOMS
fully encompassing report – Beyond
result in a genetics study on
Dr Charles Shepherd’s extended Management
File explains everything you need to know about
ME/CFS: Redefining an illness –
symptoms and how to deal with them in our
20,000 people with the condition.
eight page lealfet with this issue of ME Essential
CORONAVIRUS
that concluded: The latest advice and recommendations. How
This £3.5million bid could provide
to recognise the symptoms and how best to
protect yourself.
answers to important questions about
‘ME/CFS is a serious, chronic,
causation. The ME Association has
complex, and systemic disease Our quarterly magazine
been involved in this vital initiative
that frequently and dramatically since the beginning and we hope to ME Essential
limits the activities of affected share some good news about the
patients. In its most severe form,
goes out to all members
funding very soon. Please register
this disease can consume the your interest as it will need the full If you would like to receive it
lives of those whom it afflicts. support of the M.E. community if it is regularly, please phone our office
It is “real.” It is not appropriate to succeed. on 01280 818 963 or email:
to dismiss these patients admin@meassociation.org.uk
However, in general, research
by saying, “I am chronically remains severely underfunded in
fatigued, too.”’ the UK with most of the contribution ME CONNECT
still coming from the small charity
help
In 2017 a 2020 Health report –
sector. The ME Association Ramsay We’re here to
Research Fund has invested over
Counting the Cost – estimated the
£1million in biomedical research in
economic cost of ME/CFS to the UK
economy is around £3.3 billion per
recent years and continues to seek Do you need to talk?
good quality applications.
annum. CALL US AT
The 2007 NICE Guideline on ME/ ME CONNECT ON
CFS is currently being re-written
following criticism from the patient 0344 576 5326
community that it was no longer fit
for purpose. The ME Association is 10am-12noon, 2pm-4pm,
a stakeholder in the review process 7pm-9pm
and Dr Charles Shepherd is an every day of the year
expert witness on the guideline
committee. A new guideline has
The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n Telephone 01280 818963
www.meassociation.org.uk n Registered Charity Number 801279
3 MAY 2020
ME FACTSHEET
WHAT YOU NEED TO KNOW ABOUT M.E.
© ME Association 2020. No part of this publication may be
reproduced without the written permission of the ME Association
The ME Association: FORWARD ME AND OXFORD BROOKES UNIVERSITY ANNOUNCE
RESULTS OF PATIENT SURVEY
ON CBT AND GET IN ME/CFS
n Provides information on M.E. and campaigns on issues such as research, the
NICE guideline, NHS service provision and care
n Provides support through our ME Connect helpline, ME Essential members
magazine and our website and social media
EVALUATION OF A SURVEY EXPLORING THE EXPERIENCES OF ADULTS
AND CHILDREN WITH ME/CFS WHO HAVE PARTICIPATED IN CBT AND GET
n Funds biomedical research – including the UK ME/CFS Biobank which is
INTERVENTIONAL PROGRAMMES
EXECUTIVE SUMMARY FROM FORWARD ME
managed by an expert team at the London School of Hygiene and Tropical This survey was commissioned by Forward ME following
discussions between the Chair and Vice-Chair of the NICE
Guideline Development Group, Members of Parliament and
The full report follows this executive summary. We set out
below the key findings that we have drawn from it. We
acknowledge that there may be some bias in the results of
Medicine – through the Ramsay Research Fund
the Chair of Forward-ME in order to provide NICE with up to the survey due to its promotion by ME charities rather than
date data and additional patient evidence relating to long- NHS organisations.
term outcomes and harms following Cognitive Behavioural
There are also limitations in self-reported data however we
Therapy (CBT) and Graded Exercise Therapy (GET).
feel the scale of the response demonstrates the strength of
The survey was designed by a steering group of Forward feeling and harm on the issue.
ME members and an independent research unit within
n Is a member of the Forward ME Group of charities and patient
Oxford Brookes University, Oxford Clinical Allied Technology
and Trials Services Unit (OxCATTS), which was engaged DO YOU EXPERIENCE
to undertake the survey, collate, analyse and report on the POST-EXERTIONAL MALAISE?
response.
100%
Due to the short timescales involved, the survey was only
representatives that is chaired by the Countess of Mar, and the CFS/ME
available online and it was not possible to allow paper
responses. Please note, this will mean that a number 80%
of people with ME, particularly those who are severely
affected, will not have been able to have their experiences
considered. 60%
Research Collaborative, chaired by Professor Stephen Holgate, which aims to
The survey was designed to gather evidence from people
who have been offered CBT and/or GET based on the 40%
current (2007) NICE Guideline since 2007. Much of the
evidence received echoes what we already know from
20%
raise the profile of M.E. and attract greater research investment
previous surveys and feedback received by charities over a
number of years.
YES NO
WWW.MEASSOCIATION.ORG.UK
Further information:
Go the extra mile for
M.E. Research Summary ME
Ramsay Research Fund Factsheet How you fundraise for the ME Association
and for ME is entirely up to you. We are here
to support you and to help you to put
ME Association: ME/CFS/PVFS An Exploration of the Key Clinical Issues
the FUN into fundraising.
ME Association: An Index of Published ME/CFS Research
ME Association: Website
ME Association: Facebook and Twitter and Instagram
Our fundraisers all share a passion cannot. But for others, who cannot
The ME Association Diet & Nutrition
for fundraising for ME. Perhaps a or who should not be pushing
friend or family member has this themselves physically, we have a host
cruel illness, or perhaps they have it of creative ideas to get you started.
Our dietary advisers provide key
themselves. How we fundraise is very
website shop:
The world is your oyster when it
individual – combining our own unique
comes to fundraising! To find out more
talents, ideas and ambitions with our
and keep in touch, look for our private
information to help you maintain a
determination to raise as much money
fundraising page on
as we can.
Facebook called ‘Purple
Many people do physical challenges Fundraisers for ME’. Then
You can download leaflets and buy healthy diet even when ill.
– for someone they care about who ask to join us!
gifts from our website shop or by
General Information
downloading and completing our Order
Form. If you are a member of the ME Guides to going to university and travel M.E. Hurts!
“One day I caught a virus… and I never got better…..!”
Association, you will receive an order insurance – with other great leaflets. M.E. often starts that way – with
something like a ‘flu virus that knocks
you sideways. You expect to get over
form with your quarterly magazine.
it in a week or so, but weeks, months
Fundraising Leaflets
and even years go by, and you feel
no better… We believe that well over
250,000 people in the UK are living with
You’ll be welcome to download our free
this nightmare of an affliction.
The following literature is available to
M.E. stands for myalgic
encephalomyelitis. It has other names,
including CFS – chronic fatigue
fundraising leaflets.
syndrome - but the end result is always
download or order:
the same: M.E. hurts! It hurts in so many
ways - Physically. Mentally. Socially.
Financially. Emotionally…
“At its severest M.E. can be fatal. The very
But don’t just take our word for it – we
severest lie bedbound in dark rooms, tube fed,
Benefits & Social Care
asked our supporters to tell us what M.E.
Medical Management
felt like, and this is what they told us. catheterised, paralysed, in horrific pain and
unable to tolerate even a slight comforting
M.E. is REAL. It’s physical! touch. Merryn, was just 21 when she died”
Leaflets about the medical management Includes guides to Universal Credit and
Pain and extreme tiredness are all too Clare
common. Pain that pain killers barely
touch. Your senses go into overdrive – M.E. shatters families and
destroys friendships
PIP and obtaining Social Care.
light and sound can hurt. You sleep but
of ME/CFS – 51 topics covered.
wake unrefreshed. Or worse still, you
Around a quarter of M.E. sufferers are
don’t sleep.
so badly affected that they cannot leave
“I have to choose between brushing my teeth their homes, or even their beds. For
and washing my hair – I don’t have enough some, the most social part of their day is
when someone caring for them comes
energy to do both”
ME Connect ‘To Whom It May Concern’ letters
in to check up on them.
Dawn
For many, the effort of just talking on the
phone is too much.
Useful leaflets based on the concerns For when you need to explain to others
You can’t see M.E!
M.E. is invisible. You cannot tell, just by
looking at someone, just
expressed by people who have used how M.E. can affect your ability to do
how ill they feel; how much
pain they are in; or how
much energy it is taking just
to talk to you.
our ME Connect helpline. things.
The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n Telephone 01280 818963
www.meassociation.org.uk n Registered Charity Number 801279
4 MAY 2020
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