Just explaining the basic facts of M.E.falls far short of really getting
across what a hell on earth M.E. really is. In thinking about M.E. and all
of the terrible things that are happening so unfairly to so many wonderful
innocent people year after year, and how extremely severe a disease it can
be physically, many of us keep coming back to one word. Shocking. Above all
else, M.E. is a shocking disease.
This paper explains why M.E. is THE shocking disease.
(You may like to show this paper to friends and family members to help them
understand better what it means to have M.E.)
M.E.: The shocking disease by Jodi Bassett March 2010.
In trying to explain how extreme the suffering is, and how urgent the need
is for genuine advocacy in Myalgic Encephalomyelitis (M.E.), just relating
the basic facts isn't enough. I can tell you the following basic M.E. facts:
M.E. is similar in a number of significant ways to illnesses such as
multiple sclerosis (MS), Lupus and Polio.
M.E. occurs in epidemic and sporadic forms, over 60 M.E. outbreaks have been
recorded worldwide since 1934.
What defines M.E. is a specific type of acquired damage to the brain (the
central nervous system) caused by a virus (an enterovirus). It is an acute
(sudden) onset neurological disease initiated by a virus infection with
multi system involvement which is characterised by post encephalitic damage
to the brain stem.
The term M.E. was coined in 1956 and means: My = muscle, algic = pain,
Encephalo = brain, mye = spinal cord, itis = inflammation. This neurological
damage has been confirmed in autopsies of M.E. patients.
M.E.is primarily neurological, but also involves cognitive, cardiac,
cardiovascular, immunological, metabolic, respiratory, hormonal,
gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. causes
an inability to maintain bodily homeostasis. More than 64 individual
symptoms of M.E. have been scientifically documented.
M.E. can be more disabling than MS or polio, and many other serious
diseases. M.E. is one of the most disabling diseases there is. More than 30%
of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are
severely limited with even basic movement and communication. In some cases
The hearts of M.E. patients only pump barely pump enough blood for them to
stay alive. Their circulating blood volume is reduced by up to 50%. Thus
M.E. patients are severely limited in physical, cognitive and orthostatic
(being upright) exertion and sensory input. This problem of reduced
circulating blood volume, leading to cardiac insufficiency, is why every
brief period spent walking or sitting, every conversation and every exposure
to light or noise can affect M.E. patients so profoundly. Seemingly minor
'activities' can cause significantly increased symptom severity and/or
disability (often with a 48-72 hour delay in onset), prolonged relapse
lasting months, years or longer, permanent bodily damage (e.g. heart damage
or organ failure), disease progression or death.
If activity levels exceed cardiac output by even 1%, death occurs. Thus
the activity levels of M.E. patients must remain strictly within the limits
of their reduced cardiac output just in order for them to stay alive. M.E.
patients who are able to rest appropriately and avoid severe or prolonged
overexertion have repeatedly been shown to have the most positive long-term
M.E.is a testable and scientifically measurable disease with several unique
features that is not difficult to diagnose, even within just a few weeks of
onset, using a series of objective tests.
M.E.is a debilitating neurological disease which has been recognised by the
World Health Organisation (WHO) since 1969 as a distinct organic
neurological disorder. M.E. is classified in the current WHO International
Classification of Diseases with the neurological code G.93.3.
Many patients with M.E. do not have access to even basic appropriate medical
care. Medical abuse and neglect is also extremely common and often results
in the disease becoming severe (and in some cases, death is caused).
Governments around the world are currently spending $0 a year on M.E.
In my opinion, these facts however, fall far short of really getting across
what a hell on earth M.E. really is. In thinking about M.E. and all of the
terrible things that are happening so unfairly to so many wonderful innocent
people year after year, and how extremely severe a disease it can be
physically, I keep coming back to one word. Shocking. Above all else, I
think M.E. is a shocking disease. These are a few of the biggest shocks I've
faced, and that others with M.E. also experience:
1. The shock of extremely severe sudden illness and disability. The first
big shock is how quickly and completely your entire life can change forever.
Having your body suddenly act very differently and not be able to do all the
things you have done many thousands or millions of times before, is surreal.
This is especially so when this occurs suddenly from one day to the next, as
it does with M.E. The sense of unreality can be so strong that you almost
wonder why everyone else is still going on as if nothing had changed and
everything was normal.
For me, in March 1995 at the age of 19, I went from being very healthy and
happy one day to having problems standing upright for more than a few
minutes at a time, the next. I also suddenly had severe problems sleeping,
thinking and remembering, speaking and understanding speech, eating many
foods that I previously tolerated perfectly well, coping with even low
levels of noise and light and vibration, coping with warm weather, sitting,
with my heart and blood pressure, with any type of physical or cognitive
activity causing severe relapse unless within very strict limits as well as
memory loss, facial agnosia, learning difficulties, severe pain, alcohol
intolerance, blackouts and seizures, intense unusual headaches, , burning
eyes and ear pain, rashes (and other skin problems), severe nausea and
vertigo, total loss of balance when I closed my eyes or the room was dark,
muscle weakness and paralysis, and so on. I suddenly had over 60 individual
symptoms, and could only do 40% or less of my pre-illness activities.
It's a bit like one day waking up and suddenly everyone around you is
speaking another language and looking at you strangely for not being able to
understand what is being said. Or from one day to the next the sky suddenly
going from blue to yellow, or all chocolate suddenly tasting like fish or
olives, and bananas tasting like broccoli - but only to you. At first, not
only is it very hard to just accept, but also to really believe it is
happening, and that it won't just go away as suddenly as it came. It's all
just such a big shock.
2. The medical system shock. As if that weren't enough all on its own, the
next big shock involves lifelong beliefs about our medical system. You soon
find out that the disease you have is one of those that is treated
differently from many others, that not every disease is viewed equally, and
that bizarrely this has nothing at all to do with the type of disease or the
severity of the disease or its symptoms, or testable abnormalities, or the
possibility of death, but other non-scientific and non-medical factors. It
has to do with political and financial factors, and marketing.
You find out that some diseases get you 'red carpet' treatment or some see
that you treated very well, others adequately, and unfortunately several
leave you with no real care at all. Even worse, not only with no appropriate
care at all, but often subject to serious mistreatment from the
professionals meant to be there to help you.
Most people trust absolutely that if they get severely ill, they can go to
an emergency room and be given the appropriate medical care. I used to trust
in that too. But I was to soon find out the hard way that that didn't apply
to me anymore. If I went to the emergency room, there was an enormous chance
I'd not only get no help at all, but be ridiculed into the bargain or told
'to stop exaggerating' or refused the appropriate tests (and have older test
results ignored). I may then be told, illogically, and despite all the
evidence to the contrary that 'there is nothing wrong with you, go home and
let us care for someone who is really ill.' I'd be far more likely to come
out of the emergency room far sicker than when I'd gone in (in crisis), as
well as being verbally abused and insulted as well.
Dealing with GPs and specialists is also much the same most of the time, for
those with M.E. Probably the most common treatment recommended to patients
with M.E. is graded exercise therapy (GET). (Both formal and informal
programs.) This is a 'treatment' that can and very often does leave M.E.
patients, including children, far sicker afterwards for months, years or
longer (wheelchair-reliant, bedbound, needing intensive care etc.). It can
also cause death. While it may help some of those with other illnesses very
different to M.E., it has a ZERO percent chance of providing any benefit to
M.E. patients. If even a tiny percentage, say 2%, of almost any other
patient group were made as ill and disabled by any treatment (as M.E.
patients are by GET) it would be a huge scandal. It'd make all the papers
and there would be all sorts of legal actions and enquiries, and outpourings
of public outrage. Yet the incidence of M.E. patients being recommended, or
forced or coerced into, this torture ...sorry, 'treatment' is growing every
year. Nobody much cares or even knows. It's more than shocking or just very
cruel, it's obscene.
Most people have no idea that all this medical abuse occurs regularly, to
people just as ill or even far more ill as those with MS or Lupus. When you
do try to tell them most often they refuse to believe it could be true, so
strong is their belief in the fairness and logic of our health system and
how much thought, objectivity and careful investigation supposedly goes into
giving a final diagnosis and recommending treatment. It's a shocking loss,
this loss of belief in a health safety net and our medical system being
based on logic, science and due care. It's such a comforting belief, it's
hardly surprising people don't want to give it up, even if it is false.
Thanks to inappropriate medical care, I, as with many other M.E. patients,
soon struggled to do even 5% of the activities I had pre-illness. I was made
housebound and 99% bedbound, and have remained so for the last 10 years. My
heart-rate skyrockets and my blood pressure drops dramatically after just a
few minutes of standing or other overexerting activity. It feels like a
heart attack in every organ, and as if my heart is about to explode, or just
stop. (The highest heart-rate measurement I've had is 170 bpm and the
lowest blood pressure measurement is 79/59 - both were taken at times when I
was only moderately ill, relatively speaking, nowhere near my most severe
state. Scary.) I have spent most of the last decade, alone and in pain in a
dark quiet room, coping with many different and hideous symptoms. I accept
that some people get ill, and that I am at risk of this as much as anyone.
What is hard to take is that, like so many M.E. patients, my reaching such a
severe disability level and losing so much of my life was completely
unnecessary and would very likely not have happened had I had even the most
basic appropriate support in the beginning.
3. The welfare system shock. Despite being extremely ill and disabled, M.E.
patients are often shocked to find that getting the basic welfare payments
is very difficult or impossible. Bizarrely enough, the system is set up in
such a way that you can actually be too ill to qualify, as so many hoops are
required to be jumped through to lodge a successful claim, without which the
claim is denied. Ironically, the government agencies seem to have little
interest in this conundrum, nor in how much sicker jumping through all their
hoops makes you long-term. The ignorance of doctors and their inability to
give you an unbiased examination is also a huge problem. Again, what is far
more important to them is the name and reputation of your disease, not how
ill and disabled you are. It is not uncommon to find instances of M.E.
patients living for years with no disability payments, having to live on the
mercy of family, or becoming homeless and having to eat out of bins.
4. The media shock. The public largely trusts the information given about
different diseases in the media. I did too, and I still do largely, provided
the article is about MS or cancer. But like many M.E. patients, I was
shocked to find out that when it came to diseases like mine, there was no
onus at all on the reporter to be accurate. While a furore would ensure if
articles made up entirely of false information were printed about MS or
cancer, almost every article that I read about M.E. was of this unbelievably
low standard, yet nobody seemed to care at all.
Similarly, the outrage when certain groups are made fun of in what is deemed
an offensive manner, simply does not occur when it's M.E. that is being
ridiculed. For some reason M.E. patients (in the UK particularly) are fair
game. This is because despite the fact that our governments have created
laws designed to stop discrimination on the basis of gender, race and
disability and so on, discrimination against M.E. patients is not only
allowed, but is actively supported and promoted by government. (For
information on why this occurs, see What is M.E.?)
5. The human rights groups shock. While the big human rights groups seem
very eager to help many other groups and even individuals facing small or
large problems, they seem completely unwilling to even look at the severe
abuse of human rights facing perhaps a million M.E. patients worldwide, let
alone do anything at all to actually help. This when even the smallest
action on their part, the smallest indication of support for the M.E. cause,
would be such a huge step forward for the cause. Such ignorance and
injustice is shocking.
6. The friends and family shock. What makes coping with all these things
unimaginably worse is having to do so with little if any support from
friends and family - and even while facing abuse or ridicule from friends
and family. Some patients are even disowned by their whole family, or all
but a few members. Loved ones often believe the same financially-motivated
media and government-sanctioned nonsense about your disease as the doctors
do. They often accept the 'miracle cure' stories in the media featuring
people with a hundred different mild (and psychological) or transient
diseases jumping up and down about how they have been 'cured' by the mumbo
jumbo money-making scam of the week - despite the fact that NONE of these
stories features actual M.E. patients (or even patients with diseases
similar to M.E.). It's such a huge shock that those you love could see you
so ill and refuse to support you and that they have more trust in doctors
than in your integrity. They can't believe that if you were seriously ill, a
doctor could miss it, even though that is exactly what has happened. They
can't believe that the media would be allowed to print completely fictional
information about your disease often based on mixed and entirely unrelated
patient groups, even though they are doing just that. Not having medical or
media (or government) support makes getting support from loved ones almost
Having loved ones not stand by you hurts a lot, in many ways. It takes yet
another huge swipe at what self-esteem you have left after being treated
like dirt by your trusted doctors and welfare departments, leaving study
incomplete and/or losing your job and your ability to support yourself
and/or being denied the services of a carer when you urgently need one.
After so many attacks on your integrity and worth you can't help but be worn
down by it all. Particularly when you're so ill and even more so if you are
under the age of 18 when you become ill. You inevitably feel, not depressed,
but as if you must personally be unworthy somehow of any type of care or
compassion. Such messages inevitably sink in to some extent after constant
repetition, no matter how educated, strong or mentally fit you are.
7. The M.E. charities and support groups shock. Realising that very, very
nearly all of the charities and support groups that claim to be there to
help you actually do not represent or support you at all and are actually
hostile to your interests is yet another huge shock. You go to a group that
you trust finally to give you the unadulterated facts and to be working
towards improving things and all you get is more abuse and misinformation.
Just as bad, you also don't get all the important information about M.E.
that could make an enormous positive difference to your life and to your
Those few groups and individuals that are involved in genuine advocacy are
often able to do very little due to the physical constraints of M.E., the
poverty associated with M.E., and the lack of public and other support. M.E.
patients are just too ill to fight effectively for themselves like AIDS
patients did. They can't rally or march and many can only barely read or
write now. AIDS patients also often have an early asymptomatic period of
illness, which enables significant contribution to activism - but for M.E.
patients the severe symptoms begin on day one.
8. The M.E. advocacy nightmare shock. Perhaps most shockingly of all, when
you try to do some advocacy yourself and tell people about the double
standards, discrimination and unfair treatment, and show them mountains of
solid facts, you are met with disbelief. People cannot or will not believe
that doctors could be so cruel, unscientific, ignorant and illogical.
M.E. itself also seems to work against you, in an unexpected way. People say
it's too severe and there are too many symptoms. The entirely unique way we
respond to even trivial exertion and are so disabled by it, instead of
inspiring sympathy, seems to actually inspire disbelief. People seem to
(bizarrely) believe that there must be some limit on how bad a disease could
be, and that such severe illness couldn't be possible long-term. That you
couldn't possibly be too ill to sit or stand up, use the phone, speak or be
spoken to, listen to music, write a letter, spend time in hospital or take a
short trip out of the house. That you couldn't possibly be so ill that you
can only dream of one day being well enough to use an electric wheelchair
sometimes, if you're really lucky - and so on. As if all humans were
'guaranteed' somehow to always be able to at least do such simple tasks, and
to only ever suffer a 'reasonable' level or time period of disability. But
the body does not acknowledge such limits. If only.
Thus in 20 years not only has no progress been made in the fight for basic
rights, but things have become much worse for M.E. patients and they
continue to grow worse still as the years pass.
M.E. is a shocking disease in every way. M.E. is at least as disabling as
any of the other very serious diseases (such as MS) and the extremely high
level of suffering and isolation it causes can last for many years or
decades at a time. Yet M.E. patients get the least amount of support and
compassion and such high levels of abuse and outright ridicule.
Some of us have some family and/or friends on board, some have welfare, some
have basic medical care (although almost none have the same level of care
the average MS patient has). But most don't have all or even most of these
things and when they do they have often taken many years to get and are very
hard won. By the time many of us have some of these things we have been made
severely ill by going so long without the right care, that it's a somewhat
hollow victory. Especially when we also know that so many others aren't so
lucky and that every year thousands of patients, adults as well as teenagers
and very young children, are still needlessly being made severely ill or
dead though ignorance and misinformation.
It's like an episode of 'The Twilight Zone.' You want to wake up screaming
some mornings, thinking it's a nightmare and that such a hell just couldn't
possibly be real. That so many innocent people couldn't be so ill, abused
and persecuted, with almost none of the public even caring or knowing. That
such a flimsy and unethical global medical scam couldn't be so successful at
fooling almost everyone, despite the fact it's based on nothing more than
smoke and mirrors, scientifically speaking. It's all just far too shocking
to take in sometimes.
I invite readers to be shocked about what is happening, even if M.E. hasn't
yet affected someone you love or know. The facts are utterly profoundly
shocking - I haven't explained even half of them here. If you have the facts
about M.E. you should be not only shocked by what is happening, but also
appalled, disgusted and outraged. I beg you to please use that shock, act on
it and use it to help try and change things, and to see M.E. patients
finally get some basic fair treatment and justice. The only way change will
occur is through education, with enough people simply refusing to accept
what is happening any more. M.E. patients need your help so desperately,
The full paper is available here:
If you would like to link to this page, please do so using the link above
only. If you'd like to download a Word or PDF version of this text, please
click on the above link.
Some time ago I was invited to be a guest blogger on the 'Planet Thrive'
website, and 'The Shocking Disease' paper is what I eventually submitted.
You can read the blogpost here:
Best wishes everyone,
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis: