August 8th Severe M.E. Day
We have lost far too many people to this disease Myalgic Encephalomyelitis (M.E.) and so many patients are most severely ill, house bound, and bed bound
lying in dark rooms alone unable to speak or eat, unable to tolerate sound and
light and touch.
Have you heard of Severe Myalgic Encephalomyelitis Day? This
day honours and remembers the 25% of those with M.E. who are most severely ill.
Sophia Mirza suffered from severe M.E. for at least six years. The doctors and psychiatrist threatened Sophia with sectioning in a mental hospital if she refused to go into a particular M.E. clinic. They carried out their threat in July 2003. The effects on Sophia's health were devastating. She died on 25th November 2005 when she was
only 32 years old. An independent Neuropathologist found Sophia's spine contained massive infection. At the inquest the Coroner confirmed that "She died as
a result of acute renal failure arising from the effects of chronic fatigue
syndrome M.E."
Sophia's birthday, August 8th, was chosen as Severe Myalgic
Encephalomyelitis Day by the 25% M.E. Group in 2013. On this day we honour
Sophia and many others with M.E. who live alone in darkened and quiet
isolation.
Deaths from cancer, heart problems and suicide are among the
top three causes of death of people with M.E.
Patients choosing to end their lives do not want to die, but
they cannot live with the unrelenting symptoms coupled with the fact that there
is no significant change on the horizon. Combine this with neglect and abuse
they often receive by those who disbelieve their illness, think it’s all in
their head and that they are either shirkers or have a psychiatric problem that
needs to be dealt with.
These ‘beliefs’ can have a profound impact when trying to
access financial and other disability supports for people with M.E.
Of the many people we have lost to M.E. some we knew well,
and others were mere acquaintances on social media. But the thing we all have
in common is the drive to fight for health equality for M.E. patients, the
fight for raising awareness, the fight for more research and policy making, the
fight for lives lost to M.E.
The most poignant loss this year in the M.E. community was
that of Anne Ortegren, a Swedish activist and M.E. patient, who chose to end
her life. She had been suffering greatly from this illness and chose to end
that suffering.
Anne was well-known in the patient community, and often
wrote for Health Rising. Before her assisted suicide, she wrote a farewell letter,
explaining how her illness had dramatically changed her life and why she made
this decision. We were shaken and sorry to learn of Anne’s passing, shaken by
the strength of character coming through in her message, left as a reminder to
all of us, as well as medics, scientists, physicians, funding and government agencies, that
M.E. can no longer be neglected!
Anne will be remembered for her courage, and her memory will
remain as a reminder of what we are fighting for.
Rest in peace, Anne.
Anne Ortegren’s letter to the ME community: -
Farewell – A Last
Post from Anne Örtegren
Nobody can say that I
didn’t put up enough of a fight.
For 16 years I have
battled increasingly severe ME/CFS. My condition has steadily deteriorated and
new additional medical problems have regularly appeared, making it ever more
difficult to endure and make it through the day (and night).
Throughout this time,
I have invested almost every bit of my tiny energy in the fight for treatment
for us ME/CFS patients. Severely ill, I have advocated from my bedroom for
research and establishment of biomedical ME/CFS clinics to get us proper health
care. All the while, I have worked hard to find something which would improve
my own health. I have researched all possible treatment options, got in contact
with international experts and methodically tried out every medication,
supplement and regimen suggested.
Sadly, for all the
work done, we still don’t have adequately sized specialized biomedical care for
ME/CFS patients here in Stockholm, Sweden – or hardly anywhere on the planet.
We still don’t have in-patient hospital units adapted to the needs of the
severely ill ME/CFS patients. Funding levels for biomedical ME/CFS research
remain ridiculously low in all countries and the erroneous psychosocial model
which has caused me and others so much harm is still making headway.
And sadly, for me
personally things have gone from bad to worse to unbearable. I am now mostly
bedbound and constantly tortured by ME/CFS symptoms. I also suffer greatly from
a number of additional medical problems, the most severe being a systematic
hyper-reactivity in the form of burning skin combined with an
immunological/allergic reaction. This is triggered by so many things that it
has become impossible to create an adapted environment. Some of you have
followed my struggle to find clothes and bed linen I can tolerate. Lately, I am
simply running out. I no longer have clothes I can wear without my skin
“burning up” and my body going into an allergic state.
This means I no
longer see a way out from this solitary ME/CFS prison and its constant torture.
I can no longer even do damage control, and my body is at the end of its rope.
Therefore, I have gone through a long and thorough process involving several
medical assessments to be able to choose a peaceful way out: I have received a
preliminary green light for accompanied suicide through a clinic in
Switzerland.
When you read this I
am at rest, free from suffering at last. I have written this post to explain
why I had to take this drastic step. Many ME/CFS patients have found it
necessary to make the same decision, and I want to speak up for us, as I think
my reasons may be similar to those of many others with the same sad destiny.
These reasons can be
summed up in three headers: unbearable suffering; no realistic way out of the
suffering; and the lack of a safety net, meaning potential colossal increase in
suffering when the next setback or medical incident occurs.
Important note
Before I write more
about these reasons, I want to stress something important. As for most other
ME/CFS patients who have chosen suicide, depression is not the cause of my
choice. Though I have been suffering massively for many years, I am not
depressed. I still have all my will and my motivation. I still laugh and see
the funny side of things, I still enjoy doing whatever small activities I can
manage. I am still hugely interested in the world around me – my loved ones and
all that goes on in their lives, the society, the world (what is happening in
human rights issues? how can we solve the climate change crisis?) During these
16 years, I have never felt any lack of motivation. On the contrary, I have
consistently fought for solutions with the goal to get myself better and help
all ME/CFS patients get better. There are so many things I want to do, I have a
lot to live for. If I could only regain some functioning, quieten down the
torture a bit and be able to tolerate clothes and a normal environment, I have
such a long list of things I would love to do with my life!
Three main reasons
So depression is not
the reason for my decision to terminate my life. The reasons are the following:
1. Unbearable
suffering
Many of us severely
ill ME/CFS patients are hovering at the border of unbearable suffering. We are
constantly plagued by intense symptoms, we endure high-impact every-minute
physical suffering 24 hours a day, year after year. I see it as a prison
sentence with torture. I am homebound and mostly bedbound – there is the
prison. I constantly suffer from excruciating symptoms: The worst flu you ever
had. Sore throat, bronchi hurting with every breath. Complete exhaustion,
almost zero energy, a body that weighs a tonne and sometimes won’t even move.
Muscle weakness, dizziness, great difficulties standing up. Sensory overload
causing severe suffering from the brain and nervous system. Massive pain in
muscles, painful inflammations in muscle attachments. Intensely burning skin. A
feeling of having been run over by a bus, twice, with every cell screaming.
This has got to be called torture.
It would be easier to
handle if there were breaks, breathing spaces. But with severe ME/CFS there is
no minute during the day when one is comfortable. My body is a war zone with
constant firing attacks. There is no rest, no respite. Every move of every day
is a mountain-climb. Every night is a challenge, since there is no easy sleep
to rescue me from the torture. I always just have to try to get through the
night. And then get through the next day.
It would also be
easier if there were distractions. Like many patients with severe ME/CFS I am
unable to listen to music, radio, podcasts or audio books, or to watch TV. I
can only read for short bouts of time, and use the computer for even shorter
moments. I am too ill to manage more than rare visits or phone calls from my
family and friends, and sadly unable to live with someone. This solitary
confinement aspect of ME/CFS is devastating and it is understandable that
ME/CFS has been described as the “living death disease”.
For me personally,
the situation has turned into an emergency not least due to my horrific symptom
of burning skin linked to immunological/allergic reactions. This appeared six
years into my ME/CFS, when I was struck by what seemed like a complete collapse
of the bodily systems controlling immune system, allergic pathways, temperature
control, skin and peripheral nerves. I had long had trouble with urticaria,
hyperreactive skin and allergies, but at this point a violent reaction occurred
and my skin completely lost tolerance. I started having massively burning skin,
severe urticaria and constant cold sweats and shivers (these reactions reminded
me of the first stages of the anaphylactic shock I once had, then due to heat
allergy).
Since then, for ten
long years, my skin has been burning. It is an intense pain. I have been unable
to tolerate almost all kinds of clothes and bed linen as well as heat, sun,
chemicals and other everyday things. These all trigger the burning skin and the
freezing/shivering reaction into a state of extreme pain and suffering. Imagine
being badly sunburnt and then being forced to live under a constant scalding
sun – no relief in sight.
At first I managed to
find a certain textile fabric which I could tolerate, but then this went out of
production, and in spite of years of negotiations with the textile industry it
has, strangely, proven impossible to recreate that specific weave. This has
meant that as my clothes have been wearing out, I have been approaching the
point where I will no longer have clothes and bed linen that are tolerable to
my skin. It has also become increasingly difficult to adapt the rest of my
living environment so as to not trigger the reaction and worsen the symptoms.
Now that I am running out of clothes and sheets, ahead of me has lain a
situation with constant burning skin and an allergic state of shivering/cold
sweats and massive suffering. This would have been absolutely unbearable.
For 16 years I have
had to manage an ever-increasing load of suffering and problems. They now add
up to a situation which is simply no longer sustainable.
2. No realistic way
out of the suffering
A very important
factor is the lack of realistic hope for relief in the future. It is possible
for a person to bear a lot of suffering, as long as it is time-limited. But the
combination of massive suffering and a lack of rational hope for remission or
recovery is devastating.
Think about the
temporary agony of a violent case of gastric flu. Picture how you are feeling
those horrible days when you are lying on the bathroom floor between attacks of
diarrhoea and vomiting. This is something we all have to live through at times,
but we know it will be over in a few days. If someone told you at that point:
“you will have to live with this for the rest of your life”, I am sure you would
agree that it wouldn’t feel feasible. It is unimaginable to cope with a whole
life with the body in that insufferable state every day, year after year. The
level of unbearableness in severe ME/CFS is the same.
If we knew there were
relief on the horizon, it would be possible to endure severe ME/CFS and all the
additional medical problems, even for a long time, I think. The point is that
there has to be a limit, the suffering must not feel endless.
One vital aspect here
is of course that patients need to feel that the ME/CFS field is being taken
forward. Sadly, we haven’t been granted this feeling – see my previous blogs
relating to this here and here.
Another imperative
issue is the drug intolerance that I and many others with ME/CFS suffer from. I
have tried every possible treatment, but most of them have just given me
side-effects, many of which have been irreversible. My stomach has become
increasingly dysfunctional, so for the past few years any new drugs have caused
immediate diarrhoea. One supplement triggered massive inflammation in my entire
urinary tract, which has since persisted. The list of such occurrences of major
deterioration caused by different drugs/treatments is long, and with time my
reactions have become increasingly violent. I now have to conclude that my
sensitivity to medication is so severe that realistically it is very hard for
me to tolerate drugs or supplements.
This has two crucial
meanings for many of us severely ill ME/CFS patients: There is no way of
relieving our symptoms. And even if treatments appear in the future, with our
sensitivity of medication any drug will carry a great risk of irreversible
side-effects producing even more suffering. This means that even in the case of
a real effort finally being made to bring biomedical research into ME/CFS up to
levels on par with that of other diseases, and possible treatments being made
accessible, for some of us it is unlikely that we would be able to benefit.
Considering our extreme sensitivity to medication, one could say it’s hard to
have realistic hope of recovery or relief for us.
In the past couple of
years I, being desperate, have challenged the massive side-effect risk and
tried one of the treatments being researched in regards to ME/CFS. But I
received it late in the disease process, and it was a gamble. I needed it to
have an almost miraculous effect: a quick positive response which eliminated
many symptoms – most of all I needed it to stop my skin from burning and
reacting, so I could tolerate the clothes and bed linen produced today. I have
been quickly running out of clothes and sheets, so I was gambling with high
odds for a quick and extensive response. Sadly, I wasn’t a responder. I have
also tried medication for Mast Cell Activation Disorder and a low-histamine
diet, but my burning skin hasn’t abated. Since I am now running out of clothes
and sheets, all that was before me was constant burning hell.
3. The lack of a
safety net, meaning potential colossal increase in suffering when the next
setback or medical incident occurs
The third factor is
the insight that the risk for further deterioration and increased suffering is
high.
Many of us severely ill
ME/CFS patients are already in a situation which is unbearable. On top of this,
it is very likely that in the future things will get even worse. If we look at
some of our symptoms in isolation, examples in my case could be my back and
neck pain, we would need to strengthen muscles to prevent them from getting
worse. But for all ME/CFS patients, the characteristic symptom of
Post-Exertional Malaise (PEM) with flare-ups of our disease when we attempt
even small activities, is hugely problematic. Whenever we try to ignore the PEM
issue and push through, we immediately crash and become much sicker. We might
go from being able to at least get up and eat, to being completely bedbound,
until the PEM has subsided. Sometimes, it doesn’t subside, and we find ourselves
irreversibly deteriorated, at a new, even lower baseline level, with no way of
improving.
PEM is not something
that you can work around.
For me, new medical
complications also continue to arise, and I have no way of amending them. I
already need surgery for one existing problem, and it is likely that it will be
needed for other issues in the future, but surgery or hospital care is not
feasible for several reasons:
One is that my body
seems to lack repairing mechanisms. Previous biopsies have not healed properly,
so my doctor is doubtful about my ability to recover after surgery.
Another, more general
and hugely critical, is that with severe ME/CFS it is impossible to tolerate
normal hospital care. For ME/CFS patients the sensory overload problem and the
extremely low energy levels mean that a normal hospital environment causes
major deterioration. The sensory input that comes with shared rooms, people
coming and going, bright lights, noise, etc, escalates our disease. We are
already in such fragile states that a push in the wrong direction is
catastrophic. For me, with my burning skin issue, there is also the issue of
not tolerating the mattresses, pillows, textile fabrics, etc used in a
hospital.
Just imagine the
effects of a hospital stay for me: It would trigger my already severe ME/CFS
into new depths – likely I would become completely bedbound and unable to
tolerate any light or noise. The skin hyperreactivity would, within a few
hours, trigger my body into an insufferable state of burning skin and agonizing
immune-allergic reactions, which would then be impossible to reverse. My
family, my doctor and I agree: I must never be admitted to a hospital, since
there is no end to how much worse that would make me.
Many ME/CFS patients
have experienced irreversible deterioration due to hospitalization. We also
know that the understanding of ME/CFS is extremely low or non-existent in most
hospitals, and we hear about ME/CFS patients being forced into environments or
activities which make them much worse. I am aware of only two places in the
world with specially adjusted hospital units for severe ME/CFS, Oslo, Norway,
and Gold Coast, Australia. We would need such units in every city around the
globe.
It is extreme to be
this severely ill, have so many medical complications arise continually and
know this: There is no feasible access to hospital care for me. There are no
tolerable medications to use when things get worse or other medical problems
set in. As a severely ill ME/CFS patient I have no safety net at all. There is
simply no end to how bad things can get with severe ME/CFS.
Coping skills –
important but not enough
I realize that when
people hear about my decision to terminate my life, they will wonder about my
coping skills. I have written about this before and I want to mention the issue
here too:
While it was
extremely hard at the beginning to accept chronic illness, I have over the
years developed a large degree of acceptance and pretty good coping skills. I
have learnt to accept tight limits and appreciate small qualities of life. I
have learnt to cope with massive amounts of pain and suffering and still find
bright spots. With the level of acceptance I have come to now, I would have
been content even with relatively small improvements and a very limited life.
If, hypothetically, the physical suffering could be taken out of the equation,
I would have been able to live contentedly even though my life continued to be
restricted to my small apartment and include very little activity. Unlike most people
I could find such a tiny life bearable and even happy. But I am not able to
cope with these high levels of constant physical suffering.
In short, to sum up
my level of acceptance as well as my limit: I can take the prison and the
extreme limitations – but I can no longer take the torture. And I cannot live
with clothes that constantly trigger my burning skin.
Not alone – and not a
rash decision
In spite of being
unable to see friends or family for more than rare and brief visits, and in
spite of having limited capacity for phone conversations, I still have a circle
of loved ones. My friends and family all understand my current situation and
they accept and support my choice. While they do not want me to leave, they
also do not want me to suffer anymore.
This is not a rash
decision. It has been processed for many years, in my head, in conversations
with family and friends, in discussion with one of my doctors, and a few years
ago in the long procedure of requesting accompanied suicide. The clinic in
Switzerland requires an extensive process to ensure that the patient is
chronically ill, lives with unendurable pain or suffering, and has no realistic
hope of relief. They require a number of medical records as well as
consultations with specialized doctors.
For me, and I believe
for many other ME/CFS patients, this end is obviously not what we wanted, but
it was the best solution to an extremely difficult situation and preferable to
even more suffering. It was not hasty choice, but one that matured over a long
period of time.
A plea to decision
makers – Give ME/CFS patients a future!
As you understand,
this blog post has taken me many months to put together. It is a long text to
read too, I know. But I felt it was important to write it and have it published
to explain why I personally had to take this step, and hopefully illuminate why
so many ME/CFS patients consider or commit suicide.
And most importantly:
to elucidate that this circumstance can be changed! But that will take devoted,
resolute, real action from all of those responsible for the state of ME/CFS
care, ME/CFS research and dissemination of information about the disease.
Sadly, this responsibility has been mishandled for decades. To allow ME/CFS
patients some hope on the horizon, key people in all countries must step up and
act.
If you are a decision
maker, here is what you urgently need to do: You need to bring funding for
biomedical ME/CFS research up so it’s on par with comparable diseases (as an
example, in the US that would mean $188 million per year). You need to make
sure there are dedicated hospital care units for ME/CFS inpatients in every
city around the world. You need to establish specialist biomedical care
available to all ME/CFS patients; it should be as natural as RA patients having
access to a rheumatologist or cancer patients to an oncologist. You need to
give ME/CFS patients a future.
Please listen to
these words of Jen Brea, which sum up the situation in the US, but are
applicable to almost every country:
“The NIH says it
won't fund ME research because no one wants to study it. Yet they reject the
applications of the world class scientists who are committed to advancing the
field. Meanwhile, HHS has an advisory committee whose sole purpose seems to be
making recommendations that are rarely adopted. There are no drugs in the
pipeline at the FDA yet the FDA won't approve the one drug, Ampligen, that can
have Lazarus-like effects in some patients. Meanwhile, the CDC continues to
educate doctors using information that we (patients) all know is inaccurate or
incomplete.”
Like Jen Brea, I want
a number of people from these agencies, and equivalent agencies in Sweden and all
other countries, to stand up and take responsibility. To say: “ME! I am going
to change things because that is my job.”
And lastly
Lastly, I would like
to end this by linking to this public comment from a US agency meeting (CFSAC).
It seems to have been taken off the HHS site, but I found it in the Google Read
version of the book “Lighting Up a Hidden World: CFS and ME” by Valerie Free.
It includes testimony from two very eloquent ME patients and it says it all. I
thank these ME patients for expressing so well what we are experiencing.
https://books.google.se/books?id=6QMrDQAAQBAJ&pg=PA321&lpg=
PA321&dq=CFSAC+moore+billie&source=bl&ots=gIh7zwwXzE&sig=_
wbeBOe2EMhk3lxhyeUMG2EZf_4&hl=sv&sa=X&ved=0ahUKEwjlqafq
76XQAhUC_iwKHYkUCxUQ6AEIKzAC#v=onepage&q=CFSAC%20m
oore%20billie&f=false
PS.
My previous blog
posts:
From International
Traveler to 43 Square Meters: An ME/CFS
Story From Sweden
Coping With ME/CFS
Will Always Be Hard – But There are
Ways of Making It A
Little Easier
The Underfinanced
ME/CFS Research Field Pt I: The Facts
– Plus “What Can We
Do?
The Underfinanced
ME/CFS Research Field Pt II: Why it
Takes 20 Years to Get
1 Year’s Research Done
My Swedish ME/CFS
newsletters, distributed via e-mail to 2700 physicians, researchers, CMOs,
politicians and medical journalists:
https://mecfsnyheter.se/
Take care of each
other.
Love, Anne
