Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, poorly understood, and underfunded illness affecting millions worldwide, characterized by profound fatigue, cognitive impairment, and physical pain, often triggered by infections, with patients facing significant diagnostic and treatment challenges.
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It's like the plug's been pulled.
The switch has just been turned off.
Imagine being at the amusement park and
suddenly there's just noise.
All the lights go out. The carousel
stops. The music disappears.
You're disoriented and you fall
I felt deathly ill for 8 years. I know
my body has changed and this condition
In the evenings, I often sit in despair
telling my boyfriend that I can't
When it's bad, I can't even get out of
bed. I know my legs should react. There
is no paralysis.
But I can't find the energy to swing my
legs out of the bed.
I'm short of breath. I don't have the
I can't even complete a sentence without [snorts]
[snorts]
course, there's a piece of life missing,
especially when you see what others my
age are doing.
It hasn't affected me as badly yet, but
I still have bad days where I can hardly move.
move.
My whole body hurts, and it makes me
afraid that it will become a permanent condition.
Eileen Brown, Ralph Lipka, [music] and
Sonia Cole, three of over 100 patients
who answered our request for interviews
with the German ME CFS [music] society.
They were all willing to tell us their
personal stories. The strong response
makes it clear just how much suffering
We begin our investigation at the
Sharete Hospital in Berlin. Carmen
Shibenborgan has been researching ME/CFS
My background is in oncology and in 2020
technology has now allowed us to get a
detailed understanding of so many
disease mechanisms that we can use them
for specific treatments. This also
applies to neurology.
But with this disease, we know about it
as much as we did others 30 or 40 years ago.
ago.
The overall number of scientists working
on this disease worldwide is very small
17 to 24 million people suffer from
ME/CFS around the world. In Germany, an
estimated 300,000 and in France, around 250,000.
250,000.
Women are more frequently affected than
men. Scientists assume that at most only
half of those affected have been diagnosed.
Mostly, I'm disappointed.
I'd never imagined that I could be left
so alone with this illness.
There's not only a lack of interest, but
a lack of understanding.
When you speak to politicians, they
think you're just an isolated case.
But you're not. And the worst thing is
that you gradually disappear. In 2018,
Today's the 26th of October and I've
been getting progressively worse since
last night. I couldn't do much today and
spent most of the day lying down. Even
the slightest exertion was too much.
ME/CFS stands for myalgic encphilomiolitis,
encphilomiolitis,
chronic fatigue syndrome. A complicated
The term myalgic refers to muscle and
encphommyalitis is an inflammation of
The term is unfortunate because in most
patients there is no evidence of
There was an attempt to give it a more
But it better describes the core problem.
Those who suffer from this illness have
very low energy reserves and can no
There are completely inexplicable
physical reactions. Your bones hurt so
much that you can't get up in the
morning. Like the flu, you feel weak,
Active, they active.
I used to be active, very active. And
not just as a police officer on the
street making arrests even when things
got rough.
My private life was also very active.
Eileen got monucleiosis two years ago
and she hasn't been the same since. She
can only occasionally go to school. Her
parents are mystified by what's happened
She always used to go out with her friends.
friends.
She just exercised all the time. She
used to work out here at home, too.
But she can't dance anymore. It's really bad.
[music] [singing]
As a parent, you're helpless if you
don't know what's causing it and what
you can do to help.
You try to be encouraging and say, "Come
on, let's go outside. Let's take the dog
out. Come with us. No, I can't. I don't
If I had to describe what the illness
feels like, I'd compare it to a battery.
A healthy person gets up in the morning
with 100% and uses it up over the day.
In the evening, they go to bed and it
recharges overnight so they can start
the next day with a full battery.
It doesn't work like that for us. We
only have a few% to get through the day.
Overnight or during rest periods, our
batteries don't really recharge at all.
We always have to work with only a few%
in our batteries. Our bodies are under
supplied. We just don't have enough energy.
Sonia Cole, a former communications
designer, also caught monucleiosis.
Even though she recovered, she caught a
number of viral infections in 2012 and
hasn't been healthy since. Long
in-person interviews are too strenuous.
So, we do the in-depth interviews later
over the internet.
Could you briefly describe your
symptoms? What are the disease's symptoms?
More and more symptoms emerged over the years.
years.
I kept getting salivary gland infections
and deer infections.
In 2015, I was in the hospital three
times with really serious bowel problems.
problems.
Bronchitis, a burning in the lungs
wouldn't go away. And I went from one
doctor to the next. I saw a neurologist
in 2016 or 2017 and he just took one
look at my medical file, saw how thick
it was and said, "I don't even need to
Most doctors are unaware of the disease
even though it was included in the
International Classification of
Neurological Diseases by the World
Health Organization in 1969.
Even today, those affected are wrongly
diagnosed as suffering from depression
I went to see my doctor, described my
symptoms, and told him how I was
feeling, but he didn't know what it was
either, and eventually said my stomach
was the problem. I've been to various
alternative medical practitioners, but
they couldn't help me either. We've
tried a lot, but no one could tell us
Since no doctors could help, Eileen
searched on the internet herself and
came across a research project at the
Technical University of Munich and the
Helmhold Center.
Utter conducted a broad study at the
center on monucleiosis.
She met young people who did not fully
recover after the infection and went on
to develop ME/CFS.
Very few scientists around the world are
researching ME/CFS in children and adolescence.
adolescence.
The trigger we can characterize best is
indeed infection or infections with
various pathogens. Um
these are mainly viral pathogens for
example the Epstein bar virus or the
accidents and surgery have also been
described as a trigger.
However, these cases are not as well
understood as cases triggered by
infections in healthy people.
Then they appear as excessive immune reactions.
More than 90% of humans catch the
Epsteinb bar virus or EBV during their
lifetime, usually in early childhood.
The virus often develops without
symptoms and most have no additional consequences.
consequences.
But an infection can reappear as monucleiosis,
monucleiosis,
especially in adolescence and young adults.
adults.
Common symptoms are a high temperature,
fatigue, sore throat, and swollen lymph nodes.
Most fully recover.
Some, however, suffer life-threatening
complications, [music]
including respiratory disease, spleen
damage, low blood cell counts, or
An estimated 40,000 children and
adolescents in Germany suffer from
ME/CFS. A diagnosis is complicated. The
disease has no biological
characteristics that can be used to
objectively diagnose an infection. Other
conditions have to first be eliminated
as the cause of Eileen's permanent
exhaustion and pain. The internationally
established Canadian consensus criteria
for MECFs helps doctors reach a diagnosis.
diagnosis.
Neurological and cognitive symptoms,
immune disorders, muscle and joint pain,
[music]
The best symptom for distinguishing
ME/CFS from other CFS conditions is
The symptoms worsen after patients exert
themselves physically or mentally
leading to a crash.
Hello. Hello. Fine.
9 months after getting monucleiosis,
Eileen was finally diagnosed with ME/CFS
But what then? No medicines or therapies
have been developed to battle the disease.
disease.
Standard treatments tackle the symptoms instead.
Besides the entire symptom oriented
treatment, including cardiovascular
support, it's important to give patients
good advice to recommend relaxation
techniques and how to manage their very
low energy reserves.
They shouldn't overexert themselves, but
also get limited exercise, short daily
walks if possible, so that they don't
Eileen is now taking part [music] in one
of Utan's studies. The professor and her
team are looking at the course of the
disease in ME/CFS patients.
Eileen's pulse and blood pressure are
taken regularly and her blood is tested.
Cardiovascular changes are measured
Okay. Straight legs and lean your head back.
Are you nauseous?
I feel dizzy.
Would you rather lie down? Yeah.
The worst thing about this illness is
that patients don't actually look ill,
which is also a problem for research
because the stigmatization gets in the
way of both treatment and scientific attention.
But at the moment, we are thankful for
support from the US National Institute
of Health, the NIH.
Thank God now a little more research is
being advanced by the wave from that.
But it's too little with too little
In Germany, most of the patients are
left to battle the disease on their own.
They're dependent on private care from
relatives and friends.
Health insurance companies don't yet
recognize ME/CFS.
and refuse to take over most of the costs.
costs.
Patients are reduced to trial and error
I tried everything, really everything.
I was so desperate.
I then happened to try an off label
drug, a medication that's meant for
different illness, and I experienced
what I now know as a crash.
So, I researched the medication and kept
coming across an illness I'd never heard of,
of,
myalgic and sephilomiolitis,
She read it and said, "Look, these
people feel like I do." And she sent it
And I kept wanting to leave as I read it.
it.
Take a break if you want.
On the one hand, I was relieved when I
read it and totally recognized myself.
But on the other, I realized that I'd
been fighting it for six years and would
be fighting it for a long time before I
could get better again. And it's not
even clear whether I ever will get
a process that began nine years ago with pneumonia.
pneumonia.
And in the weeks and years that have
followed, I haven't been able to get
I felt like a 90-year-old with a walker
[music]
Ralph Lipka went from doctor to doctor
for 2 and 1/2 years.
No one was able to find anything. Then
his cardiologist pointed him to Carmen
Shyenborgan's outpatient clinic at the
Sharite Hospital. She diagnosed him with
ME/CFS in 2016. Hello.
Hello.
Hello, Helipka. Good morning. Come with
So,
we haven't seen each other for a while.
How are you?
Getting worse all the time, but slowly. Okay.
Okay.
Okay. Still working?
No, I'm on sick leave.
Okay. And before that?
Before that, I gradually moved from
being in the field to desk work and then
working from home.
And eventually, even that didn't work anymore.
anymore.
Even with breaks, eight hour days are
too much. And you've brought me these results.
results.
They are really very high. When I saw
you first, they were elevated. But the
values you have now are extremely high.
We think these antibodies also regulate
the body and due to CFS, their function
is disrupted.
And this may mean that exertion can lead
your muscles not being properly supplied
with blood. You're quickly in pain,
can't concentrate,
and ultimately energy production is also
controlled by this system.
It could be a major factor for
explaining all the complaints of this illness.
We still only have an incomplete picture
of how this disease functions. What is
relatively clear is that it's an illness
where the immune system plays a
significant role,
if only because the disease usually
begins after an infection.
The infection ramps up the immune system
and it doesn't return to its original state.
state.
We assume that this overactive or
misdirected immune response then takes
over the function of the autonomic
nervous system.
The autonomic nervous system controls
all the body's involuntary functions.
Our heartbeat, breathing, digestion, and
centrally the dilation of blood vessels.
If during exertion, blood cannot flow
freely through the vessels, muscle pain
and poor concentration are the result.
Not enough oxygen is available to
produce energy.
The beta 2 receptor is vital for blood
flow regulation and is located on the
blood vessels in muscles. It's
controlled by adrenaline which is
released during physical exertion as
well as antibodies. In healthy people,
blood vessels dilate to increase oxygen
supply to muscles. But the charite team
found indications that antibodies don't
function correctly in ME/CFS patients.
muscles don't get enough oxygen.
We know the patient has antibodies
against the beta 2 receptor. What we
want to know is which part of the beta 2
receptor. We've divided up the beta 2
receptor into 15 small pieces and stuck
each piece onto a different little bead.
These beads all glow in a slightly
different color. And then we can see
this patient reacts more to the front
part another to the middle part. We
compare this with the reaction pattern
of healthy people. This would help us
understand the disrupted receptor
mechanism better. And ideally we would
see such a clear difference that we
The blood taken from Eileen is to be
used for further research. The Munich
researchers send it with other samples
to the Ulus Maximleians University in
Vertzborg. Microbiologist and
veriologist Dr. Bupes Prusti and his
team are awaiting the samples. I
personally am very fascinated to search
for um the infectious causes behind the
disease. If at all there is a viral
infection being associated in this
disease and if we can find out this
virus association can be proof at the
molecular level how the virus causes the
disease. This will be really a u big big
breakthrough in this field and uh if we
can prove that really viruses are
responsible for the disease then in a
long run definitely we can find a cure
to it or a way to interfere in the
process of disease development.
The scientist has been studying the role
of viruses in the human body for many
years. He was the first to discover the
link between the Epstein bar virus and ME/CFS.
ME/CFS.
What we have found out that herpes
viruses particularly human herpes virus
type six and Epstein bar virus they are
the most interesting candidates which
can contribute to the development of the
disease. we have found
as uh that HHV6
um produces a small RNA and this small
RNA can directly target uh mitochondria
to fragment and this is already known
that in EVV infection also mitochondria
is fragmented. So we believe that this
virus induced mitochondrial
fragmentation is one of the most
important steps in the development of ME/CFS.
Our physical and mental performance is
determined by tiny little power
generators, [music] the mitochondria.
Healthy mitochondria have a long
mesh-like structure which is important
for producing ATP, our body's universal
energy source.
When mitochondria fragment and lose
their [music] mesh-like structure, they
can no longer function properly and
In his experiments, he adds antibodies
from the blood of ME/CFS patients to
healthy cell cultures he has grown.
What will then happen to the healthy mitochondria?
If there is a factor in the serum of
ME/CFS patients which causes
mitochondria dysfunction, we expect that
this factor will affect the healthy
cells and the mitochondria will be
fragmented up to different degree.
The first results appear after between
24 and 48 hours. He's right. The
mitochondria from the healthy cell
culture have fragmented and broken down
into tiny pieces.
This is severely affected mitochondria.
You can see that they are small pieces.
Now, yeah, they are not interconnected
to each other. If you look into a
healthy cell, you can see that the
mitochondria are always like
interconnected with each other. Yeah.
And this mitochondria is first of all um
weak in in immune response. They cannot
fight against any infections.
and uh they produce less energy their
metabolism is completely slow.
This is how what happens in
some of these severe ME/CFS patients.
Upesh Prost research is groundbreaking
and a possible explanation of why ME/CFS
patients have low energy levels.
But this process could also be used in
diagnosis which would be an enormous advance.
advance.
We are at the very beginning stage of
testing. We are still not using as a
diagnostic but we are trying to develop
this technique. So at this stage it's
very preliminary. We we can get nice
results with severe ME/CFS patients.
Almost 100% always works but with mild
and moderate ME/CFS patients it still
goes sometimes wrong. So you still have
to work on it. Yeah.
But he needs funding for his work and
there are not any public funds available
for ME/CFS research in Germany.
ME/CFS research is insufficiently funded
around the world. In the United States,
for example, it ranks very low. US
health authorities spend about $14
million on the 2.5 million ME/CFS
sufferers. [music]
However, for 1 million multiple
sclerosis patients, the same authorities
spent $100 million and for the 1.2
The international hashmeaction
movement is fighting for more research
funding, recognition of the illness, and
adequate treatment. They want to draw
attention to the precarious situation of
those afflicted.
In her documentary Unrest, Jennifer
Brier shows hundreds of empty pairs of
men's and women's shoes. They're
symbolic for the millions of people who
As soon as I saw the film, I thought, I
have to do something like that. I have
to do something. We have to attack this
at the root.
With a handful or perhaps 10 people, we
launched millions missing Germany and
then planned and carried out our first events.
Treatment in Germany for ME/CFS patients
is catastrophic.
They have no access to treatment, have
to fight legal battles for every small
step, like getting a wheelchair, and are
sometimes even subjected to considerable
It was a very exciting time. It really
felt like you could make a difference,
could change something, and didn't have
In Norway, there are at least 15,000
people with ME/CFS.
A Norwegian research team led by Eston
Fluga and Olaf Mela from Bergen
University has long been searching for a
drug that could help them. They came
across Retoximab a few years ago by
chance. They had wanted to use it to
treat a cancer patient who was also
suffering from ME/CFS.
After observing at least eight patients
telling us independently of each other
about this uh effect on the ME/CFS disease.
disease.
uh then we decided to uh try to do some
research and our hypothesis
from the start has been that MECFs could
perhaps be a variant of an autoimmune disease
disease
uh with a role for auto antibodies and
be lymphosytes
and that's why we decided to pursue the
the observations
B cells are important immune cells in
our body that produce antibodies that
destroy viruses and bacteria.
Unfortunately, this process sometimes
goes ary and the B cells produce
antibodies that don't work properly or
actually [music] attack the body itself.
This occurs in many autoimmune diseases
Scientists believe that ME/CFS is one
such autoimmune disease. Retoximab is a
medication which temporarily destroys B
cells, preventing them from producing
antibodies to attack a person's own body.
body.
In three smaller scale trials, they
succeed in treating ME/CFS patients with Retoximab.
Retoximab.
The scientists then initiate a double
blind randomized phase 3 trial with 152 patients.
patients.
Patients and their families around the
world are hoping it will be the
I think the worst thing is the loss of control
control
and the more you struggle and fight it,
the more your health deteriorates. It's
The antibodies in the blood of ME/CFS
patients seem to play a significant
role. Utterance and her team also want
to discover whether they can diagnose
the disease based on these antibodies
and whether a marker can be found in the
We asked whether the CFS patient had
been infected with the Epstein bar virus
at some point.
If so, they should have a few green dots
and they do. This is a green dot that we
also see in some standard diagnostic tests.
tests.
And whether the unique signature which
we see here is related to CFS, we can
only say once we've examined a lot of patients.
During our research, reports of the new
SARS Kovv2 virus began to appear exponentially.
exponentially.
Worldwide, over 100 million people have
been infected with the new virus. Weeks
and months after an initial infection,
many are still suffering with very
Felix Monfeld, a neurossychologist and
musician, contracted Corona in March 2020.
2020.
He still hasn't recovered. Suffers from
permanent pain, cognitive lapses, sleep
The weekend when it began going
downhill, I just thought I had severe fatigue.
fatigue.
I know the term and I know that it's postviral.
postviral.
I just Googled postviral fatigue without
knowing that it's used as a synonym for
me CFS.
I saw that it was precisely these
seemingly unrelated symptoms that I had.
I couldn't have imagined an illness
It's as though you just don't exist anymore.
After the first wave of the corona
virus, it gradually starts to become
clear what an infection with the virus
really means.
We think that around 1 or 2% of those
who have had a mild case of CO 19 could
develop CFS. certificate.
certificate.
When we see how dynamic the spread of
this virus actually is, there is great
concern that we will have a
significantly increasing number of
chronically ill ME/CFS patients in
International researchers including
Bupesh Prey are rushing to investigate
the long-term effects of COVID 19. He
doesn't think the SARS Kovv2 is directly
responsible for the long-term effects.
He believes that latent herpes viruses
in the human body are reactivated after
a corona infection and weeks later lead
sees a comparable pattern with ME/CFS
which also develops after a viral infection.
infection.
If the signature of the serum that we
are looking in MCFS patients are the
same in these patients
at this moment we are talking that
symptoms of ME/CFS patients are similar
to these patients who have this long
COVID but we don't know it it's just
simply an association there is no proven
uh data to say that okay a long COVID
I left school and decided to do remote
learning to finish schooling. I can do
it from home. My school just wasn't
giving me enough support. I would have
had to continue to go to school
normally, which just isn't possible.
But since I've been doing everything
from home, I definitely feel much better.
Most families leave here with a new
We wish we could meet patients much
earlier. We wish the illness's clinical
picture was more widely known and that
any patients who haven't recovered 3
months after an infection and show these
symptoms would be referred to a
We would then see fewer patients in such
Millions of patients around the world
are hoping for salvation from Norway.
The results of the 2-year Retoximab
trial are eagerly awaited. But then
disappointment. The trial is negative.
Retoximab doesn't have the expected effect.
It was a bit unexpected.
We could have had a negative trial. that
is also that that that can happen even
if you have um an active drug. But uh
not seeing a tendency in the right
direction was a bigger surprise for us
uh especially as I said based on our
previous experience. On the other hand,
we did changes in the rtoximab
doublebinded study. for example, lower
doses in maintenance treatment which may
have had an influence on this.
Scientists had to have the dose because
they received no funding from the
pharmaceutical industry. But the
research continues the hunt for other
They can use their research bio [music]
bank with 3,000 blood samples all
donated by participants in the rtoximab trial.
If you ask me [music] what we're looking
for in the future, one thing we're
looking for is a biomarker because a lot
of patients do not have the ME CSF
[music] diagnosis because the
practitioner, general practitioner or
the specialist has problems and putting
the diagnosis on the patient.
But for research into both the causes of
the disease and [music] possible drugs,
scientists everywhere need money.
at least €40 million in Germany alone.
The federal government recently set
aside €3.7 million for research into
patient care. A drop in the ocean.
In my personal opinion, the only way um
we can find a solution to this disease
is to bring patients, the clinicians and
the basic science researchers to one
umbrella. and our political system can
play a very important role in bringing
together these three pillars. If this
happens, I guess in next five to six
years, we can have uh solution to this problem.
I've also had phases with suicidal
thoughts. Of course, I have.
Would you want to live like this with no
prospect of getting any better?
Even if massive research was launched
now, it wouldn't help me.
But until then, I'll try anything. I'm
not going to let this drag me down. If
the disease wants a fight, I'll give it one.
There are so few people out there who
are able to fight for us
or who want to fight for us.
That puts a lot of pressure on our shoulders.
You put yourself under pressure
because you really want to get out of
here again.
We all know exactly what we want to do tomorrow.
tomorrow.
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