The questions: What is Chronic Fatigue Syndrome (CFS), What is Myalgic Encephalomyelitis (ME),
What is ME/CFS, What is CFIDS, What is post viral fatigue syndrome and What is SEID, are
in essence all the same question.
This shows you how misunderstood the illness is, so in this video, I am going to explain
to you WHAT ME/CFS REALLY is.
In the process, we are also going to bust some of the terrible myths that increase the
emotional and physical suffering of people experiencing ME/CFS and what you can do to
help reduce that.
It’s a shame that people can’t even agree
on a single name for the illness.
Whilst some people argue these are different illnesses or subgroups, it’s actually more
of a difference of naming convention with people in Europe and the UK more often using
the term Myalgic Encephalomyelitis or ME and people elsewhere using Chronic Fatigue Syndrome
or CFS.
Post Viral Fatigue Syndrome was born from the experience where people start to develop
CFS after they experience a virus.
So whilst it is possible to subcategorise the illness based on predominant symptoms
and how the illness starts and specifically define it as ME or CFS, I am predominantly
going to refer to it as one illness ME/CFS as does the Center for Disease Control and
many specialists that treat the illness in the US and around the world.
The confusion has really come about due to a lack of understanding of what causes the
illness when it was first labelled as Chronic Fatigue Syndrome.
The name suggests that it simply means somebody is chronically fatigued.
But in fact, ME/CFS is a multi-system illness that produces an extensive lists of symptoms
and dysfunctions that affect most bodily systems.
This can be especially frustrating and difficult for medical doctors because many of the symptoms
are associated with other diseases also.
The Centre for Disease Control lists the PRIMARY symptoms as:
1.)
Profound fatigue 2.)
Post-exertional malaise, where symptoms get worse after activity
3.)
Unrefreshing sleep 4.)
Cognitive impairments, so problems with thinking and memory and attention, sometimes referred
to as brain fog 5.)
Orthostatic intolerance – which is becoming lightheaded, dizzy, weak or faint while standing
or sitting up.
However, in my experience, people often develop unrefreshing sleep, cognitive impairment and
orthostatic intolerance over time.
And one symptom not listed as “CORE” that most people tend to experience, is immune
dysfunction and other neurological symptoms – so things like swollen glands, flu-like
symptoms, low immunity and neurological symptoms like sensitivities to lights, smells and other
sensations.
The best way to understand what ME/CFS is, is to realise that it is a multi-systemic
illness.
That means that it affects multiple systems in the body including your nervous system,
your endocrine system, your digestive system and numerous other bodily systems.
Because ME/CFS is a heterogeneous illness, meaning that it manifests differently in different
people, sometimes the illness is seen as a wastebasket diagnosis or not a real illness.
And with so many of the symptoms difficult to measure and based on patient reporting,
the myth that the illness isn’t real or that patients are hypochondriacs, crazy or
depressed, has been created and is still prevalent in some circles.
Not only have I had this illness myself, but I have interacted with thousands of people
experiencing this illness and I can categorically assure you that this is simply not true and
not fair.
The illness is real, as are the symptoms.
Anyone can experience this illness and people can have different symptoms, different progression
in their experience of the illness and different severities.
Patients often think that their experience is unique until they learn of others that
have the same symptoms as them.
And ME/CFS isn’t as rare as you might think – you can check out the website on the different
estimated rates but given the very low diagnosis rates, the real figures of people that have
been affected by the illness at some point during their lifetime may actually be a lot
higher.
Now, the illness can be triggered by a range of things, from infections to physical and
even psychological trauma.
Whilst the way the symptoms are created is progressively better understood thanks to
the efforts of medical researchers, there is still a lack of AGREEMENT regarding the
root mechanism that needs to be resolved to allow recovery.
Having said that, the World Health Organisation has actually categorised ME as a NEUROLOGICAL
disorder since 1969.
It’s important to note here, that NEUROLOGICAL is different from PSYCHOLOGICAL – so in
no way are they saying that the illness is imagined or not real.
So ME/CFS is a real physical illness with a very large range of symptoms and is still
not that well understood by the wider medical community.
What’s worse, is that people are sometimes not believed about their illness being real
or that poor information is spread suggesting the illness is purely psychological or not
real.
This can really be very upsetting and unhelpful for people experiencing ME/CFS.
But you can make a difference and help change how the illness is perceived by letting others
know about What Chronic Fatigue Syndrome really is.
Simply post a link to this video or embed it on your blog or website and give us a thumbs
up.
And for more details on what chronic fatigue syndrome is, you can also visit the website
on the link below and of course you can subscribe to the youtube channel and watch the full
series of videos including videos on diagnosis, treatments and recovery from the illness.
Hope you leave a comment below, and I’ll see you in the next video. 