Hello lovely people!
Today we’re going to be discussing just exactly what is wrong with ME…
[beat]
M.E.
Like... myalgic encephalomyelitis. It’s a- It’s-
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Which is fine. Fine. So fine.
They’ve got a point.
I could work on my ballroom dancing. [crickets fx]
[ding]
myalgic encephalomyelitis, or ‘ME’ as it is commonly known-
Which is so unfortunate. I remember first being diagnosed and telling people and my
friends making the same ‘it’s all me, me, me with you!’ joke over and over and
being like:
Wow, you’re so funny(!) And also I’m dying inside as you’re making fun of my illness.
ANYWAY. ME is a chronic (meaning long-term) neurological condition that affects many different
systems in the body but most generally the nervous and immune systems. It’s commonly
characterised by pain, fatigue and post-exertional malaise-
Meaning you body struggles or fails to recover after expending even small amounts of energy.
It’s a really complex condition because everyone who experiences it has a different
pattern of illness and a different trigger that sets it off. Plus symptoms and severity
can fluctuate and change over time. ME affects an estimated 250,000 people in the UK, and
around 17 million people worldwide.
That’s a lot of people! And yet it’s a really misunderstood illness. I’ve previously
made a video about chronic fatigue, which I’m going to add to the cards above and
put a link to in the description. And although there are many similarities and differences,
neither are “just feeling tired”.
They’re not ‘just’ anything.
I talked about this in the chronic fatigue video but I was diagnosed with ME when I was
17 because I had all of the usual symptoms associated with it BUT it’s now thought
that I didn’t actually have ME at all.
According to my current doctors: ME is something that
starts after an inciting incident in a body that was previously healthy. Chronic Fatigue
is a symptom of a range of disorders and conditions and thus occurs in people with poor health
otherwise.
Can people with a different health condition get ME? I have yet to find a doctor who will
give me a definitive answer. Or do anything other than stare blankly at me. But props
to anyone who can answer that in the comments. And also: probably.
Oh there are so many fun ‘No one knows’ when it comes to ME….
At the time of my diagnosis, they asked when I had last been ‘healthy’ and ‘had energy’
and I was like “pretty sure I used to flop down on the floor in exhaustion as a toddler”
and they said “we’ll write that you got ME at 8 years old” and I said “no, nothing
happened when I was 8” and they said “it was definitely when you were 8” and I said…
Nothing. I was asleep on the floor.
So they diagnosed me with ME.
I do have some very similar features: even some seemingly very simple physical or mental
activities (or combination of activities), can leave me... debilitated. In bed, unable
to properly put thoughts together… be coherent…
[Groans]
It’s quite difficult to explain, I think, unless you’ve experienced it yourself but…
imagine the drunkest you’ve ever been (or if you’ve never been drunk, I’m sure you
can use your imagination) and you’re holding two positive magnets together and you just
want to clip them together but… they just… won’t… go… together…
why.
WHY?!
That’s me trying to put two thoughts together when tired.
You know that moment when a name is just on the tip of your tongue? It’s- it’s that
actress- you know, the- she was in the- with the- the- oh I’ll remember it later!
That’s me needing to go to the toilet.
It can impact me straight away or might take a day or two to kick in. Most often I find
it’s the day after the day after I do a big thing that it really kicks in.
[clap] So fun on Sunday! Two days after moving house...
Throughout this video I’m probably going to use ‘ME’ and ‘Chronic Fatigue Syndrome’
as is if they’re interchangeable because… no one has told me they aren’t.
But I guess they aren't?
The British NHS and the American Healthcare system use different terms as does probably
every other country in the world because no one knows what the hell M.E. really is.
The one thing that M.E. ISN’T is ‘just being tired’ and while I’m about to give
you a list of symptoms that DO fall under the M.E. heading, it’s important to remember
that not everyone will experience the same symptoms and as such, it's important not to
compare someone who has M.E. to another person who has the illness.
People with M.E. can vary enormously in their experience of the illness. For example:
Charlie can go to school for an hour a day but then has to rest.
Mary can go to school for one day a week but then has to rest.
Charlie was very severely affected at first but has been getting better ever since.
Mary fluctuates between mild to moderate severity without an upwards gradient.
Mary also has amazing hair.
The illness isn’t characterised by the pattern of experience: some people will get better
as if they were never ill in the first place, some people will find that whilst they don’t
completely recover they are able to go on to live happy, fulfilling lives… and, yes…
there are some people for whom M.E. is- and I think it’s completely justified to use
this word- progressive.
People have died from M.E., regardless of how marginalised it is by broader medical
establishments, people have died from it. And that shouldn’t be ignored.
Symptoms of M.E. include:
Feeling generally unwell- flu like symptoms, that nasty chill that covers your body and
makes you feel like you’re purely tender flesh from under a scab that has been picked
too soon.
This may include a recurrent sore throat and possibly swollen glands.
Pain in your joints or muscles. Nerve pains as if you have pins and needles all over or
a swarm of tiny spiders perpetually sneaking over your flesh.
Your muscles may twitch or
cramp and your guts will hurt along with your chest, like your ribcage is a vice.
Headaches and migraines are, of course, a major factor, especially in relation to light
and sound. You may become photosensitive or have hyperacusis, where light or sound becomes
physically painful.
My mother is very Scandinavian and whenever she sees a patch of sunlight she insists on
sitting in it. INSISTS. I remember her making me sit in the sun when I was ill because she
thought it would be good for me but it was as if sunlight was actually branding my flesh
and it itched like a burn or peeling flesh.
It was worst at the height of my illness for sure and even now I really struggle with spending
a lot of time in direct sunlight, especially on my bare skin. Sunscreen, kids, always wear
your sunscreen!
The oddest thing about M.E. are the symptoms that pertain to sleep. One would assume that
being exhausted would mean you could sleep a lot. Oh no, my friends! Definitely not!
Unrefreshing sleep is a common symptom, as is difficulty getting off to sleep or waking
up ridiculously early and then not being able to get back to sleep-
(that’s me. Once I’m awake, that’s it, I’m awake for the rest of the day!)
You might have sleep reversal, where you sleep only in daylight hours or you might have hypersomnia,
where all you can do is sleep.
Unsurprisingly, there are various knock-on affects of this, including problems with concentration,
memory and thinking in general. You might have a reduced attention span, short term
memory problems, speech and language difficulties and the inability to plan or organise your
thoughts.
Mentally, I like to describe it as ‘moving through treacle’. You’re in a vat of the
stuff and you’re trying to get to the ladder on the other side but the harder you push
the more it sucks you in…
Since ME is a disorder of the nervous system it also affects your balance, temperature
control, circulation and even your sweating. Fun fact: when I was really ill I didn’t
sweat. At all. I just… stopped sweating. Even when it was really hot.
You may also develop Irritable Bowel Syndrome while you have ME and become intolerant to
wheat or dairy where you weren’t before. It’s not uncommon to have a lack of appetite
or feel nauseous all the time.
And finally, a symptom I have trouble describing but I really want someone else to say they
have: does anyone else ever feel as if all of their internal organs are just too heavy?
Like all of your insides are just -phump- slipping out of your body?
Listing all of this I just ... COULDN’T RELATE MORE!
Maybe the doctors were right and I do have ME. I just developed it at birth or something…
or all of these symptoms overlap with my other conditions and I never had ME at all. Wow,
I wish I had a definitive answer for ANYTHING.
This is like when I went to the migraine doctor and he said “you’ve been having migraines
for 14 years and it’s killing parts of your brain.” And I was like…
“Okay, you going to do anything about that?”
And a year later I’m still waiting for a reply. So… now we’re all just waiting
while my brain plays Russian Roulette with itself.
That got dark.
I’m terrified. But at least I get to wear pretty dresses on Instagram!
[ding]
It’s important to mention that, like me, just because you have one issue doesn’t
mean you can’t get another. Even if you’ve been diagnosed with M.E., it’s important
to get new symptoms checked out by a doctor as they may be unrelated and a sign that something
else is happening.
If you weren’t sure before, I hope that you’ve realised from that list of symptoms
that M.E. is very real and very serious. The National Institute for Health and Care Excellence
(NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis,
systemic lupus rheumatoid arthritis, congestive heart failure or other chronic conditions.
Research shows that on health-related quality of life tests, people with M.E. score lower
overall on than those with other chronic health conditions.
A very big part of that is the stigma that people with ME face.
There are three levels of ME:
- mild. These people are mobile, look after themselves, are still working or are in education
but struggle with even light physical tasks and are unable to follow leisure or social
pursuits. Because they have less energy they’ve had to focus it on the things that keep the
lights on and a roof over their heads rather than doing anything enjoyable. They also struggle
with not being recognised as ‘ill enough’ so receive very little help if any help from
outside sources including the government and family and friends.
“If you’re well enough to go to work, why can’t you come to my party?”
“Because I’ll pass out in the potato salad, Janet!”
- moderate. People with moderate M.E. have reduced mobility and are restricted in all
daily living activities. Although they may have peaks and troughs in their ability level
and symptoms they have usually given up work or school as they’re just too unwell to
continue. Their sleep is poor quality and they’ll likely need a lot of rest periods.
- severe. At its most severe level, M.E. is life threatening. These people are unable
to carry out any activity for themselves or can only manage minor tasks such as brushing
their own teeth. They depend on a wheelchair for mobility, if they’re well enough to
leave their bed, and have severe cognitive difficulties. Any time they do expend energy
there will be a severe and prolonged after-effect. They will spend most of their time lying flat
in bed and are extremely sensitive to light and noise.
Despite the severity of the condition, people with M.E. face a lack of understanding and
awareness about M.E. Patients can experience disbelief and discrimination:
“I’ve come to work tired before, why can’t you?”
“I had a bad night last night too, that’s no excuse!”
Oh you fools…
you’re going to kick yourselves in the future when M.E. is better known!
(actually, we all know that type of people won’t actually ever say sorry or recognise
that they were in the wrong but it helps with your mental health to feel a bit superior
sometimes)
This is largely because the causes of M.E.. are unknown and are still being investigated.
Contemporary evidence indicates that there are likely to be a number of factors involved
but there is evidence that viruses and infections can trigger the illness and potentially the
way individuals respond to the different viruses create different subgroups within the illness.
Common viral triggers include glandular fever, herpes simplex, CMV, gastroenteritis and non-viral
triggers include salmonella, tuberculosis and Lyme disease among many, many others.
Living with M.E. has a huge emotional impact on you- everything is sudden and unexplained
and you have no idea what is going on or how and what the right thing to do is. You’ll
want desperately to get better but largely be given medical advice that only makes you
worse. Watch my video on the P.A.C.E. trial for why you SHOULDN’T push yourself into
doing exercise.
That’s just one controversy when it comes to M.E. however…
There are others
In February 2017 the Joint Commissioning Panel for Mental Health published guidance for mental
health professionals stating that M.E. is a functional somatic syndrome
- a term used to refer to physical symptoms that are poorly explained and may have a psychological
root
And recommended a referral to services for patients with Medically Unexplained Symptoms.
Again, that simply means that the cause for the symptoms is unknown or disputed- not necessarily
that there is an identifiable psychological factor. But in practice, most doctors who
use the term do think that the symptoms most likely arise from psychological causes.
Categorizing M.E. as MUS contradicts the World Health Organisation’s International Classification
of Diseases, which states that M.E. is a neurological condition.
Side note: most parents who have medically unexplained symptoms also have some level
of anxiety or depression… which may be because they have medically unexplained symptoms,
not the other way around.
I don’t want to minimise people who are affected physically by psychological forces
but it isn’t the case with all people and it’s important that the medical world doesn’t
use it as an excuse not to research ME.
If you look at this lovely chart below you’ll see the annual amount in millions the American
National Institutes of Health- the world leader in medical research- spent on researching
HIV/AIDS, Lupus, Multiple Sclerosis and ME/CFS in 2014 (I know that was a while ago but I
struggled to find something more current, I’m happy for you to correct me in the comments
if this is wildly different this year but even this optimist doubts it). Then we have
the prevalence in the U.S. (how many people have it) and then how that works out to spend
per patient.
HIV/AIDS affects around 1,200,000 Americans. $2,978 million
is spent on researching it each year, which breaks down to a spend of $2,482 per patient.
In contrast ME/CFS affects around the same number of people at 1,060,000 but the funding
is only $5 million a year and thus this breaks down to a spend of just $5 per patient.
In the UK, the spend is £4 per person a year, which is mostly spent on psychosocial research.
As National Institute of Neurological Disorders and Stroke Director Walter Koroshetz…
I will never be good at pronunciation.
As Walter acknowledges, “we are 50 years behind” on ME/CFS research.
What should medical bodies be spending on research? We can work it out by looking at
the “disease burden”- a technical concept that combines the number of people affected
by an illness with how hard it hits them, both in terms of levels of disability and
rates of early death.
The NIH spending by disease burden for a range of illnesses. That’s
funding on the left and disease burden at the bottom. The straight line indicates “fair
funding” – what each illness would receive if research funding was based solely on disease
burden.
“Fair Funding” for ME/CFS would be $190 million a year.
NOT 5.
As of now, 2019, a large body of published, peer-reviewed evidence concerning ME indicates
evidence of neurological, immunological and endocrinological biomarkers in ME sufferers.
Just because there isn’t currently a test for it doesn’t mean there won’t be in
the future.
The second controversy-
(she says ‘second’ like there aren’t 300 others...)
- is how to treat ME once someone has it. The NHS website recommends, cognitive behavioural
therapy, graded exercise therapy or medication to control the symptoms.
Now, I’m not here to bash CBT: talking therapy is great at helping you accept your diagnosis,
gain a better sense of control over your life, etc. It is obviously very upsetting to suddenly
become incredibly ill but I take issue with the NHS’s wording that they advise CBT to
help ME patients “challenge feelings that could prevent your symptoms improving.”
[beat]
I’m sorry, what now?
So it’s my feelings that were making my symptoms bad in the first place? So I’m
not getting better because I’m, what, too flirty today?
Do I take all of my examples of emotions from the Sims?
Yes.
There ARE physical conditions that have a root in mental ill-health and trauma, I don’t
want to marginalise those sufferers, I don’t want to exclude those people BUT… I just
don’t believe that ME is one of those cases.
With so little research, how can doctors override patients’ voices?
How can anyone say anything?
And then of course we come on to Graded Exercise Therapy, which I’ve spoken about before
in a video about the PACE scandal. I’ll put a link to that in a card above and the
description below.
This makes me so sad to talk about…
Many things with ME are unclear. It’s uncertain why some people get ME and others
don’t. It’s unknown why some recover fully and others only to a degree. Around one in
four remain severely ill for many years but there isn’t a pattern to it.
There's no pattern to anything.
Many researchers and organisations believe that ME/CFS is actually different illnesses
being dumped together in one pot. We don’t know.
What we do know is that It’s honestly deeply isolating being chronically ill. You might
have, like me, had to drop out of school or only been able to go part time. You’ll find
you fall out of your friendship group and that whilst they’re off doing wonderful
things you’re lying in bed staring at Instagram Stories of the parties you should be at and
the trips you’re meant to be on. You’ll feel like you can’t provide when you’re
meant to, you’ll worry about how you’ll get through the big life stages, what you’ll
amount to in life.
I’ve been struggling a lot this past week since we’re moving house and I want to be
able to do more to help pack but I’ve probably already done too much. I’ve been plagued
by migraines and exhaustion and I’m honestly not ready to be moving house today-
Yes it's today!
I’m panicking about how I’ll look after my children I don’t yet have whilst still
living with an illness that I thought at one point would get better…
Which is such a diversion of my panic!
My heart is just heavy and overwhelmed.
Sometimes I'm just too scared about expending too much energy to be excited...
I'm so scared about the process of moving that I'm not excited about my new house yet
But today is the day, we’re moving house. No matter how ill you or I get the world will
keep on turning, the pages keep getting written and there is something so beautiful in that…
You’re never letting anyone down, you know, you’re not. This is just your story, this
is the challenge, and the world will continue and you’ll always have a place in it.
But you don’t have to be alone, there are millions of other people in your position.
Leave a comment on this video, ask for a friend and see who replies. If you’re feeling strong
then answer someone else.
Remember: by being kind to others, you’re being kind to yourself too. And by making
this video I’ve realised I should be a bit kinder to myself.
I’ll leave some links in the description to organisations that specialise in M.E.-
I highly recommend Action For ME’s website, they have a great welfare and support service
that offers free and confidential advice.
You are not alone
And I’ll see you in my next video.
[Kiss]