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