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  • Hello lovely people!

  • Today were going to be discussing just exactly what is wrong with ME

  • [beat]

  • M.E.

  • Like... myalgic encephalomyelitis. It’s a- It’s-

  • Subscribe for more terrible medical jokes! Actually, that’s probably the last one.

  • Maybe.

  • Please add your own in the comments.

  • But genuinely do subscribe. And then click the bell notification because that’s ACTUALLY

  • the subscribe button now because YouTube likes to keep us all on our toes.

  • Which is fine. Fine. So fine.

  • Theyve got a point.

  • I could work on my ballroom dancing. [crickets fx]

  • [ding]

  • myalgic encephalomyelitis, orMEas it is commonly known-

  • Which is so unfortunate. I remember first being diagnosed and telling people and my

  • friends making the sameit’s all me, me, me with you!’ joke over and over and

  • being like:

  • Wow, youre so funny(!) And also I’m dying inside as youre 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 arejust feeling tired”.

  • Theyre notjustanything.

  • 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 funNo one knowswhen it comes to ME….

  • At the time of my diagnosis, they asked when I had last beenhealthyandhad energy

  • and I was likepretty sure I used to flop down on the floor in exhaustion as a toddler

  • and they saidwell write that you got ME at 8 years oldand I saidno, nothing

  • happened when I was 8” and they saidit 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 togetherbe coherent

  • [Groans]

  • It’s quite difficult to explain, I think, unless youve experienced it yourself but

  • imagine the drunkest youve ever been (or if youve never been drunk, I’m sure you

  • can use your imagination) and youre holding two positive magnets together and you just

  • want to clip them together butthey justwon’t… gotogether

  • 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 useMEandChronic Fatigue Syndrome

  • as is if theyre interchangeable becauseno 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 isjust being tiredand 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 livesand, 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 youre 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 asmoving through treacle’. Youre in a vat of the

  • stuff and youre 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 juststopped 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 saidyouve 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. Sonow were 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 youve 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 youve 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 theyve 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 asill enoughso receive very little help if any help from

  • outside sources including the government and family and friends.

  • If youre 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 theyre just too unwell to

  • continue. Their sleep is poor quality and theyll 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 theyre 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

  • youre 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. Youll

  • 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 depressionwhich 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 youll 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 behindon ME/CFS research.

  • What should medical bodies be spending on research? We can work it out by looking at

  • thedisease 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 indicatesfair

  • funding” – what each illness would receive if research funding was based solely on disease

  • burden.

  • Fair Fundingfor 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 sayssecondlike 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 patientschallenge 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 patientsvoices?

  • 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. Youll find

  • you fall out of your friendship group and that whilst theyre off doing wonderful

  • things youre lying in bed staring at Instagram Stories of the parties you should be at and

  • the trips youre meant to be on. Youll feel like you can’t provide when youre

  • meant to, youll worry about how youll get through the big life stages, what youll

  • amount to in life.

  • I’ve been struggling a lot this past week since were 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, were 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

  • Youre never letting anyone down, you know, youre not. This is just your story, this

  • is the challenge, and the world will continue and youll 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 youre feeling strong

  • then answer someone else.

  • Remember: by being kind to others, youre 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]

Hello lovely people!

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MEの何が悪いの?[CC] (What's wrong with ME? [CC])

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    林宜悉 に公開 2021 年 01 月 14 日
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