Today, I feel super, super pants

as evidenced by my lying on the floor.

Here we are.

Don't worry about my wrist splints, though; that's just because I flattened my hair

and I'm apparently such a delicate little flower that

that then requires the help of wrist splints.

Since I'm floorbound today, it'll be working from the floor.

It's given me an idea

to talk about

some more disability/illness-related stuff.

I do have a playlist for all of my disability-related videos, by the way.

If you want to see that, that's up above in the card.

I thought that I would talk to you about PACE.

"What on Earth is that?" I hear you ask.

Well, my friends,

it's basically the worst thing to ever happen to the ME/Chronic Fatigue Syndrome community.

It's bad science

and it was all lies.

I made a video back in Vlogmas time

about "What is Chronic Fatigue?"

And I talked then about how I was diagnosed

with Chronic Fatigue Syndrome

or, failed to say this...

Myalgic Encephalomyelitis,

or Chronic Fatigue Syndrome,

is a very controversial and poorly understood disease.

It affects 250,000 people in the UK

and about a million people in America.

Worldwide, it's estimated that it affects 30 million people.

People with ME experience a dramatic decrease in their stamina

for ordinary physical and cognitive activities.

There's a characteristic dramatic increase in symptoms

after minimal physical or cognitive exertion.

The myriad of symptoms also include

sleep dysfunction,

orthostatic intolerance

(that's basically your blood pressure),

and cognitive dysfunction, as well as pain and fatigue.

Most people with ME cannot work and 25% are confined to their beds

or their homes.

I am just above that group, in that I am not always confined to my house.

And now I'm not 100%

with being diagnosed with that

for reasons I am about to get into.

Basically, I have different doctors who say different things.

Doctors, what're you gonna do?

They only care about their own speciality.

Anyway, when I was seventeen, I was diagnosed with ME.

Though I had various other medical issues going on at the time

but it was decided that I also had ME

even though the symptoms overlapped with other symptoms

from disabilities that I was born with.

I was then added to the list at the ME Clinic in Bristol

which was ME/with something else.

Can't remember what else. Was it MS?

'Cause that's really random.

Like, ME and MS.

They are not the same thing.

Anyway.

I think it was an ME and MS clinic

and, as part of that, I had to go to various "therapy"

-type things

where I would go and talk to someone; they would ask me about my levels of energy;

how I'd been doing

and I had to fill in a chart every week

using different colours - that was fun.

I'll be honest, that was fun.

I had to colour in how much energy I had used

in a day.

Filling in the chart took quite a bit of energy, to be fair.

So I had to fill in a little chart

to see how much energy I was using.

And the intention was, after I had filled in this chart for quite a while,

I would then begin a process of steadily increasing my exercise

with a view to this making me better.

At the time, any energy output at all -

even eating,

because then you have to digest -

had a very heavy load on my body

and I then, after eating food,

could not really move for about three hours.

I just had to lie there while my body used its precious energy resources

to digest my food

to give me a little bit more energy

to maybe last a few hours

until I then had to go through the process again.

So worth it.

Most people who are diagnosed with ME/CFS

(yeah, the name - there's some controversy, that's why it's called ME/CFS)

(That's a different video!)

(Yeah, go back to my Chronic Fatigue video - that will tell you all about that)

Most people who have been diagnosed with ME or CFS

will have been told two things by their doctor:

Number one: that they need to exercise

and number two: that they should go and see a psychotherapist.

So, number one I already told about: I had to do some graded exercise and I

had to fill in some charts

although that didn't really get me anywhere.

The whole idea that ME or any of the things that I've been diagnosed with

were in somehow psychosomatic

which means that because you think they are true in your mind, your body then makes it happen.

Well, it just irks me. It just really, really irks me.

As I suppose it would when you're dealing with something and you're like, "Um...

my arm is paralysed"

(which is a thing that happens to me sometimes because I have a nerve disability, whatever)

Because I have a genetic disability that affects my nerves,

most doctors are like, "Ah!"

"Mmkay, well it's just to do with that. Give it some time."

"It will probably get better."

But, due to the fact that I had been part of the ME Clinic,

I then started to get another group of doctors

who, if I had a problem with my arm, for example,

would say, "Oh! That's just in your head."

Obviously, it's a very undercutting thing.

Thing is, I battled so hard--

Sorry, I don't really like using the rhetoric of "battling" or "fighting"

a disability or condition, because I think your body works best with it when you attempt to live in harmony.

I work very hard to accept my disabilities

and deal with them

as best I can.

To not let them stop me from doing things.

And then to have someone come in and say,

"Oh, but it's all in your head anyway"

"You made that happen"

"You don't need to be doing that work"

Ooo...

Gosh, that irks me.

That irks me.

If I was not a pacifist,

I think I'd use a stronger word than "irks"

but I am, and I'm a Quaker, so I have to deal with it.

You say bad things to us, we just crush it in a little ball

and then we put it down here.

That's not entirely true. It's fine.

Anyway, due to this new group of doctors in my life,

I at one point got locked in a psychiatric unit.

That was also tied up with food things, because they thought that I was anorexic

because I was a teenage girl and I was underweight due to my disability

that affects my digestive system.

But sure, sure, could be your thing, too.

I mean, it wasn't, but it could be your thing, too.

Even though I've been disapproven, but...it could be your thing, too.

I don't really remember everything that happened because I was too ill at the time,

but, suffice to say, it wasn't the best time of my life.

Fortunately I was able to get out, because one day I accidentally crushed my arm

and then they had to let me out to go to the main bit of the hospital, to get my arm seen to,

and then I was like, "Ha-ha! I am never going back."

"I'm gone. Bye-bye."

Day I escaped the psych ward.

The reason that I was recommended to have exercise and psychotherapy

was due to a trial

called the...

Otherwise known as PACE.

It was a large scale trial of treatments for people who have ME/CFS.

For the purposes of the trial, all of the participants were split into four groups.

They all received basic medical attention,

but one group was given Graded Exercise Therapy

called GET;

one was given Cognitive Behavioural Therapy,

which is a thing to do with your mind;

and one was given Adaptive Pacing Therapy,

which is all about thinking ahead, what you're going to do,

not doing too much;

and then the fourth group was just given standard medicalised care, that was it.

The PACE study "proved"

that after Cognitive Behavioural Therapy or Graded Exercise Therapy,

you will have a 60% chance of getting better

and a 20% chance of recovering entirely!

The only problem is...that you won't.

Although the trial became the foundation blocks of government guidelines

and medical guidelines

for ME and CFS treatment,

it was deeply flawed

as I am about to explain to you.

The results are, at best, unreliable

and, at worst, manipulated to produce a positive result.

Although many doctors at first went along with the results of the trial,

patients cried out that, actually, this really wasn't that great

because they're being sold a lie that talk therapy and exercise can cure ME/CFS

but then their own experiences proved very, very different.

When the trial first came out, it made headlines around the world.

The Independent newspaper reported, "'Got ME? Just get out and exercise,' say scientists"

Actual headline.

Actual headline.

But patients were very skeptical

because the results contradict the fundamental experience of having ME

in that any kind of exercise just makes everything so much worse.

I am far, far better

than I was ten years ago when I was first diagnosed

and I put that down to just

knowing my limits.

Managing myself much better.

Now I know that if I do something; if I have a day out

that I'm gonna be in bed for a few days afterwards

and I try, as best I can,

not to struggle with that.

But the best way I think mentally to cope with that

- at least for me, and maybe it works for you -

is to set yourself a little goal.

So, if I go to London for an afternoon

to go to some kind of...I don't know, work meeting or hospital appointment or something,

I know that the next day I'm probably going to be incredibly useless

So, I give myself the task of doing one Instagram post that day.

That sounds really minor, I am sure.

But it's not!

But I achieve it, generally,

and that makes me feel really great about myself.

What does not make me feel great about myself is doing a little bit of exercise,

feeling bad, and then someone telling me

I should do more.

After the trial was released and publicized,

so many patients disagreed with what it said

and fought to try and find out what had actually happened.

One patient

from Australia

managed to win a Freedom of Information tribunal

and gain access

to the trial data.

I don't know why I had to say that in that way. "Trial data."

It was discovered that the PACE authors had altered the way in which they measured improvement and recovery

to increase the apparent benefits of their therapies.

Most notably were the changes in criteria for effectiveness

and recovery.

Also bear in mind that the patients are generally scoring themselves.

How improved they feel;

how much they feel they're able to cope with their day

et cetera, et cetera

Most notably, at the very start of the trial, all participants filled out an SF36

which is a short-form health study

with thirty-six questions

(didn't see that one coming)

that assesses health-related quality of life.

A score of zero represents complete disability

and a score of 100 represents no disability at all.

So the things that are assessed in this are:

limitation of social activities because of physical or emotional problems,

bodily pain,

and limitations in usual role activities.

Vitality, energy and fatigue, that sort of thing.

At the very start of the trial,