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  • Hello, friends.

  • 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,

  • the scientists said that to even enter the trial,

  • a patient had to have a score of 65

  • on this scale, or below,

  • in order to be classified as having bad enough ME/CFS

  • that they were able to join the trial

  • Half-way through the trial, however,

  • they changed their idea of what "normal" was

  • and normal now began at 60.

  • So even though 65 had previously been the number that was, you know, the highest,

  • if you were 65, you just about fit into the trial

  • but now suddenly if you were 60, you were better?

  • To put this into some context,