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.
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,
the average age of participants in the study
was 39.
A "normal" thirty-nine-year-old should score about 93
on this
and again, the new normal on this trial was now 60.
Despite the fact that the score of 60 is close to the mean physical function score,
which is 57,
of patients with class 2 coronary heart failure.
I mean, sure, you're dying of heart disease, but
according to the ME study, you're fine.
Other thresholds were also changed.
Another issue with the trial, of course,
is the use of subjective main outcome measures.
People were marking themselves on how they were feeling,
whether they felt any better;
whether they felt any worse.
Since patients obviously knew where they go to Cognitive Behavioural Therapy,
or Graded Exercise Therapy,
and were told that if they had this, there was nothing to stop them from getting better,
it kind of stands to reason that when later asked to grade themselves, they very hopefully said
that they were feeling lots better now!
Even if they actually weren't.
Why is this so terrible? Well.
One of the reasons is that the PACE trial showed that there was no problem
with having Graded Exericse Therapy for ME patients.
Might help them get better or, you know,
they might just continue along.
Everything will be fine.
In contrast, a survey conducted by the ME Association
in 2012
showed that 74% of patients
had their symptoms worsen after a course of Graded Exercise Therapy.
Just 74%, I mean.
It's fine. It's just making people a whole lot worse.
Critics of the study have therefore questioned
whether people taking part in the study
in the Graded Exercise Therapy group
actually increased their levels of activity enough
to see these negative effects.
Before the trial, all participants had a step fitness test
and at the end of the trial, they all had a step fitness test
and they largely had not improved.
Which, if people had been doing Graded Exercise Therapy for a long time,
probably should've improved.
Leading us to possibly conclude,
that they didn't actually do that much activity.
Once the data was released by the Freedom of Informaton Act,
different scientists re-analysed it
and the improvement rate fell from 60%, with 21% becoming totally recovered,
to just an improvement rate of 22%
and only 7% actually recovering.
And even that rate of 21%
improving after receiving Cognitive Behavioural Therapy and Graded Exercise Therapy
might be misleading
because of the group that received only standard medical care,
10% improved.
This suggests that 10% of all of the groups would've improved
without receiving any therapy or exercise
and thus there's only 10% that were actually helped.
Which is not to say that if you have 100 people with ME
exercise therapy helps 10% of them
that it's not a great thing.
That's wonderful.
But the fact is that it's also going to harm 74%
according to the ME Association trial.
So maybe that's not a great thing just to be putting in your medical guidelines.
Throwing out there; telling everyone they have to do.
Conflicts of interest
were also highlighted
I'm just doing this with my fingers because I think it makes me look slightly evil.
The PACE [?] investigators also acted as consultants for large insurance companies
and one of the main professors, Professor White,
had also worked as an advisor to the Department of Work and Pensions,
their main funder of the PACE trial,
with a special interest in reducing social security benefits to people with ME
or CFS.
Despite these many serious concerns about the PACE trial,
it continues to be used by UK government agencies
such as the NHS and the National Institute for Clinical Care and Excellence (NICE).
Considering that recently immunologists have found clear patterns in the immune systems
of people who have ME or CFS,
and physiologists have reported seeing
some very unusual physiological changes
post-exercise in people who have ME/
CFS,
I think it's safe to say that there's something else going on.
That a little bit of exercise and a little bit of talking
probably isn't going to cure the problem.
But one thing this study is is a great excuse
not spend money researching a disease of some description
that is a little obscure and difficult to find out what's actually happening
and will probably require a lot of money.
I'm gonna leave a link in the description down below
to a blog post by Jenny, who blogs as tipsform,
about an experience she had going to the hospital and, because she has a diagnosis
of ME/Chronic Fatigue Syndrome,
she wasn't given the care and attention and
really
what was going wrong with her wasn't looked into
because her diagnosis is something that is classified as psychosomatic.
This is similar to many medical things that have happened to me in the past
where I've been to A&E and when they find out that I have a condition
that affects some part of me, they're like, "Oh, well, it's probably that, it's fine."
Even when it's really not
and it's something else, like that time that I had kidney stones
and she didn't believe me - until the kidney stones came out.
The knock-on effect of PACE is that patients who have been diagnosed with ME and CFS
are less likely to receive adequate medical tests
and treatment,
even for new symptoms that don't fall within the boundaries of ME.
Tilly! That's not helpful.
I really just wanted to make this video to share with you
a little bit about what PACE is in case you've come across it/heard of it
and especially if you haven't
because I think sometimes it is really important to know
what's behind doctor's actions.
Obviously, every single doctor out there
is trying their hardest to help everyone they can.
They wouldn't have gone into medicine otherwise.
Things like this trial can be very misleading for doctors who are just trying to do their job
and they can't always be aware the specifics, full medical background
and history of every condition.
Mainly what they see is just the guidelines that they're handed from the government
and if the government are mislead by trials such as this
then it's gonna have a knock-on effect.
The best thing you can do to help
is just to talk about it.
Tweet about it. Write a blog post about it.
Look into it yourself and see what you think.
Let me know in the comments down below if you or someone that you love has ME
and have ever been affected by the PACE trial
when it comes to seeking medical attention.
Let me know, as well, if someone has pressured you
into taking exercise and then you just felt really, really horrible
or if you've had to go to therapy
even though you don't really need therapy.
I hope you've enjoyed this video, even though it hasn't been the cheeriest one I've ever made.
I do have other cheery videos, I promise, on my channel
if you are new and you've not seen any others.
Go and see those.
Bye-bye for now, my loves, and I shall see you in the next video.