Hi, my name's Dr. Dianne Shanley. I'm a clinical psychologist
and the director of the Psychology Clinic at Griffith University.
Griffith University is also the home to the NCNED or the National Centre of Neuroimmunology and Emerging Diseases.
This Centre is leading the research literature on ME/CFS or chronic fatigue syndrome.
Patients with this disease often have challenges getting the practical, financial, and emotional support, to help them cope with the illness
to improve their quality of life and to minimize any further deterioration.
They can also have difficulty finding practitioners who have training in the latest evidence relating to the illness.
Ketra is a patient of mine who has ME/CFS. She lives in a nursing home due to her profound level of disability.
This video consists of a 4-minute photo story of Ketra's journey with ME/CFS
and it gives insight into how devastating this disease can be.
It also has short talks by the healthcare team who are helping Ketra to improve her health and
who spoke after the Gold Coast screening of the movie, Unrest.
Thank you. I hope you enjoy.
Hi, my name is Ketra, this is my story.
I've always loved the water. In high school, I can remember the guidance counselor saying
You're good at science and love sailing, you should be a marine biologist.
After school, I went to sea and did my skippers tickets.
Working as a first mate or chef on luxury yachts for years. I had a great life.
I loved to travel and by 25, I'd sailed a lot of the world from Istanbul to the US, Panama, and
And like most 25-year-old female yacht crew, I knew my days at sea were numbered.
You need to be young, very tanned, and preferably blonde for those jobs.
No one stays young forever.
I knew my life was going to change dramatically in the next five years.
But I didn't expect this...
I'm now 32, and I live in an aged care facility on the dementia ward.
I spend most days and nights in my room staring at the ceiling,
When I first got sick with ME it was very confusing.
I looked healthy and if I did nothing,
I felt healthy,
but any exertion would cause sore throats,
headaches and body-wide pain.
Then I became sensitive to light, noise, smells, and most foods.
I had to stop walking my heart rate would hit
220 just walking to the bathroom.
Then after sitting or laying down it would plunge to 40.
I'd have chills and then burning pain all over for hours after each trip.
I tried to so many things to get better:
supplements, medications, IVs,
everything I could but I got worse and worse.
Thinking became too hard.
I couldn't imagine colours.
Words lost their meaning.
I just counted breaths,
to get through the pain.
It was very tough.
But watching my mum get sick
was much harder.
Knowing what she was about to lose and seeing her go through the same illness cycle of hope,
denial, and suffering,
was really difficult,
but now we've learnt to listen to our bodies.
I know that when my feet get cold it means I've overdone it.
If I start to feel hyper or rushed I've also overdone it.
I won't take any medication that makes my heart rate jump as they aren't good for me in the long term.
I've also learnt about avoiding artificial and natural
anything that triggers my symptoms I avoid,
and I meditate a lot.
The thing that's helped the most though is heart rate based pacing.
I think that anyone who's newly diagnosed with ME, or suspected of having exercise intolerance
should probably get a metabolic test and learn about the safe zones and resting heart rates. I'm lucky that
being in aged care,
with lovely carers and nurses has meant that I've been able to rest enough;
stay within my safe zones, my heart rate and to slowly improve.
I can now let a little light into my room and into my life.
I can enjoy colours,
touch therapy, and friends
but aged care homes are not
appropriate for M.E. patients.
We need quiet chemical-free areas. And we need people to accept this disease for what it is.
It's time for Unrest.
There are millions missing.
I wish my story was unique or even rare, but it's not.
There are over
250,000 Australians with this disease,
millions of people missing from their lives around the world.
Jen Brea, an American woman made the movie documentary Unrest,
which I decided to screen on the Gold Coast,
with lots of help from key volunteers:
Adrienne, Kathy, and Josh
and I invited the health professionals that have helped me with my health
to come and speak about the best ways to support patients now.
Now we're going to move into the
speakers phase of the evening.
Depending on which doctor you go to they're often very focused and will see different conditions.
and you'll have various names for the condition as well depending on who you see,
and getting the big picture is that we're still searching for that.
Diagnosis of this condition has for many years been based on symptoms.
The CDC Fukuda definition
and the Canadian definition the International Consensus definition
I felt embarrassed to be a doctor hearing some of the stories on that
movie. And I think we as doctors have to get much better at saying
as Jennifer Brea said in her TED talk. I don't know.
I can tell you're sick.
I don't know what's wrong with you, and I'm not even sure how I'm going to help you,
but at least admitting we don't know is a damn good start.
Hopefully in years to come we'll have the treatment of ME/CFS as part of the medical curriculum.
We certainly don't at the moment
There's one test that I learnt not from med school or from
journals, but from my patients. Thankfully my patients are sufficiently up to speed with ME/CFS treatments,
That they've educated me that there is a site called the Bateman Horne Center in the U.S.
Who developed a test that helps us check for orthostatic intolerance?
Don just mentioned, P.O.T.S syndrome: postural orthostatic tachycardia syndrome
Many ME/CFS patients suffer from it.
First of all when you're going to do this 15 minute lean test
You need to educate a GP so I suggest you download the brochures, then you go to stand them up against the wall
Looking at their feet.
Then you go to monitor their pulse and blood pressure every minute while they're standing there if they can last for the whole 10 minutes.
And in no time at all that's what her feet looked like.
I think it was 2 minutes it took for that to be the appearance.
That doesn't happen in normal people.
People who've got their autonomic nervous systems not working properly get this sort of an appearance.
Where you see the change in heart rate over time
she started with the resting heart rate of 62 and at the 10-minute mark she's gotten up to 128,
doing nothing except standing. That is not normal!
I hope that that's just a little bit of hope and inspiration for people to at least go and get their case documented.
Certainly whenever I refer patients onto other healthcare providers, which is the role of GPs to sort of somehow try to coordinate
all the other care providers involved in a patient's life,
mentioning that this test has been done,
might just get you over the line and convince that health provider that this person is absolutely genuine.
You can see here a test fitting conducted these tests are done on a treadmill or on an exercise bike
and basically, we're measuring a number of physiological variables.
An important thing we do in the test is measure some threshold points, and those
threshold points in a healthy person, might occur at quite a high intensity of exercise
Then in contrast to this we can see the aerobic metabolism of
someone with ME/CFS and you can see there's a stark contrast
there. Much diminished ability to burn fat
aerobic capacity and much more reliant on
anaerobic metabolism when they work.
We also see that the thresholds
can occur at much lower work rates and,
It's important even for an athlete to to not spend too much time above these thresholds
but certainly important for someone with ME/CFS.
I guess when we analyze these graphs and compare the difference to healthy individuals
we have to really come up with a new definition for
exercise because our standard definitions for exercise don't really suit the ME/CFS case.
For example with anaerobic threshold it might take a healthy individual running at quite a reasonable pace to reach that threshold.
But someone with ME/CFS may do that with activities of daily living,
including housework or even just personal hygiene. So that makes us they have to think very differently about
what is exercise for someone with ME/CFS?
How do they manage that through the day when many of your daily activities become
exercise? And then on top of that we also have to consider that this person is going to recover from exercise
much more slowly, a much slower rate than we're traditionally recover from exercise
Now in terms of pacing
heart rate monitors can be a useful tool with pacing because
you can set the heart rate monitors to alarm when you go above certain
thresholds and that's giving you warning signs that you need to rest or schedule in rest and recovery.
Heart rate also
can help define for a person when they are actually resting
and recovered. So heart rate monitors can be useful there and looking at heart rate data
retrospectively over time, combined with things like activity and symptom logs, can help someone build a framework for
themselves. A picture of what activities they can
get through in a day, and how much rest they're going to require around those activities.
I mean everyone wants to live a full life, so
pacing is something that requires
discipline on the part of the person.
And it's very difficult - when you want to go out and and do things, social things, do normal
sort of daily living things, that you're missing.
So heart rate
alarms can be a good way of keeping you in check and keeping you honest and maybe even helping your carers keep you honest also.
Then we come to exercise therapy.
Exercise for a lot of people with ME/CFS is just not even
possible. The exercise therapy and talk of that has to come with a big warning because when they crash
it can be for weeks or months.
So whether a person can exercise or not is really the first question.
Exercise Programs just need to be massively modified. Loads need to be drastically reduced,
and by that I mean the intensity of the exercise
drastically reduced to a point where people might even start their exercise programs with exercises on the floor.
The interval of exercise set, needs to be controlled and marked recovery
strategies need to be added. So again, recovery from an exercise set may be laying on the floor
and certainly much longer than we normally use because there is a very high risk of symptom
exacerbation. And that can last for weeks or months and that's definitely what we want to avoid.
What we may lack in physical strength, we certainly make up for in will and determination!
The main challenge is to actually restrain patients from doing too much.
It is just from the exertion of speaking,
it affects my speech.
The sheer number of symptoms experienced by patients during a crash
confuses physicians and patients alike.
Often the patient's crash is delayed and symptom exacerbation doesn't show straightaway.
Heart rate abnormalities after exercise or exposure to a trigger can be seen in their heart rate traces.
We are well advanced, we believe, in forming the basis for a diagnostic test
Clearly we are very cautious in the terminology we use,
all of the evidence that we have, must be scientifically rigorous,
but we're moving forward.
We now understand that a group of
receptors or ion channels called transient receptor potential ion channels
have a critical role in allowing
Ions such as calcium into the cell. Ions like calcium are fundamental to how cells all through the body
behave, and how they fulfill their functions.
We believe that fundamentally
there is a change in the genes that transcribe these proteins that make up these receptors.
Professor Sonya Marshall-Gradisnik, co-director of the NCNED with professor Donald Staines at Griffith University
elaborates on just where in the body the transient receptor ion channels are located.
Many of these ion channels are involved in thermo detection, chemical risk detection, nociception,
and they're involved in detection of threat. They are found also on acetylcholine receptors involved in that threat response.
But as you know not every animal responds its own way to threat
And so you have these mixed responses.
My clinical focus is looking at reducing the threat stimuli
and reduce the threat reactivity there are some chemical ways of doing this,
decrease the ion channel activations,
and there are ways of doing that increased resilience and part of that where appropriate is exercise training.
Diet is part of reducing the threat.
And the N of 1 trials, the anecdotes the YouTube videos are not the answers.
We need good randomized controlled trials based on genotypes
that we're actually in the process of getting. So that's what I'd like to sort of summarise.
firstly, it's important to note the lack of biological
hypothesis to support graded exercise therapy or cognitive behavioral therapy in CFS/ ME.
As the pathology we have identified in this illness specifically involves disruption to physiological responses to adverse stimuli
including: stretch phenomena, physical activity, and other stimuli noted above,
NCNED asserts these interventions are contraindicated and potentially harmful.
Regarding properly considered pharmacological treatments,
we are currently addressing this matter, and we have manuscripts accepted for publication.
Many ME/CFS patients struggle to accept that since getting the disease they have started to react severely to things that they love
Such as: exercising,
socialising, working, and to everyday items like: perfumes, cleaning products, noise, food and light.
ME/CFS is not a psychological disorder so the role of psychology in ME/CFS is limited to supporting patients.
Psychology can assist people with ME/CFS
To accept that they have a chronic disease,
to cope with the emotions relating to the disease. To manage the disruption to their work or school and their family
and to help them redefine their life.
Patients can have challenges with major proteins,
whether it's gluten or other grains and problems possibly with dairy and soy and
natural chemicals as Ketra mentioned.
Another challenge is to make sure their diet is nutritionally adequate, which for some people
We can't actually have them have an adequate diet because their diet's so limited.
We put foods back into their diet and they end up with a reaction
And then there's another challenge of trying to supplement then appropriately which they also react to, so it's um
It's definitely a condition, which makes you think outside the box.
From an allergy point of view
one of the interesting studies that the group that found at Griffith is that
mast cells, which are an allergy cell, get activated and there is more of them.
We're not even supposed to find them in peripheral blood,
but in patients with
ME/CFS, the team at Griffith has been able to identify them and have a couple of papers on them
It's an interesting aspect.
But also they interact with nerves.
Nerves when they're say in danger tell these mast cells, which are professional immune cells to get involved in helping.
We know mast cells get activated when we have a splinter or a mosquito bite. They swell up they itch. In the bloodstream
it's happening on the inside.
amount of money invested in research,
compared with other conditions, is incredibly small in this illness.
I want funding to go towards diagnostic testing.
I want funding to go towards figuring out the mechanisms behind this.
The majority of ME people who are
stuck at home, stuck in bed can't even go to the bathroom by themselves, they can't..
it takes so much energy for them
just to lift their hand to their face.
The severe can't leave their beds.
The severe need 24-hour care.
The severe need tube feeding.
The severe can't even look at a screen.
The severe can't talk.
So that's why we're being the voice for those patients.
I think it would be wonderful if people could get a diagnosis and get a diagnosis early and get treatment early.
I hope you enjoyed the video.
Here are some resources that patients find helpful.