by Sasha Nimmo
Southern Cross University (SCU) is running a pilot trial to see if aquatic therapy improves the self-reported wellness scores of people with ME, chronic fatigue syndrome (CFS), post viral fatigue syndrome, post infectious fatigue syndrome or chronic mononucleosis.
SCU’s Dr Suzanne Broadbent was researching various exercise modalities for an study and found that while aquatic or hydrotherapy is recommended for Fibromyalgia, it has never been trialled with CFS clients.
“There may be benefits for CFS clients who also have fibromyalgia and POTS or orthostatic problems (ie water pressure can improve circulation and venous return),” Dr Broadbent said.
The University’s media release said up to 75 per cent of people with CFS/ME also have Fibromyalgia (no study cited).
The trial will involve 10-15 patients (no control group) and is internally funded through a small seed grant. The researchers are hoping to get enough data to apply for a much larger grant which could also involve other clinics.
“Firstly, we are going to do a one-off short session with all participants to check that the stretches and exercises do not cause any symptom exacerbation on the day or within the next 24 hours. Then there will be 2 short sessions per week for 4 weeks; the length of time depends on the participants themselves. The majority will probably start only doing about 15 minutes duration; the exercises are going to be very low intensity, self-paced and we will be including a lot of stretching,” Dr Broadbent said.
The pool temp is between 27 – 29 degrees C.
The researchers rely on GP diagnosis and self-reported symptoms. (A nearby university found that Australian GPs frequently misdiagnose ME and CFS, two in five diagnoses don’t meet the Fukuda CFS criteria and less than a third meet the ICC criteria for ME).
The outcome measures will be 6 minute walk test (if clients cannot walk for 6 minutes then they can stop at any time and they will record distance and calculate walk speed); hand grip strength; 30 second Sit to Stand; shoulder and hip range of motion; FACIT fatigue scale; VAS 0 – 10 pain and tiredness scale.
Self-reported symptoms and wellness will also be recorded weekly. There are no invasive measures in this pilot.
Dr Broadbent addressed the issue of the PACE trial and graded exercise.
“Any progression is going to be self-paced. From talking to prospective participants, it would be likely that any progressions will be small and a matter of minutes over 4 weeks. It is an increase in duration not intensity that we would like to see.
“Just about the PACE trial; like many exercise therapists, I have a lot of concerns due to lack of reporting of exercise measures. I get sent a lot of information about it from people around the world and I find myself going back to smaller studies by different researchers that really report the types of exercises and give more specific results!”
Read about the findings of the aquatic pilot trial.
5 thoughts on “Aquatic therapy CFS and ME study at Southern Cross University”
I have already explored this area in practical terms more than a decade ago, and found it had a number of potential pitfalls.
First and foremost is a safety concern, that it might be conducted by an individual in an ‘unsupervised’ way, due to positive recommendations in the research. This possibly could lead to potential drownings.
Hydrotherapy uses water resistance, which a #pwme might not take into account and ‘overdo it.’ Also buoyancy, may ‘disguise’ levels of fatigue. A #pwme may also have trouble leaving the pool, or returning home after an exercise bout, due to increased ‘gravitational effect’ once they leave the water.
Just imagine ‘running out of energy’ in open water or an unattended pool?
These concerns can be accommodated in a supervised environment, and with adequate support systems, but what about unsupervised environments? Often research recommendations and guidelines fail to mention potential dangers and are sometimes adopted by people who don’t have access to qualified staff or supervised treatment.
In sports medicine, you often consider ‘environmental dangers’, which are often overlooked in the medical and exercise physiology literature. Exercise often does not take place in a benign or sterile environment, and there are potential for HARMS if environmental dangers are not taken into account.
Also many #pwme have chemical sensitives. Most hydrotherapy is carried out in chlorinated pools, which some #pwme might not tolerate all that well.
#pwme may also be temperature sensitive, and may find issues with this.
Other potential issues are photophobia, photosensitivity and difficulty coping with complex visual stimuli, which can occur in a group and pool environment. These sensitivities may exacerbate symptoms.
Heated pools may also cause problems for those that have neurally mediated hypotension:
http://www.njcfsa.org/wp-content/uploads/2010/08/4-11-Patient-Unofrmationon-Neurally-Mediated-Hypotension-and-its-Treatment.pdf
I know Suzanne points out benefits of hydrotherapy can include improved circulation and venous return, but you can also achieve this with other types of exercise.
You also need specific pool requirements:
http://www.eha.sa.gov.au/uploadFiles/documents/codehydrotherapy.pdf
http://almacen-gpc.dynalias.org/publico/Guia%20australiana%20de%20hidroterapia.pdf
I know Dr Broadbent has the best intentions for #pwme, but sometimes having an experiential insight gives you a certain advantage that some researchers who do not have #mecfs, do not have.
Having used hydrotherapy as a rehab modality for clients(don’t like the word patients), I know it’s advantages and limitations. Cost, access to facilities and lack of trained exercise therapists (no specific #mecfs knowledge) are just some of the cons for this therapy for #pwme. Typical community-type classes may not be appropriate for #pwme.
On the study itself. I know it is only a pilot study, but it should be right from the start. GP and self-reported symptoms are not sufficient for saying a person has a formal and accurate diagnosis of #mecfs . Most GPs don’t have the required skill set or experience to diagnosis #mecfs accurately. Self-reported symptoms also could potentially lead to non-#pwme being included in the study, which has the potential to skew data. Given the small sample size, this could be significant. A good reason for being very stringent in your subject selection criteria.
Also exercise response is very specific, Every exercise physiologist knows that if you train on a bike you do ‘better’ on a bicycle ergometer test, rather than a treadmill test. I know the six-minute walk is easy to implement and compare with normal populations, but will it accurately measure training effect gained from hydrotherapy?
Grip strength test? Not so sure, unless they are using hand-resistance paddles in the routine. I would use it in sport for things like judo or sailing, but #mecfs? I would have thought quadricep muscle strength testing is of more value. Maybe ease of testing and cost-efficiency?
The VAS 0 – 10 pain and tiredness scale also requires careful administration, and needs somebody who is thoroughly familiar with it’s implementation, and has a knowledge base of what can confound it’s implementation.
Also skeptical about 4 weeks duration? Is this enough time for physiological adaptations to exercise to take place? For example, measuring muscular strength gains(handgrip) after only 4 weeks, would it be true muscular strength gains, or an increase in neurological efficiency – the way you recruit muscle fibres?
Not trying to sound hypercritical of Suzanne’s intended pilot study. Her intentions are good, and she is well informed about #mecfs. She is also quiet aware of the problems with the #PACEtrial.
From my perspective, she is trying to examine an area that really needs further investigation, as to-date, most recommendations for GET have been simplistic and flawed. For that Suzanne deserves due credit.
However, if you want to get down to the nuts-and-bolts of it, the real issue is appropriateness of exercise therapy in #mecfs? Is it appropriate for all #pwme, or just certain sub-groupings of patients? You need to identify those, for whom exercise is appropriate! Another issue, is can you extend exercise training principles extrapolated from healthy populations, and apply them to #pwme? If a #pwme’s physiology responds differently to an exercise stimulus, than that of healthy individuals, wouldn’t it be prudent to study the limitations of exercise in #mecfs, before implementing standard GET principles in exercise programmes for #pwme. If not, it may result in potential HARMS.
http://www.meassociation.org.uk/2015/05/23959/
Often Post-exertional Malaise(PEM) is seen as a central issue with #pwme. Do most exercise therapists actually objectively measure recovery, or is it a guesstomate based on patient feedback; which may or may not be accurate? If you don’t objectively measure recovery, you can’t introduce the next exercise stimulus at the right time. Too early, and it can result in overtraining, and physical performance decrements. Not to mention the inevitable ‘crash’ that #pwme suffer when exposed to inappropriate exercise loads. Maybe there should be some exploration of the sports science literature, in how they address optimizing performance and recovery?
What really needs to happen, is that we need to explore the theoretical underpinnings of excise science and whether they are appropriate in #mecfs. It will probably eventually come down to individualizing fitness training principles to accommodate the needs of the individual #pwme, in an effort to minimize deconditioning and hypokinetic conditions. In other words, individualized exercise prescriptions.
To be honest, that is what every good professional exercise therapist strives for. Group settings and approaches are something the public health system implements for cost efficiency. The cost-efficient path may not be what is is best for individual #pwme,
Swimming for ME/CFS is a very bad move and if this did become a recommendation it will end up causing some deaths, I say this based on my own ME/CFS experience.
Im lucky to be alive as I almost drowned the last time I went swimming alone as I suddenly found myself too tired when I was out of my depth. I’d been enjoying myself too much to have been paying attention to my fatigue levels and by the time I realised I couldnt get back safely, it was too near to late. I ended up swallowing so much water due to this and really thought I was going to die. I then collapsed and almost passed out in the shallows when I made it there due to the sheer effort).
I have great concern over this study too if the ones being recruited for it are being refered by GPs as studies have shown that 2 out of 5 people diagnosed by GP are wrongly diagnosed and dont even have ME/CFS . https://meaustralia.net/2016/05/26/australia-2-in-5-cfsme-diagnoses-wrong/ . So I strongly suggest the canadian consensus criteria are used when recruiting for all studies or otherwise you will just be producing more badly done studies and the ME/CFS community already has had too many of those.
I have severe ME/CFS with some quite severe POTS and can say that I couldnt even enroll in a study like this if the water temp was that as I start to get ill due to the low blood volume involved in the illness when the temperature gets above 26 degrees C.
I know also a 4 week exercise program like this study is investigating wouldnt do a thing. I did my own exercise program when I was a bit better to the level I could do on without a crash and after 3 months had so little to show for it, I was left so extremely disappointed. (it had helped me run for an extra 7-10 SECONDS and that was all I achieved after 12 week so of no life value. In that same time people on the biggest losser TV show I had been watching had gone from being able to run what I originally could do to being able to run 10kms!). It wasnt worth continuing and putting all that effort into this and more worth putting that energy into my daily life things.
It saddens me that people just keep wasting research funding and researching and researching exercise and its when its so clear to most who ME that this just doesnt work, patients either are made worst or find their capacity to exercise just doesnt really increase to a worthwhile level (when it takes energy away from the rest of their life. This swimming study though goes one step further and may cause drowning deaths esp since ME/CFS can vary day by day and the ME person may not realise they have a bit less energy that day till they suddenly find themselves suddenly out of energy to do anything more.
Unfortunately, I saw a couple of uninformed comments on the PR forum, criticizing Dr Broadbent. I have corresponded with her previously, and I find her to be a very open researcher, who has studied the #mecfs exercise literature; including the work of Dr Mark VanNess. She is also one of those rare researchers who listens.
Let me be clear, her approach to exercise and #mecfs is not the same as that found in the #PACEtrial, and should not be confused with it. It is closer to the good work being done in this area by Dr Mark VanNess.
The main reason, I wanted to comment on Suzanne’s pilot study, was to relay some practical experiential knowledge. I also noticed some commentators on the PR forum also added their insights and experiences. Many of which I could relate to.
Constructive feedback leads to better research outcomes. So my intention was not to criticize Suzanne’s research skills or knowledge, it was merely trying to raise some issues she might not have thought of.
I was diagnosed with Fibro in 2000. Although, I do have overall pain that is managed with soaking in a hot bath with Epsom salt and Advil, it is the fatigue that is debilitating. I am currently on medical leave due to my fatique. I am doing aquatic therapy for 30 minutes 3 times a week. The day after therapy I am more fatigued and I spend most of the day sleeping or laying around. I go to therapy today and I am going to request the therapy to be reduced to 20-25 minutes to see if my fatigue decreases the next day. With the fatigue, I have question if I have CFS? I discussed with my Rhem and the diagnosis remains as Fibro. I have a sore throat, ear pain, headaches and sore lymph notes. My Fibro started after a stomach virus ( not sure how to spell shagella) this was also around the timr I stopped taking the pill. I had often asked if my hormone levels could be the cause of Fibro and I was told there was not a test to check hormone levels. In 2012, I was diagnosed with ER/PR breast cancer. I did have my ovaries removed. Could my hormones or the stomach virus have caused the Fibro and is there a certain aquatic therapy program the can be used while doing therapy.