Aquatic therapy as treatment intervention for CFS: a pilot study (Australia)

[CFS_for_19_years]

Aquatic therapy as treatment intervention for Chronic Fatigue Syndrome: a pilot study - 28/09/2016
http://scu.edu.au/news/media.php?item_id=15161&action=show_item

People diagnosed with Chronic Fatigue Syndrome are being encouraged to take the plunge and join a new pilot study at Southern Cross University investigating the benefits of aquatic therapy as part of their treatment.

“We are researching a novel approach to the management for Chronic Fatigue Syndrome,” said lead researcher Dr Suzanne Broadbent from the University’s School of Health and Human Sciences.

“Aquatic exercise and hydrotherapy are recommended types of physical activity for people with Fibromyalgia and muscle pain. However this type of exercise has not been investigated with people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.”

Be sure to read the interview by Sasha Nimmo (ME News Australia) and excellent comment by John Muir:
https://meaustralia.net/2016/10/07/aquatic-therapy-study-at-southern-cross-university/

(Sasha) 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.

(John Muir) 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.

 

[CFS_for_19_years]

About ten years ago I was encouraged by a behavioral therapist to take up some form of volunteer activity - it could be anything of my choosing as long as it got me out of the house. Since I have a disorder of burning feet, I rarely wear shoes (this greatly increased the burning pain), I opted to volunteer at my local YMCA to help with children's swim lessons. I also had experience as a competitive swimmer and could walk 30 minutes twice a day without deteriorating, so I thought it would be a good fit.

My volunteer sessions lasted 45 minutes and consisted of herding squirming toddlers in chest-deep water. I didn't feel particularly out of breath at any point and was able to drive home. However, once I was home I had to take Vicodin for the rest of the evening for the all-over increase in muscle pain. I volunteered for three sessions one week apart and decided it wasn't worth it to continue.

There have been times while sick with ME/CFS that I was able to do a short swim, however, I only attempted to swim AFTER I had achieved a baseline of being able to walk 30 minutes daily without deterioration.

Swimming may sound like a benign activity, but even with my experience as a competitive swimmer, it was much harder for me to swim (or walk in chest-deep water) than it was to do 30 minutes of walking.

 

[Neunistiva]

Water causes bigger PEM for me than anything else. Maybe it's all the energy the body expends trying to maintain the body temperature.

 

[Kati]

Suzanne Broadbent is not reading the most recent science, since Davenport et al, all the way until Naviaux et al?
Let's exercise them because everybody should exercise.

This said I would like to hear from fibromyalgia patients who are being told to exercise, and I would also like to see what their metabolite are at?

 

[daisybell]

I used to love swimming. It's a bad move for me now - far too aerobic....

 

[Sidereal]

Potentially dangerous study for those who may crash while in the pool and start to drown.

 

[Neunistiva]

Potentially dangerous study for those who may crash while in the pool and start to drown.

I wish. Then at least they would know it's dangerous.

No, no, we will try our best and appear normal. And then spend next two months writhing in pain and misery in darkened room and they will proclaim their research a success.

 

[sue la-la]

It's perplexing that so many exercise physiologists and rehab specialists DON'T UNDERSTAND that our metabolism is broken - and that increasing activity can cause long-term harm.

I'd prefer that research money is spent on identifying & treating the physiological causes of our fatigue. When those have been treated, exercise will be possible - and SAFE.

I tried exercise in a hydrotherapy pool, as part of a hospital inpatient / outpatient rehab program. The water pressure supported my body weight, and it was warm - but getting out of the pool triggered partial fainting. Travelling to the pool was exhausting. My body wasn't strong enough to be doing the exercise, and i had a major relapse - was 95% bedbound for about 18+ months, with nasty neurological and cognitive problems (eg i had difficulties counting to 7).

The physiotherapists had almost zero understanding of our illness, and necessary precautions (i suspect they'd been drinking the PACE Trial Kool-aid). There were NO objective measures to indicate how much activity is safe for each person on each day.

I've found heart-rate based exercise & pacing a LOT safer, and can be done in micro-bursts at home.

 

[taniaaust1]

I almost did down last time I went swimming alone (like another here I used to be a competitive swimmer too), I will NEVER go swimming alone again as long as I have this illness, its way to dangerous

I was having fun and wasnt aware how fast I was tiring and by the time I realised it was too late and I was actually going under while trying to get back to a safe place. I ended up swallowing so much water and truely thought I was going to drown, it was a very scary experience.

I then as soon as I very luckily got in a safe place (still choking on water), I collapsed and couldnt get back up, this experience completely wiped me out.

I've tried to share my experience on that article so I hope it gets approved and comes up. (I couldnt even join a study such as this one, the water temperature they are doing it in is at a temperature which makes me ill with the low blood volume. I wipe out and get sick and crash very fast in a some heated pools. I start to get unwell when it hits 26-27C).

 

[trishrhymes]

 

[Sean]

I am (was) a strong swimmer and spent many many days of my childhood hard at play in pools.

But gentle low-level swimming is one of the worst things I have tried since getting sick. And I tried many times.

No idea how they got this result. Completely at odds with my personal experience.

 

[Valentijn]

There was a pool at a hotel we stayed at during the summer. I mostly floated around lazily for about half an hour. It felt nice being weightless.

Then I got out of the pool, and for the first time I understood what people meant when they described their legs as feeling like lead. Not just heavy, but extremely dense, and barely responsive. I could barely get back to our hotel room, even though it was right next to the pool.

I'm not sure why, but half an hour floating around in a pool triggered some extreme OI. Hopefully they have an ambulance on stand-by for the pool "therapy" sessions in this trial.

 

[AndyPandy]

I have had a number of GPs recommend hydrotherapy to me. They just don't get it. It works for patients with arthritis so they think it will work for ME.

I tried moving my limbs around in the water for a few minutes in a pool a year or so ago and I was so fatigued by it that I needed help to get up a few steps and sit on the side of the pool. I couldn't get up properly with assistance for ages. Then I slumped in my wheelchair and was wheeled away with crushing fatigue.

I used to do aquarobics and went to the gym pretty much every day. In my experience being supported by the water is one thing but the resistance offered by the water is deceptively tiring even when you are fit.

 

[Jan]

Your replies really emphasize the point that absolutely NO form of exercise should be recommended for ME patients until the biological aspects of the disease have been fully researched. It is causing harm and exposing patients to unnecessary risk

 

[taniaaust1]

I'm not sure why, but half an hour floating around in a pool triggered some extreme OI. Hopefully they have an ambulance on stand-by for the pool "therapy" sessions in this trial.

No they wont need an ambulance, they will just recruit people for their study who didnt have ME/CFS in the first place as they are being lax over who they recruit.

Its about time when ME/CFS studies start being forced to recruit people who are more sure to have ME/CFS. Some how standards need to be set.

sighs, Australia seems to be leading the ME/CFS exercise studies currently as we also have that gaming one currently going on over in my city. I partly put blame on poor ME/CFS societies over here who have been bad at advocacy due to stuff put up on websites with some of the articles they put up. Researchers and others read all that bull (the poor media articles from the UK). and now look we have some stupid exercise studies going instead of the funding put to more useful things.

 

[Sean]

In my experience being supported by the water is one thing but the resistance offered by the water is deceptively tiring even when you are fit.

This. Floating is great. Trying to move against water is exhausting.

 

[CFS_for_19_years]

From the interview:

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!”

Some background of the Principal Investigator, Dr. Suzanne Broadbent:

Exercise immunology; cardiac and respiratory rehabilitation; chronic fatigue syndrome; exercise for chronic disease groups and older populations; injury prevention

Selected works:
https://works.bepress.com/suzanne_broadbent
19 journal articles, 4 book chapters, 9 conferences, only 4 of which concern ME/CFS

Irregularities in red cell distribution width and lymphocyte concentration in individuals with Chronic Fatigue Syndrome
Abstract: http://ijhsnet.com/vol-3-no-4-december-2015-abstract-7-ijhs
Full text: http://ijhsnet.com/journals/ijhs/Vol_3_No_4_December_2015/7.pdf

Compared to non-CFS, the CFS group had significantly higher frequencies of above-normal red cell distribution width (RDW), above-normal erythrocyte mean cell volume (MCV), previous/current iron deficiency, cardiac symptoms, recurring sore throats and headaches, poor sleep, joint and back pain. Conclusion: Significantly higher frequencies of abnormal RDW, MCV and lymphocyte concentrations in CFS participants may be associated with iron deficiency and immune cell dysfunction.

Graded versus Intermittent Exercise Effects on Lymphocytes in Chronic Fatigue Syndrome
https://www.ncbi.nlm.nih.gov/pubmed/27116645
A discussion was already started here April 2016: http://forums.phoenixrising.me/inde...exercise-effects-on-lymphocytes-in-cfs.44323/

 

[Mij]

My own experience with walking in water is that it is much more exhausting than regular walking. It's not "weightless" when you are pushing against the water to walk. We have a heated pool where I live and it was just disastrous for me. I almost fainted when I got out.

Before I became ill I was also sensitive to whirlpools with heated water, so I'm not sure it suits me either way.

 

[helperofearth123]

I actually have improved twice (and then returned to normal illness again) from what I attribute to swimming in the sea with a snorkel. I traveled to the coast of the Mediterranean sea about 5 or 6 times to visit someone for about 10 days each time. Two of the times we spent all day everyday on the beach and I snorkelled a lot. In the evenings on these visits i started to feel great, I walked about 8 miles once. The times we didn't go to the beach and snorkel much I got no improvement, so I think it was the snorkelling.

My theory is this. Swimming with a snorkel is very different that swimming without one. With a snorkel every 5-10 stokes you can take a break, have a few breaths and recover without having to keep swimming. You can just float there while you let the aching that built up go away. Without a snorkel you have to keep swimming relentlessly. So I think the snorkel allowed the swimming to be so gentle that I could keep doing it for a very long time. The gentle circulation effects that swimming had manually massaged the blood around (my guess) and that caused the improvement.

So I'm actually pro-swimming for CFSers so long as its with a snorkel. (but I don't think they are doing that here).

 

[hellytheelephant]

@Mij I had a similar experience to you. I can't believe they won't listen. Exercise OF ANY KIND makes us worse. I could'nt give a **** if it helps other conditions ( although I am pleased that it does) That does not indicate that we would be helped by it.

I feel that in the future people will look back at what medics put us through and be amazed at the inhumanity. We know that exercise makes us worse- if we all know it why won't they listen!? ( sorry for the rant!)

I was advised by a physio at the pain clinic to 'work through the pain' and go to the pool once a week- not to swim just to get in for 10 mins and do simple walking/stretching. After 2 weeks of increasing flare-up it was suggested I continue to go but don't exercise. Of course for us, getting dressed, getting into the car, going into the changing room etc is probably more 'exercise' than most of us can cope with.
The subsequent flare-up lasted a couple of months.