Home Orthostatic Training at Newcastle University for OI in CFS

Sasha

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An ME Association news post about a photography project on ME (interesting in itself) includes this:

"The crux of the research being carried out at Newcastle University involves looking for the biological marker that predicts chronic fatigue. Professor Newton and her colleagues are investigating whether certain parameters highlight chronic fatigue and will use this knowledge to help devise simple, non-invasive treatments to improve patient's lives.

Over half of the patients they have studied showed dramatic changes in blood pressure or increased heart rate when they stood up. Although most people will show some change, it is a marked difference in patients with ME.

Professor Newton believes the problem could go way back - to when we evolved to stand upright thousands of years ago. "We used to have our heart and head in line and now we're upright, it looks likely that some people have physically evolved more successfully than others and can therefore cope better with the move from sitting to standing. It is a physiological response to the stress of standing up, as not enough blood is getting to the muscles."

One of the ways Professor Newton and her team have been helping people with ME is through the use of HOT (Home Orthostatic Training). This process mimics the tilt tables used at the University but does not need any specialist equipment, so is easy and cost effective to use. It works by resetting the pressure receptors in the body, through a series of simple exercises. "​

Anyone know anything about HOT?
 

Sasha

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Oh, here it is:

"Hot Therapy Participants within this arm were asked to stand with their upper backs against a wall and their heels ~15 cm from the wall with a cushioned 'drop zone'. They were asked to maintain this position without movement for up to 40 min or until they experienced prodromal symptoms, presyncope or syncope."

I got this from an account of Prof Julia Newton's pilot study on HOT for syncope (fainting). Don't know if there is anything out there on results (this study doesn't offer any - it was a pilot with too few patients to detect a difference).
 

Sasha

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I provided a link for the above study that didn't work so I've removed it. However, I've now found an RCT done by Prof Newton - it's a small one because it's a feasibility study but it's interesting:

Eur J Clin Invest. 2010 Jan;40(1):18-24. Epub 2009 Nov 12.
Home orthostatic training in chronic fatigue syndrome--a randomized, placebo-controlled feasibility study.

Sutcliffe K, Gray J, Tan MP, Pairman J, Wilton K, Parry SW, Newton JL.

UK NIHR Biomedical Research Centre in Ageing - Cardiovascular Theme, Newcastle, UK.
Abstract

BACKGROUND: Orthostatic (Tilt)-training is an effective treatment for neurally mediated hypotension (NMH). NMH is a frequent finding in chronic fatigue syndrome (CFS). We evaluated home orthostatic training (HOT) in CFS in a randomized placebo-controlled feasibility study.

METHODS: Thirty-eight patients with CFS (Fukuda Criteria) were randomly allocated to daily tilt training (n = 19) or sham training (n = 19) for 6 months. Haemodynamic responses to standing were performed in all subjects using continuous technology (Taskforce) at enrolment, week 1, 4 and 24. Symptom response and compliance were assessed using diaries.

RESULTS: Two patients (one from each arm) withdrew from the study. Fourteen patients in each group complied completely or partially, and patients found the training manageable and achievable. Compared to the sham group, blood pressure while standing dropped to 8.0 mmHg less in the HOT group at 4 weeks (95% CI: 1.0 to 15.0, P = 0.03). At 4 weeks, the HOT group had higher total peripheral resistance compared to the sham group; mean difference 70.2, 95% CI: -371.4 to 511.8. Changes were maintained at 6 months. There was no significant difference in fatigue between groups at 4 weeks (mean difference 1.4, 95% CI: -13.5 to 16.2), but there was a trend towards improvement in fatigue at 6 months. Compliers had lower fatigue compared to non-compliers.

CONCLUSIONS: A placebo-controlled study of HOT in CFS is feasible. HOT is well tolerated and generally complied with. A likely physiological rationale for HOT in CFS is related to reductions in orthostatic intolerance. An adequately powered study including strategies to enhance compliance is warranted.​
 

Navid

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One of the ways Professor Newton and her team have been helping people with ME is through the use of HOT (Home Orthostatic Training). This process mimics the tilt tables used at the University but does not need any specialist equipment, so is easy and cost effective to use. It works by resetting the pressure receptors in the body, through a series of simple exercises. "

Anyone know anything about HOT?
what are the simple exercises to be done at home....i'm very interested in this...as this is one of my main problems.


thanks
 

Sasha

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what are the simple exercises to be done at home....i'm very interested in this...as this is one of my main problems.


thanks
You and me both, Shebacat - I still can't find a reference to the "exercises", just to the standing, despite much googling. Anyone else know anything?

Meantime, here's an interesting overview from Prof Newton.
 

glenp

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Interesting

I dont know where it is, but keeping the legs exercised is supposed to help. The leg muscles are supposed to help with pushing the blood bac
 

flybro

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LOL @ standing still for more than a few minutes.

when OI/POTS became too much for me I was exceptionally fit, still able to outrun teenagers!

I went form running up and down ladders and trees, swimming in the sea, throwing heavy garden furniture and petrol lawn mowers around, to not being able to do any of these things as the OI/POTS became dangerous and caused a fair few falls, and some very dodgey near misses in the car.

I have experienced being strangled twice, the feeling is very similar to the OI/POTS I experince, even down to the floor suddenly feeling lop-sided and loud noises in my head like a buzzer. So I firmly beleive that the cause is a lack of oxygen geting to my brain, and for me, exrecise excaserbates it.

I stay active when I can, but some days I can't stand up long enough to take my blood pressure, and on another day I can go up and down stairs 2or3 at a time.
 
P

potsrecovery

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I still think Dr. Levine's method for orthostatic training looks far more promising for treating OI....and I think in part because of his background in studying weightlessness induces orthostatic intolerance in astronauts and his studies in physiology and exercise. The HOT therapy sounds kinda like a college student experiment.
 
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There's more about it here, they explain how to do it and it sounds useful. At least it's simple, free and can be done in your own home.

http://www.dizziness-and-balance.com/treatment/rehab/tilt training.html

I don't faint, but if I have to stand for a while I have to lean against something, and I feel my brain shutting down. For me it's all about the head, it begins to feel like a block of concrete. Don't know if this rings a bell for anyone.
 

Sunday

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I'm more in the fainting category, though I bet there are other cement-heads out there. Actually, my experience is very similar to flybro's. I only passed out once, early on when I thought if I could muscle my way through it I'd be all right. I realized that, had I fallen differently, I could easily have hit my head on the corner of the counter or table, really hard. After than I paid serious attention to the preliminary signs so I wouldn't get to the passing-out point.

Interesting about the comparison between this and strangling, it makes total sense to me that lack of oxygen could be the problem. My acupuncturist worked on my stomach/spleen meridian for this one, she says that it's the one in charge of distributing energy to the upper body. My brain fog did get better, but I'm thinking the thing that really may be working for my OI/POTS is ubiquinone, right now I'm doing 200 mg 2x a day. This is the third time I've tried it: the first was a 10-day sample (50mg/day); I went on an upswing from a crash, and when I ran out, I noticed a downswing. (But there were a lot of variables.) I ordered some more and wound up taking more than I'd planned because I was doing an indexing project (to see if my brain could work enough fo me to work). So I ran out again, and again went down, but I also had other factors contributing to the crash. A few days ago I got my order of ubiquinone and I don't think it's a coincidence that for the past few days my OI is somewhat better and POTS has been much better, no gasping and heart-pounding after a short walk uphill.

Sorry if this is a thread hijack! I'm just interested in anything that will work for this; my brainfog's getting better but the OI/POTS keeps me from taking much advantage of that. I have been interested in the gravity suits and the training program also looks worthwhile - if I don't get lucky and have the acupuncture and ubiquinone do the work for me.
 

Sunday

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flybro, this is just my take, but on those days when you can go up the stairs 2 or 3 at a time - maybe save some of that energy back, if you're not already doing it. I used to have many days when I could heave heavy things around for awhile, but the last time I moved I overdid that and got much, much worse. I think of it as a water tank; I try not to run my tank entirely dry. Or even low, if I can manage it.
 

Carrigon

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I almost passed out in the shower tonight. For me, showers usually trigger it. Even when I try to make them colder, short of making it coming out in cubes, it triggers it. But I had another day this week where it just got triggered on its own and it was really, really severe. Couldn't stand up or sit up.

Something caused this in us. I just wish they would find it. Whether it was a viral trigger or something else. Something did this to us. And it needs to be reversed.
 

Sasha

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I started this thread over a year ago - just wondering if anyone has been treated by Prof Newton's team?
 

Esther12

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I'm interested in Newton's work too. I've only read a few little bits, but her papers read as if she thinks patients deserve to be spoken to honestly... that alone makes her a hero in my book.
 

Sasha

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Hi Esther - I did a google filter on her stuff in the past year and this interesting link came up - it's an account of a talk she gave at Edinburgh.
 

Esther12

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Hi Esther - I did a google filter on her stuff in the past year and this interesting link came up - it's an account of a talk she gave at Edinburgh.
Thanks for that Sasha. Hmm... tilt standing. I've been doing graded 'standing up' for activity management recently - I could try and add in a tilt.
 

Sasha

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I tried lowering my footrest by an inch every three weeks for several months and it was all going well until suddenly, it wasn't - am back to where I started. Still, I can't exactly call it tilt training! But I had hoped it would gradually improve my OI/activity threshold.