Dr Benjamin Levine's POTS exercise/diet programme - what about CFS?

I'm embarrassed to be posting so many threads about orthostatic intolerance but have just been diagnosed, am trying to understand it and find out how best to manage it, and there are lots of interesting questions that I thought best kept separate to be of most help to most people!

Anyway, I've just read all of Elisabeth Rybak's fascinating blog about following Dr Benjamin Levine's three-month POTS/OI programme. She's about halfway through and improving. You can read the whole thing if you click on the green "2010" in the righthand sidebar just under "Blog archive" (hi Elisabeth, thanks again for posting on my other thread!). Here's the background to her blog.

Dr Levine is a cardiologist with a special interest in OI, including as seen in astronauts when they return from space (!). He has devised a treatment protocol for it consisting of a training programme involving recumbent exercising in the gym within certain heart rate limits, weight training, diet (including extra salt) and other non-drug interventions that aim to recondition the body. He appears to be getting good results and will be publishing a paper on it this summer, detailing his protocol (to a certain extent at least; not sure if it will be enough for others to follow it).

Elisabeth has POTS/OI but not CFS, as I understand it (please correct me if I'm wrong, Elisabeth!) and I wondered whether the programme would be suitable or dangerous for those of us with both. The conditions overlap in many but are not the same. Dr Levine's unit will send your doctor the treatment protocol if you sign up to it but I'd be reluctant to raise the question of exercise with my doctor without first feeling confident that it would be OK for people with CFS.

The key difference from other exercise protocols (which I would agree are generally risky and possibly dangerous before anyone lays into me about GET!) is that these are done while sitting (recumbent bikes, rowing machines) and within a heart rate range appropriate for people with OI. Despite his OI patients also suffering from exercise intolerance and being quite severely disabled, many seem to be getting improvement.

However, having read Elisabeth's description of it, the protocol sounds terrifyingly intense and I would be extremely worried about relapsing. Her first session was, I think, 50 minutes of exercise on a recumbent bike or rowing machine including a 10-min warm up and 10-min cool down, all "within protocol-specified ranges". In some of the later sessions she was too tired to move from one machine to the other and for several weeks couldn't walk upright to the changing rooms afterwards! I wouldn't dare do any of that with ME/CFS unless others had gone there before me and lived to tell the tale, I'm afraid!

Does anyone have any knowledge/thoughts on this for people with CFS as well as POTS/OI? I realise that Elisabeth isn't allowed to be specific about the protocol prior to publication of Dr Levine's paper, which I respect.

Cort, do you think there's scope for an interview with Dr Levine on the potential or otherwise of this treatment for people with CFS who also have OI/POTS?

Very much looking forward to hearing everyone's views...

Sasha,

I have appreciated all of your OI posts! I actually think it is important enough to CFS that it should have it's own category. And it is one thing we can do something about with some success.

When I first went to my CFS doctor, he did a tilt table test because he said most of his patients have OI and other symptoms of dysautonomia. I did it thinking I would be one of the exceptions, only to find out I had POTS. I think my heart rate went up to 160. I can't believe I never noticed. More recently, my daughter has developed POTS and NMH.

Staci Stevens has done some of the best studies on exercise and CFS. She has an organization called Workwell Foundation that works with CFS patients on pacing and exercise. They advised me to wear a heart rate monitor and keep my heart rate below a certain level (120 bpm, for me) during daily activities. I found that doing this reduced my symptoms significantly, and all I really needed to do was slow down and occasionally stop and rest. They also advised exercising lying down for strength training, and limiting heart rate during exercise. Based on that, I think Dr. Levine is on to something.

The other advice I was given was to exercise in intervals - 5 minutes exercise followed by 5 minutes rest, for example - and to start slowly and add time gradually. They said you shouldn't exercise on bad days, and it the exercise caused PEM, you should cut back. This is where Dr. Levine's protocol might get us in trouble.

My daughter has recently started taking online classes. She couldn't manage to be in school regularly, but she can manage some activity. I don't want her to become any more deconditioned that she already has, so I have had her going for short walks wearing the heart rate monitor to keep her heart rate low. So far, so good. (Obviously, this wouldn't work for someone who is more severely ill.)

I am really anxious to see Dr. Levine's study when it is published. Even if it is too ambitious for those with CFS, I think his protocol might be able to be adapted to work for us.

I have read a discussion of the difference between people with POTS and CFS, and people with just POTS. I will try to find it and post it.

Lesley

Just to clarify, Workwell would not let me start an exercise program if I was in a cycle of pushing and crashing. The pacing part came first. The initial program involved 4 repetitions of 4 exercises, using 2 lb weights and a rubber exercise band. If there was no exacerbation of symptoms after 2 weeks, I could add one additional repetition. This was not GET!

Hi Sasha - please don't be embarrassed. It's great that you're looking for info. It can be so tiring just trying to find info, and then overwhelming trying to figure out what is good info........ And many of us have one of the forms of OI and are interested.

I'd say the protocol is not possible for anyone with mild to severe ME/CFS.

I'm a fan of Staci stevens at the Pacific Fatigue Lab. The podcast on appropriate "exercise" for people with ME/CFS at the 2008 Calgary conference (also Klimas and other good ones) was fantastic. It can more clearly explain why we can't exercise this much or this hard.

The site is slightly challenging to navigate, but has podcasts (on the right) and handouts (on the left). FOr handouts they give you the code to use for both the username and password.

Here are the links for the podcast, her slides, and the 16 most asked questions. It is still on my list to transcribe this lecture as I find the info so well explained and supported. Or, if anyone likes it and wants to give me, oh, I mean us, a really nice present?????

If you have to go through the main site for some reason, here it is.

Well - to tease your appetite:

IF,

This looks like great info, but I can't get to it! For the slides and handouts, I end up at a log in page. What do I do?

Lesley

Hi Lesley,
I was afraid the direct links might not work. So, you could start at the UCalgary main site

click on podcasts at the right, then find the CFS Calgary 2008 link
OR
Click on handouts on the left , and same (note that here, they give you the code to use as both the username and password)

Or you could start at the mefmaction page they mounted the conference and have direct links to some of the offerings.

Hope that works. Let me know if it doesn't.

if:Retro smile:

Sasha you know I love your OI posts

I can't believe how long I've thought OI info didn't pertain to me when it definitely pertains to me. I can't read enough about it, and I can't process most of it!

Lesley, do you mean you started wearing a heart rate monitor watch? I'm thinking of getting one to give me some clues, besides how I feel, because it's easy for me to ignore symptoms some times.

Oh - Lesley - I didn't see your post as I was composing mine.

Lucky you to work with Staci Stevens. And thanks for letting us know re Workwell - I hadn't heard of it.

I'd be interested in the POTS + ME/CFS vs POTS article - and your take on how to adapt Levine's protocol when it comes out.

if:Retro smile:

IF - I'm in! Can't wait to dive into all this great info.

Kerrilyn - Yes. I have a Polar heart rate monitor (chest strap and watch). They had me keep a log of my heart rate for a few days, then used that to set a limit. When the alarm goes off, it's time to sit or lie down. I don't wear it all the time now, but I will put it on for the day to reevaluate my activities. Recently, my daughter's heart rate went up to 145 standing in the kitchen toasting a bagel, but she can go on a short, slow walk without any problem. Here's a good article about using a heart rate monitor for pacing: http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope

This is all such great info! Thank you everybody!

I can see I'm going to need a heart rate monitor and looked for one that vibrates instead of beeps because I'd like it to warn me if I'm overdoing it when I'm out in public! I found this one by Oregon on Amazon UK (UK people, if you go to Amazon via ME Research UK's Amazon Affiliate link and buy something, they receive a cut of between 5 to 9% of every purchase). It also comes with a chest strap.

[By the way, I'm having log-in problems at the moment so if I keep disappearing for a bit, my apologies and I'll be back when my tech issues are sorted out!]

Yikes, Lesley! Some sort of record, surely! I think that OI must be massively under-diagnosed in CFS because we just can't tell we've got it. When I was doing my 30 mins standing, about 20 mins in I was up to 110 bpm and could feel my heart beating in my chest so hard I didn't need to take my pulse but of course we don't stand so still and so quietly in normal life paying attention to this stuff and don't notice. I've started another (!) thread urging people to get themselves tested for OI even if they don't feel dizzy on standing.

This is very interesting - how did you get advice from the Workwell Foundation? I can't find a website for them (though I've found the Pacific Fatigue Lab here, I can't find a Workwell Foundation link). Did you have to go there or can they advise people long-distance (I'm in the UK)?

I hope your daughter does well with it - it must be awful for her to be missing so much school.

You can reach Workwell Foundation at 209-599-4047. They don't seem to have a website. They will work with you by phone. Back in 2008, three sessions were $200. That got you to the point of having an exercise prescription.

Sasha, I'm another OI-thread appreciator, since it's one of my most debilitating symptoms and I'm interested in trying things that would at least mitigate it. Didn't know they existed until I read these threads!

Thanks, Lesley! Do they have an email address? It would be good to get some preliminary info from them without paying for an international phone call (but sounds like it may be worth it!). Maybe they will be prepared to Skype!

Thanks, Sunday - I just feel such an utter twit for not having realised earlier that OI is also probably my major symptom (i.e. the fatigue that being upright causes, as opposed to "exertion" as such). I really think it should be billed as "difficulty standing" rather than "feeling faint/dizzy standing". I think there ought to be a major public health campaign on it, not least by the ME charities - I'm sure loads of us have it but are being misled into ignoring it by the way it's normally talked about and we're all missing out on potentially effective treatment.

Cort has done very well to have "difficulty standing" as the link title to his info page on this, I think.

Sasha:
I've finally learned how to handle the exercise question and know what works for me....when my functioning level is below say 3 I can't do anything, but if it's up around 4 AND if I am taking high dose CoQ10 then I can do NON aerobic exercise such as muscle strengthening if I do very few reps very far apart, only a little. I've had to rebuild muscle multiple times after being bedridden for a year at a time. Without the CoQ10 I couldn't do it at all. But with the CoQ10 I can do my little pilates routine which was designed for me to do it horizontally (which also makes it more possible then standing exercises). If you have a chance, ask a physical therapist to come up with a horizontal muscle strengthening home based program for you. Even if you only do 3 reps of one exercise you just increase very slowly every other day. The reason increasing muscle strength is so critial to OI is because their are three things that keep blood flowing:

1) the heart beat
2) the smooth muscles of the blood vessels (which can't work right in adrenergic OI)
3) the skeletal muscles because the bigger they are the more they put pressure on the smooth muscle of the blood vessels as you move around. That's why moving around slowly is always better than standing still, the skeletal muscles are being worked and their movement improves blood flow by pressuring the blood vessels.

Thanks everybody, this is all really interesting!

I had a look at the Staci Stevens podcast (“Therapeutic Exercise and Activity in CFS/ME” at the Calgary symposium - here is the direct link - please note that it only has audio).

To briefly summarise, Staci and her team are university-based exercise physiologists. She says that research shows that in CFS, the aerobic system of energy production is damaged and so aerobic exercise causes postexertional malaise. Fortunately there are two systems of energy production - aerobic and anaerobic - and she believes that our anaerobic systems are working fine and can be trained so that we can get more function.

She says society has been brainwashed into thinking that aerobic exercise is the only form of exercise but this isn't true. Surprisingly, athletes in non-endurance sports such as soccer, netball and so on are mostly using their anaerobic systems during their games. They train using short periods of exercise of about 30 seconds at which point your body stops using the aerobic system and the aerobic system kicks in. Then they rest for about 90 seconds and then start again.

This seems to be the downside, that the anaerobic system is in operation only for a short period before the aerobic system kicks in. Apparently she showed a slide in her presentation showing how the aerobic system takes over. I think she must have meant something like this one.

I think, but I'm not sure, that the idea is to extend the amount of time that the anaerobic system is playing a large part in energy production.

Dr Lucinda Bateman on the IACFSME site (full text here) has written this:

“Staci Stevens, MS, an experienced CFS exercise physiologist in California, instructs her patients to wear a heart rate monitor with an alarm to notify them when the heart rate has climbed to a predetermined level. She measures a CFS patient’s anaerobic threshold objectively during graded cardiopulmonary testing, notes their heart rate at the anaerobic threshold, and then uses that heart rate value to estimate the anaerobic threshold during physical activity. It is typically somewhere between 90-110. (Linda’s was 80!) Staci counsels patients not to exceed that heart rate during physical activity. When the alarm goes off, the patient stops the activity and sits down to rest. Whether avoiding a defect in oxidative metabolism, an escalation of orthostatic hypotension, or some other mechanism, this may be one tangible way of staying below the threshold of relapse and avoiding post-exertional malaise.”

I don't understand how heartrate relates to anaerobic threshold or indeed how the whole thing relates to everyday life as opposed to “exercise”. I also don't know what training does - whether for example it increases the heart rate at which you reach the anaerobic threshold so that you can function normally for longer. I'm going to have to do some reading! Can someone else can explain the whole scenario? Dr Yes? I'm no biologist! :worried:

I looked to see if there were any clinical trials on this but all I could find in a not very thorough search was the abstract below (link here) by Jason et al. (I can’t get the full paper) published in the Journal of Clinical Psychology in Medical Settings. It doesn't inspire confidence because it is using psychological control conditions for a physical intervention, the treatment of the outcome measures looks a bit funny and the anaerobic activity is not sufficiently well described in the abstract for me to know if it's anything like Staci Stevens' approach.

Abstract Non-pharmacological behavioral treatments for CFS have been suggested as promising. These trials have tested protocols composed of behavioral, cognitive and cognitive–behavioral interventions but there have been few efforts to differentially evaluate their outcomes. The primary purpose of the current study was to evaluate the effectiveness of nurse delivered non-pharmacologic interventions. In the present study, 114 participants diagnosed with CFS were randomly assigned to four 6-month interventions. The interventions were: cognitive–behavior therapy, cognitive therapy, anaerobic activity, and a relaxation control group. The study found that these interventions led to increases in several areas of functioning, with more consistent changes occurring among those participants in the cognitive condition. For the 25 variables in this study, significant change occurred for 28%, 20%, 16%, and 12% of the variables for the cognitive, cognitive behavior therapy, anaerobic activity, and relaxation conditions, respectively. However, the majority of participants continued to be diagnosed with CFS following the treatment trial. Implications of these findings are discussed.

I'm also curious about how her work relates to Dr Benjamin Levine’s work on orthostatic intolerance. I can't see her mentioning orthostatic intolerance anywhere but she she seems to be making reference both to exercises done lying down and to exercises such as standing up from a chair. It seems to me that the strength of Dr Levine’s program is its use of supine exercise to allow for orthostatic intolerance but it's downside is that it is far too full-on for people with CFS. The Staci Stevens programme seems to address the aerobic limitations of people with CFS but not the orthostatic intolerance side, unless there is something I haven't seen (quite possible!) or forgotten (even more possible!). Can some genius come along and put the two approaches together?! Could anyone interest them in collaborating?

0h, I just found that there was a Staci Stevens thread a while ago, here.

There is mention of a paper in the library about her approach but I don't know how to access it.

So much to read, so much to think about!

Hi again Lesley - I'm coming back to your comment again now that I've seen the Calgary podcast!

I've seen this 5 mins on /5 mins off suggestion a few places (including Dr Nancy Klimas, I think) but in the podcast, Staci talks about anaerobic training being 30 seconds on, about 90 seconds off. Can you remember what the rationale was for Workwell wanting you to do 5 mins/ 5 mins? Or was that what you had worked up to after starting at 30 secs?

Oh! Here's the Staci Stevens paper in the library. Freakily, I can only see the library while on the web using Firefox, not Windows Explorer (how very Harry Potter); here is the library.

ETA: Having just read it, it just seems to be about dividing CFS patients into subgroups according to their exercise capacity. I'm not sure it's relevant to the discussion here (I may have the wrong paper!).

I can't even view it with Firefox? Says I don't have permission?