Saturday, 14 November 2015

Heart Rate Monitoring & NICE Guideline for ME

NICE guidelines for ME contain a little acknowledged recommendation to keep "exercise" at between 50 - 70% of  maximum heart rate.


At first glance this would seem to suggest that patients can exercise at a brisk walk or gentle jog, because that's what healthy people need to do in order to exercise in this zone.

However the guideline clearly states that heart rate monitors should be used to keep exercise within this target zone.

 

This is important, because people with ME find that small exertions can escalate their heart rate to a much higher level than expected.

Here is some of my own data:


I recently wondered whether any of my ME friends had ever had a heart rate monitor suggested to them - so I asked on FaceBook and from my UK friends responding:

None had ever had a heart rate monitor suggested to them by a health professional.

So perhaps now is the time to insist that any "exercise" patients are advised to take, should only be done with the help of a heart rate monitor.

Perhaps this could this help patients avoid some of the harms reported with Graded Exercise programmes? 

[Edit to add: My own preference would be that patients are NOT ever pushed to exercise at all, but rather encouraged to stay within their limits using pacing techniques. I am aware that NICE pushes for increase. I don't agree. See previous post here.]

Personally:

I have been monitoring my own heart rate for over a year now using a Mio Alpha heart rate monitor and a phone app called Endomondo. It may not provide the full answer to my dilemmas, but I hope at least it helps me to notice when I'm over doing things and so make me slow up appropriately.

I hope others might also find heart rate monitoring a useful technique.

I created the Slide Share below in hope that this information could be useful to patients and medical professionals until such times that the NICE guidelines are updated. 




http://www.slideshare.net/SallyBurch/heart-rate-monitoring-and-nice-guideline-for-me


Post Script: 

Following a comment made below this post, and drawing also on my own experience,  I should mention that there can be times when heart rate appears deceptively low.

In my experience this does not necessarily mean a green light to push a bit more.  Caution is always advisable and only tiny changes to intensity or duration of "exercise" should ever be attempted.


Further Information

Useful Links: 
Pacing By Numbers by Bruce Campbell
Exercise Testing and Using a Heart Rate Monitor by Jennifer Spotila
FaceBook Group ME/CFS - Pacing with a Heart Rate Monitor

Other posts on Just ME:
Starting HR monitoring for ME Dec 2015
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014

NICE Guideline:  [CG53]

More on NICE guidelines for ME:
Margaret Williams August 2008


HEART RATE CALCULATIONS:

Maximum Heart Rate:
220 - (your age in years)

For me:  220 - 52 = 168 bpm  
(bpm = beats per minute) 

Calculating 50% of Maximum Heart rate:  
Max Heart Rate x 0.50
For me 168 x 0.50 = 84 bpm

Calculating 70% of Maximum Heart rate:   
Max Heart Rate x 0.70
For me 168 x 0.70 = 118 bpm

Thus my exercising zone should be between 84 and 118 bpm

25 comments:

  1. Great post, thank you. My readings are very similar to yours for activity. I was surprised how high my HR went up washing and brushing my teeth, and showering (even on a shower stool sends it stratospheric).

    Did you find that your HR also drops suddenly and then goes up again when you are 'active'. For example pottering in the kitchen my HR is usually around 110 (although I try to keep it lower by going slow) but it may suddenly drop to say 75 or even in the 60's. I wasn't sure if it was my HRM dropping out or my HR dropping!

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    1. Yes like you I can have quite a bit of variation - which of course makes monitoring difficult. I also find that sometimes on the day after a busy day (but before the delayed post exertional effects kick in around 2 days) that my heart rates can be low... this is deceptive, because I am not actually able to do "more" at that point and should be resting.

      So although high is a warning, low does not always mean all is well...

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  2. Sally once again a very well written and informative post. Thank you.
    It is amazing that this very important part of the NICE guidelines are not better known. As you so clearly point out everyday activities can send folk into a cardio workout , yet I wonder how many of the so called medical specialist that patients are forced to see understand this concept.
    The only people I have heard back the use of HR monitors are academic researchers,they also were the only people I have come across who even suggested exercise might consist of daily tasks,rather than walks around the block.
    Thank you for highlighting this , although diagnosed with Fibro rather than ME I also suffer badly from PEM.

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    1. Wearing a HR monitor daily is enlightening! And sometimes it is surprising the things that send it up wards. Concentration (eg writing these blog posts etc.) can send it upwards.... so I do try to do the work for them spread out over days (and sometimes weeks or months) rather than all at once...

      ... however I do admit to usually finishing in a flurry. Then I go quiet for a while. ;)

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  3. This is so important as so many ME patients also have POTS, i was diagnosed with pots after 20 year and have been using a heart rate monitor since the beginning of the year and it has really helped where as GET is damaging, using a monitor and exercising in 3 slots with a 5 minute rest in between I have built up from 3 mins exercise to 15 a great acheivement for someone with severe ME, thanks for sharing this, when I mentioned the monitor to the GET physio at my ME service it was frowned upon, but hey it's working where GET dosen't
    Clare x

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    1. I'm hoping that mentioning that HR monitoring is part of NICE guidance will help people faced with the pressure to exercise more.

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    2. Clare , I'm sure you are thrilled in making such progress with your activity.
      Can I ask ,when you started your HR monitoring did day to day activities such as detailed in Sally's blog fall within your "exercise zone"
      . If so how did you manage to increase your activity in a controlled manner so that you could begin to exercise using the parameters you mention in your reply. Also what form of exercise did you undertake and what increments did you use?

      Delete
  4. I experienced this sort of monitoring when I (very unfortunately) did a GET course at one of the PACE hospitals and the physio had us calculate our target zone just like this.

    Some of our heart rates were slow on walking,(while wearing monitors) and she was encouraging us to break into a run to get our rate up to where she thought it should be. Needless to say I refused to break into a run. But despite my low heart rate, I went into relapse the next week, a relapse that took between 5 and 6 years to even begin to calm down, and which I've never completely recovered from.

    But I have also had phases during the illness where my heart has been much more likely to speed up, similar to how Sally is describing her own experience in her blog. And I know that what I'm describing above is a different experience from using a heart monitor yourself to keep a check on how you are doing. But I just have to say, don't ever push yourself in any way to try and conform to something like this, and don't ever let anyone, health professional or otherwise push you to do so. There are various pieces of research suggesting heart abnormalities in ME/CFS and I'm not sure if NICE takes account of them at all. Hal K.

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    1. This is a dilemma. Thank you for mentioning it. I too have periods when my HR is lower, but when I really know I shouldn't be pushing. I think a high HR is a definite warning signal, but it is not infallible. I might add a short edit in light of this valid comment.... Thank you.

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    2. Interesting that some research has highlighted heart abnormalities in patients with ME/CFS I was not aware of this,

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    3. Hi Iceskatemum, some links for you :

      http://www.meresearch.org.uk/our-research/completed-studies/cardiac-function/

      http://www.name-us.org/ResearchPages/ResCirculatory.htm

      Hal

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  5. I never received this info when doing GET, never advised about it and never offered the use of one, and my GET was run by an expert with lots' of experience and close to the PACE trial and the writing of the NICE guidelines. Why?? It's appalling to be treated like this, told to push through and ended up bedridden yet Thu could have been avoided!

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    1. NICE guidelines are long over due for review. In the meantime why heart rate monitors are not being used is a big question!

      Delete
  6. Hi folks
    Interesting thread. Of course, NHS/NICE areen't going to GET this right as they are talking of exercise as therapy for ME, which it never really can be. Exercise/physical activity is a generally good thing, and I view it as an acceptable risk for some ME sufferers at some times. It has to be balanced against the risk of not exercising -> CVD, T2 diabetes etc.
    I think it's important to distinguish between resting heart rate (RHR) and exercising heart rate. RHR is a good indicator of health and fitness, generally the lower the better as a strong heart pumps the same volume of blood at lower rates as a weaker heart at higher rates. RHR can be raised through infection, stress or incomplete recovery. If RHR is raised, it makes sense that exercising heart rate at a given rate of work (eg. same person running a mile in 6 minutes) will also be raised. Thus with ME, exercising heart rates are likely to be comparably high.
    The only explanations I can give for the strangely low heart rates reported here (what values are we talking please?) would be (a) the person is naturaly or peviously fit and is having a very good day - no infection, well recovered, no stress, or (b) heart block - this is where the electrical signaling of the heart goes awry and causes beats to be dropped - there are 3 degrees of this and the 3rd degree requires fitting of a pacemaker. Studies have found that first and even second degree heart block can occur in elite athletes through their training, and it's also associated with some infections such as Lyme disease. You'd struggle to find any cardiolologist in the NHS who even knows any of this, let alone wants to talk about it, I know this from personal experience. Probably lots more to discuss about ME, exercise, heart rate!

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    1. Lots more research probably needed. I suspect recommendations for target heart rates are always going to have situations where individuals may need a different approach for various reasons.

      However knowing that this recommendation is in the NICE guideline is still useful, and can perhaps help people to query exercise recommendations.

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    2. Thanks to a heart rate monitor I found my RHR is going down to 56, 57bpm. When I was fit(ter) the usual rate was 70-72. So something is going on in my heart. Could it be that if there is less blood to pump (as explained in the Health Rising blog Chronic Fatigue Syndrome: the Small Heart Disease
      pm June 27th this year) the heart is just taking it easy?

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  7. @Sally
    NICE guidelines on ME can't be trusted as a reliable source, since they are based on the very flawed and questionably motivated PACE trial. The NHS uses phrases such as 'exercise therapy' and graded exercise THERAPY. This raises immediate questions - would anyone suggest that someone with flu should exercise to get well? They are treating people for depression, not ME. Exercise is useful as a preventative measure against major disease for someone who has got to a point of stabilising their ME. Personally, I have done a lot of intensive exercise with ME and found that my body adapts in a normal way, i.e. I get fitter. The ME doesn't go away though and is typically made worse...a price I accept. Once the NHS and their ME puppet masters come out and have this honest dialogue, and with some good research as you suggest, we can start to make progress, as I'm 25 years on and nothing has changed, indeed it's got worse. S

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    1. Agree NICE guidelines not reliable - Slideshare perhaps explains that more.
      Like you I hope for change soon... I feel a tipping point is on the way.
      Let's hope so!

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    2. So if we all agree that, why refer to NICE guidelines at all? Also, why does any ME sufferer attend a hospital ME service or engage with GP's once they have a diagnosis and have eliminated other possibilities for symptoms. The only reason I can suggest is that they are not well-informed, or perhaps they need to get notes for school or work...not for treatment surely? This could save some of the NHS budget, then if both healty and non-healthy populations can get fitter (including good nutrition), we can save a lot more. RHR and EHR/HRmax are useful tools for this, well done for helping put the message out, Sally, NHS next haha. S

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    3. Some patients are pushed into treatments in order to get benefits, or by work OTs or insurers. I wanted to give patients some-thing with which to counter the advice to push on with exercise regardless of symptoms that many people receive.

      I totally agree that NHS funding is not well spent in using GET & CBT. Hopefully NICE will come up for review soon. And that feels less like wishful thinking now that PACE is being so roundly challenged ;)

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  8. Can I post a link for heart rate blog here https://healthunlocked.com/ramsaysdisease

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  9. I know my CFS clinic do use heart rate in some way in the GET patients as I've had it suggested I see the physio to get advice before I'm put onto review appointments with my CBT, and they gave me a rough idea of what he can help me with, and they mentioned they use heart rate in some way to gauge the exercise intensity.

    I might take them up on it just to see what they have to say about it/ to see if they can help me with muscle strength around my hypermobile joints. So if I find out more, I will let you know.

    I go to sutton hospital which is part of Epsom and St. helier university hospital, and Dr Bansal heads up the department (though I have never seen him myself), so this may be why they are a bit more switched on with it!

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    1. This is encouraging Laura. Some ME specialists recommend 60% of calculated HRmax which is even more conservative than the NICE recommended 70% - but in my view 70% is better than no recommendations at all.

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