This document discusses issues with the UK NICE guidelines for Myalgic Encephalomyelitis (ME) regarding graded exercise therapy (GET). It notes that an ME Association survey found 74% of patients reported worsening symptoms from GET. The guidelines recommend exercising at 50-70% of maximum heart rate, but doing daily activities often exceeds this for ME patients. Using a heart rate monitor, the author found that activities like showering, writing emails, or making a drink increased their heart rate beyond the recommended zone. While NICE suggests heart rate monitoring, many doctors do not advise patients to use monitors. Properly adhering to heart rate limits with monitoring shows the significant differences between what exercise means for healthy and ME patients.

1. Heart Rate Monitoring
&
NICE Guideline for ME
Is heart rate monitoring
advice often ignored?
The way I see it.
by Sally Burch - http://sallyjustme.blogspot.co.uk

2. The Dilemma:
Graded Exercise Therapy (GET)
- is recommended by NICE
- but patients complain that
symptoms get worse

3. An ME Association Survey shows:
74% of
patients who
have done
GET report
worsening
symptoms!*
*ME Association
Survey:
http://www.measso
ciation.org.uk/2015/
05/23959/

4. The ME Association
hasnowcalledfor
GradedExerciseTherapy(GET)
toberemovedfrom
NICEguidelines
http://www.meassociation.org.uk/2015/05/23959/

5. Unfortunately NICE guidelines are
on the static list
However . . .
there is oneNICE detail that
may helppatients until
guidelines are updated.

6. Heart Rate Monitors
are recommended by NICE
Yet it seems few medical
professionals suggest HR
monitors to patients.

7. NICE Guidelines [CG53]
canbefoundhere:
Published date: August 2007
http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations

8. NICE suggests ME patients
exercise at
50 -70%
of maximumheart rate
andthisonlyaftersucceedingwith
“low-intensity”exercise.

9. Heart Rate monitoring
is important
because“exercise”withME
looks verydifferent onceadheringto
heart rate limits. . .

10. Calculating Maximum Heart Rate
220 minusage in years*
For me this is
220 – 52 =
168 bpm(beats per minute)
*UnabletofindNICEguidanceoncalculatingMaxHR,Iusedthiswidelyappliedformula.

11. Calculating the ME Exercise Zone
50 – 70% of max HR
Usingmy max HR of 168 bpm
my exercisingrangewill be:
84 - 118 bpm

12. For Healthy Individuals
exercise at
50 – 70% of max HR
means a brisk walk or gentle jog
http://www.howtobefit.com/five-heart-rate-zones.htm

13. Here are the Exercise Zones:
50–70%includesthelowesttwobands
Exercise zones: Fox and Haskell from here

14. A doctorI saw early inmy illness told
me to take 3 short briskwalks a day.
Perhaps she was thinkingof the NICE
50 – 70%recommendation. . .
without realisinghowdifferent things
are for ME patients?

15. I now use a HR monitor
And here are some typical heart rates for me:
Activity Typical HR
Reached
Typical HR
as % of my max HR
Writing an email 90 54% (Warm-Up)
Making a hot drink 115 68% (Fat burn)
Walking to bathroom 125 74% (Cardio)
Getting dressed 130 77% (Cardio)
Brushing my teeth 130 77% (Cardio)
Taking a seated shower 140 84% (Hard-core)
Some days are better, some worse, but these
numbers are quite different to those of a healthy
individual.

16. I use a shower stool,
but showeringstill takes my HR above
the 50 – 70%rangerecommended
by NICE.
Yet ask any healthy person if
showering counts as “exercise” and
their answer would be NO!

17. Perhaps the word
“exercise” is misleading
when used in the context of ME

18. So what can be done?
NICEadvisesthatexerciseshouldbedone
“using a heart rate monitor”
This issomethingmedicalprofessionalsinvolved
withMEallneedtoknowabout,andtoapply.

19. So let’s spread the word:
“NICE recommends
Heart Rate Monitors for ME”
Hopefullythis waypatients can avoid
harmful un-monitoredexercise advice.

20. It is my opinion:
that ME patients, rather than
needing more exercise
. . . actually need help to adjust
daily activities to stay within
safe heart rate zones.

21. I also think that NICE guidelines
are now very outdated and
long overdue for review.

22. Thank you
SallyBurch - MEpatient,formerbiologylecturer.BScPGCE
Icanbecontactedat salkeela@live.co.uk
Itweetusing @keelatoo
Myblogisfoundat http://sallyjustme.blogspot.co.uk/
IamalsoaTrusteeforthecharity Hope4ME&FibroNI
Viewsexpressedaremyown,andarenot tobe takenasmedicaladvice.
Someusefullinksfollow.

23. Some Links:
Blog Post to accompany this Slide Share:
Heart Rate Monitoring & NICE Guideline for ME
Previous Slide Share written to highlight the problems faced by ME patients:
ME Patients and the problem with NICE advice on exercise
Other Heart Rate monitoring posts on Just ME:
Rhythm+ and Endomondo: HR monitoring for ME Aug 2014
A few notes on using a HR Monitor for Pacing Feb 2014
Other useful posts related to exercise and ME:
Pacing By Numbers by Bruce Campbell
Exercise Testing and Using a Heart Rate Monitor by Jennifer Spotila

24. Post Script:
Following a comment on my blog, 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.