Short exploration of the problems with UK NICE guidelines that recommend Graded Exercise Therapy (GET) for myalgic encephalomyelitis. (Sept 2015)

1. M.E. patients &
the problem with
NICE advice on
EXERCISE
The way I see it.
by Sally Burch - http://sallyjustme.blogspot.co.uk

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

3. CG53: on
Graded Exercise Therapy (GET):
But there are problems . . .

4. Graded Exercise Therapy:
“planned increases”
My comment:
Some therapists push patients to adhere to
these “increases” despite symptom
exacerbation.

5. Graded Exercise Therapy:
My comment:
The whole emphasis of GET appears to assume
that increase is possible, and takes little heed of
potential harms.
Again mention of increase!

6. Graded Exercise Therapy:
My comment:
Aerobic exercise has been demonstrated to be
harmful to ME patients.*
*http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short
“aerobic exercise”

7. Graded Exercise Therapy:
The word “EXERCISE” is a big problem!
General NHS guidance on exercise says:
“…you need to be moving quick enough to
raise your heart rate, breathe faster and
feel warmer.”*
*http://www.nhs.uk/Livewell/fitness/Pages/whybeactive.aspx

8. Graded Exercise Therapy:
I have explored the use of the word
“exercise” further in my blog post:
Why NOT exercise?
http://sallyjustme.blogspot.co.uk/2014/05/WhyNOTexercise.html

9. Graded Exercise Therapy:
Some NICE guidance sounds sensible:
Yet 74% of patients who have done
Graded Exercise Therapy also report
worsening symptoms!*
*ME Association Survey:
http://www.meassociation.org.uk/2015/05/23959/

10. Graded Exercise Therapy:
On a positive note - NICE advice on heart rate
monitoring seems sensible:
My Comment:
However this strategy is not often suggested
to patients, by their doctors.*
*Personal experience, and anecdotal stories from online ME community.

11. Graded Exercise Therapy:
I think the premise of GET is faulty!
If energy were money:
GET is tackling the wrong side of the equation.
Patients need treatment & recovery before GET.

12. Please!
QuestiontheNICEguidelineforME!
Professor Baker, the Directorof NICE does:
In June2014 he said of the 2007 Guideline:
“The Guideline failed toaddress thereal issues
in ME/CFS”*
*http://www.forward-me.org.uk/25th%20June%202014.htm

13. Please also query:
- the reasons that research funding for ME
seems to end up directed towards
psychiatry . . .
. . . surely it is now time to fund biomedical
researchto find the energetic problems at
the root of ME?

14. 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.
Followupmaterialonnext3slides.

15. More Information:
The following guidelines have been produced jointly by ME researchers:
International Consensus Criteria (ICC)
2012
http://irishmecfs.org/Myalgic%20Encephalomyelitis%2
0International%20Consensus%20Primer-2012-11-
24.pdf
Canadian Consensus Criteria (CCC)
2003
http://www.investinme.org/Documents/PDFdocuments
/Canadian_ME_Overview_A4.pdf

16. These two papers provide useful material about the dangers of GET:
Tom Kindlon (2011)
“Reporting of Harms Associated with Graded Exercise Therapy and Cognitive
Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome”
http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
Bulletin of the IACFS/ME. 2011;19(2): 59-111. © 2011 IACFS/ME
Frank Twisk & Michael Maes (2009):
“A review on cognitive behavorial therapy (CBT) and graded exercise therapy
(GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS):
CBT/GET is not only ineffective and not evidence-based, but also potentially
harmful for many patients with ME/CFS”
https://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf
Neuroendocrinology Letters Volume 30 No. 3 2009

17. This slide series was produced in response to a question about NICE that I
received after my presentation to the QUB ePatients conference.
The above 22 minute presentation can be viewed on my blog: Just ME
or on YouTube: https://youtu.be/DJBd5wEKcpU
Active links from this slide series available at:
http://sallyjustme.blogspot.com/2015/09/graded-exercise-therapy-no-thank-you.html
END.