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M.E. patients & the problem with NICE advice on exercise

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M.E. patients & the problem with NICE advice on exercise

  1. 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. 2. NICE Guidelines [CG53] Published date: August 2007 http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
  3. 3. CG53: on Graded Exercise Therapy (GET): But there are problems . . .
  4. 4. Graded Exercise Therapy: “planned increases” My comment: Some therapists push patients to adhere to these “increases” despite symptom exacerbation.
  5. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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.

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