Fatigue, Pacing and PEM management: lessons from ME/CFS – with Dr Ben Marsh
Dr Asad Khan talks to Dr Ben Marsh about his experience of ME/CFS over the last 4 years, and what lessons the Long COVID community can learn about activity management, fatigue and post exertional malaise.
0:00 Introduction
1:17 Life before ME
2:02 When did it change?
2:50 The first 12 months
3:45 When ME kicked in
5:30 The Symptoms
8:53 PEM and its invisibility
11:40 The label of ‘pyschosomatic’
19:34 Graded Exercise Therapy
26:29 NICE removal of GET
27:51 PEM / GET risk
29:26 Difficulty of pacing
33:30 Physiology of PEM
38:52 CBT as a treatment
41:12 Summary
Follow Dr Ben Marsh on twitter @bendymarsh
REFERENCES:
1) Nina Muirhead talk. https://me-pedia.org/wiki/Nina_Muirhead8 min – mitochondrial energy score 13 min – Quality of life & disease burden 15min – PEM: mental arithmetic
2) POTS & ME. Using invasive CPET. http://endmecfs.mgh.harvard.edu/icpet/
3) Dialogues MECFS films on science behind PEM and Pacing and Graded Exercise therapy https://www.dialogues-mecfs.co.uk/vid…
4) Patients account of symptoms, Dialogues for ME, including videos with ME patients discussing: – reduced function – disease start – PEM – Cognitive impairment – sleep dysfunction – orthostatic intolerance – Pain – hypersensitivity https://www.dialogues-mecfs.co.uk/fil…
5) Kindlon T (2011) Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/ chronic fatigue syndrome. Bulletin of the IACFS/ME 192: 59–111.
“Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.” https://www.researchgate.net/publicat…
6) Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology. 2019;24(10):1318-1333. doi:10.1177/1359105317726152
Table 4. Summary of key symptom change data from ME/CFS patient surveys (2000–2015). Deterioration (slightly or much worse) CBT 17% GET 54% https://www.dropbox.com/s/zn49o3rsukb…
