In Episode 3 of our expert interviews series, 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.
Follow Dr Ben Marsh on twitter @bendymarsh
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
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/videos/
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/films/patients-experiences/
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/publication/216572185_Reporting_of_Harms_Associated_with_Graded_Exercise_Therapy_and_Cognitive_Behavioural_Therapy_in_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome
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/zn49o3rsukbuvkv/Geraghty%20ME-CFS%20patients%27%20reports%20of%20symptom%20changes%20following%20CBT%2C%20GET%20and%20pacing%20treatments.pdf?dl=0