This is their description of pacing:
Another approach, activity pacing, is based on the envelope theory that claims, if expended energy levels are kept relatively constant, patients will slowly recover (Jason,
2008). Thus, the aims are to reduce avoidance behaviour, overexertion and symptom fluctuations through activity-rest cycling, energy conservation, and graded activity (Antcliff et al.,
2016).
Really? Patients recover? Avoidance behaviour? Graded activity?
And on recovery:
Thus, recovery can be understood as a personal process of acting upon own illness experiences to bring more wellness into life (Cassell,
2004). This process claims a person’s resources, efforts and engagement (Mattingly,
1998). In different ways, though, the purpose of NPTs is to facilitate such a process. The progress becomes “visible” through people’s story-telling about small and big events (turning points) that make a difference and enable a patient to proceed (Frank,
1995; Mattingly,
1998). Presently, this interpretation informed our analysis of qualitative data.
Yuck! What about recovery meaning being able to do the sort of normal things healthy people your age can do? And able to do them without ill effects? What about recovery meaning you actually feel well for the first time for x years?
That word salad sounds to me like blame the patient if they refuse to agree they have 'recovered' and patronise them by telling them small random improvements are 'recovery'.
They said they would include studies that used CCC, ICC or Fukuda criteria, but it looks like the only studies they found all used Fukuda. So although they defined ME/CFS at the start as including PEM, they actually only looked at studies using Fukuda that focuses on fatigue lists PEM as optional.
And as far as I can see the only study that looked at Pacing assessed effectiveness after 3 weeks! There was also a self management program that was no better than usual treatment controls on SF36PF after a year.
The section on patient's experiences is quite revealing I think:
A key feature was that the staff listened and understood (Chew-Graham et al.,
2011; Dennison et al.,
2010). Patients developed alliances with these therapists, who they found knowledgeable, inspiring, friendly, supportive and helpful (Picariello et al.,
2017). Their services were called a “security blanket” or “lifeboat” (Broughton et al.,
2017), a place where patients could talk openly without being judged.
Importance of overcoming own scepticism to engage in non-pharmacological therapies
If symptoms were not explained in physical terms, patients concluded that health professionals considered symptoms to be psychological (Chew-Graham et al.,
2011). They disliked it when psychological aspects were presented as facts (Chew-Graham et al.,
2011; McDermott et al.,
2011), and their engagement and compliance diminished (Chew-Graham et al.,
2011).
In particular, those reporting lack of improvement and attributing their ME/CFS exclusively to organic causes refused psychological explanations (Picariello et al., 2017). This hindered their attempts to balance life in relation to illness and meant that they were told to push themselves more than their body tolerated (McDermott et al.,
2011). By contrast, if health professionals presented physiological explanations that matched patients’ own illness models, it helped them to formulate their understandings more clearly, and to form alliances with health professionals (Chew-Graham et al.,
2011; Picariello et al.,
2017).
That reads to me as:
The treatments being offered don't actually work, but if you join in the game and like your therapist because she's nice to you, you will also go along with their nonsensical definition of recovery, and fill in the questionnaires 'correctly' so the therapists can go on pretending their treatments work.
On the other hand if you don't get better, it's because you refused to play the game and went on stubbornly insisting you have a physical illness, it's your fault.
Can anyone make any sense of the bit I've highlighted in bold? It seems to be saying people who think their ilness is physical will be made worse because they will be told to exercise???
Explanation and understanding of symptoms was fundamental to illness acceptance and beginning recovery work (Chew-Graham et al.,
2011; Pinxsterhuis et al.,
2015). Patients needed to accept that treatment was not curative, that improved coping would help (Pinxsterhuis et al.,
2015), and that life henceforth should be lived in a “slow lane” (Broughton et al.,
2017). NPTs could make patients more realistic, abandon the search for miracle cures (Pinxsterhuis et al.,
2015), and help them to focus on day-to-day goals for their lives (Broughton et al.,
2017).
What the hell does 'recovery work' mean in this context? I do wish they wouldn't pretend they can 'explain the symptoms' and that if we just accept we need to slow down, we will be on the road to recovery. If only.
Oh, and to cap it all they report that patients treated with LP reported
for some the Lightning Process led to immediate changes, including absence of symptoms and ability to resume former activities
Aren't they aware that this is what LP participants are told they have to say or they won't get better. How can they possibly take such stuff at face value? (they did report some negatives about LP too).
