Will psychotherapists corrupt pacing?

I worry about the possibility that now that the biomedical view of ME/CFS appears to be slowly winning, psychotherapists who previously offered CBT/GET will reposition themselves to offer pacing as a form of psychotherapy. The long term result of that could be that this pacing as psychotherapy is corrupted into something that no longer prioritizes the interests and needs of patients but the interests and needs of psychotherapists.

It's in the interest of psychotherapists to schedule many sessions with patients. Therefore pacing as psychotherapy could gradually turn into a needlessly complex approach where therapists allegedly have a necessary role.

It's in the interest of psychotherapists to create allegedly superior variants of pacing to set themselves apart, and to hype this new form of pacing therapy.

If there was a proper regulation and good quality control in studies, and exaggerated false claims about a therapy's effectivenss were not rewarded, then there would not be a problem. But it would be naive to believe that anything substantial has changed in this regard. So there seems to be a good reason to be pessimistic and expect the corruption of pacing over time.

In its worst scenario, pacing could become a new justification for blaming patients for failing to cure themselves, prevent PEM, or achieve whatever goals society wants us to achieve.

 

Thank you.

As you describe, there could be several versions of pacing, with psychotherapists vying to be top dog with their version.

IME, pacing cannot be other than individually regulated. To have some "authority"who knows boom all about ME superimpose a pacing template over one's life is not feasible.

 

Further to being blamed if pacing doesn't improve one's health, it may keep one from "falling off a cliff", into more severe ME, but IMHO, it does not improve health status. That is, for example, move a moderately affected pwME to mildly affected.

 

It could be seen as reasonable if the patients were depicted as having some defect in their ability to judge what is appropriate and good, requiring external authorities to set activity levels and mindset. We have seen that before with CBT/GET.

It seems to me that the incentives to create exploitative therapies like CBT/GET, and systemic defects in healthcare and research that permit this haven't really changed. The attitudes towards ME/CFS seem to have improved though.

 

If so, then some effort will need to be made to emphasize that the patient is the only one who can judge their state, and thus the effectiveness of their pacing. Of course, psychiatrists would try to counter that with poor-quality studies that are made to show how much better patients are with their help. It's just another fight, hurting the people who are least able to fight.

 

Yes, it would be easy to just continue with the message that BPS practitioners know best. Especially where contested diseases are concerned.

I hope attitudes towards ME have improved. I know some governments have posted guidelines and other biomedical about ME. But, I don't know if this has trickled down to doctors' offices, and it hasn't changed public attitudes as far as I have seen

It will still be a long road, but I hope we get there.

 

I think at present the biggest danger is ‘pacing up’. The unspoken model of rehabilitation is to establish a base line of reliable achievement for the problematic activity or for a sub component of that activity, then push against the limits, and as long as there seems to be improvement to keep on pushing. Under this model the ideal patient is one that keeps pushing themselves.

Whether because of inaccurate initial diagnosis or pure chance, particularly with patients in the early stages of post viral conditions, for a small number this may seem to work, reinforcing the belief in this implicit model.

However with ME/CFS and those with Long Covid that meet the diagnostic criteria of ME/CFS, ie display PEM, there are substantial dangers to this approach. People undertaking pacing successfully may experience an apparent improvement as they reduce or even eliminate the negative consequences of PEM, this may be purely a subjective improvement, especially if as often happens when undertaking an intervention lots of other things are dropped, ie the apparent improvement comes from reducing overall activity. Alternatively for some, substantially avoiding PEM may mean there is an initial increase in average activity levels but this is likely still to be within ceiling. Mistaking this for improvement in the underlying condition may/is likely to result in doing too much.

It is hard for health professionals, and I recognise this in myself as a former health professional, to accept that for ME the best goal may be to reduce overall activity and to maintain an average level of activity that is well below the maximum activity ceiling. Also to recognise that for many this is only achievable by increasing support for daily living activities.

Having said that for some people it may be that psychotherapy can be a useful support in coming to terms with doing less and setting personal goals that are achievable within activity levels below the individual’s safe activity ceiling.

The first challenge is to get psychotherapists and health professionals in general to understand the basics of PEM and that ME is not such that activity or exercise can treat the underlying condition.

 

I have trouble understanding why psychotherapists would get involved with pacing at all. I would have thought OTs or physios would be more qualified to help with activity management if someone is not capable of working it out for themselves.
But then I haven't followed this topic much and maybe I believe the majority of people are more sensible and practical than the parasitic psych industry would have us believe.

 

I think that there's a danger that any medical professionals, however well intentioned, will have a negative impact on how 'pacing' is understood if they start to make a career from providing 'pacing'. It seems that medical culture makes it really difficult to make a virtue of leaving patients to decide for themselves how to live their own lives.