EMERGE Australia Recovery Position Statement

[Dolphin]

[I wasn't sure which forum to post this in]

EMERGE Australia Recovery Position Statement

https://www.emerge.org.au/recovery-position-statement/

Start of pdf:

Statement

The general consensus is that full recovery from ME/CFS is not common. However, the research into recovery is plagued by methodological issues, making clear conclusions difficult. There is an urgent need for high-quality, longitudinal research, utilising objective measures of functioning, to determine the long-term prognosis and likelihood of recovery from ME/CFS.

Long-term prognosis for people living with ME/CFS is difficult to predict. While some living with the illness may improve over time, the general consensus from ME/CFS experts is that full recovery from ME/CFS (a return to pre-illness functioning) is not common[1],[2]. Prognosis is better for young people (children and adolescents) and those with mild forms of the illness than it is for those middle-aged and older, and for those who are more severely unwell[1],[3].

https://twitter.com/user/status/1703793680371351815

 

[Hutan]

This is a good point:

Subjective ratings of improvement, or measures of symptom reduction, don’t differentiate between improvement in health and adaptation to the illness. Many patients learn to live within their energy limits over time (so as to avoid triggering post-exertional malaise and making their condition worse), which may make them less symptomatic, but not necessarily any more functional4,5. For this reason, using subjective ratings of symptoms is misleading as a measure of recovery. Recovery from ME/CFS must be measured using objective measures, such as actimeters or return to work rates5.

I think this document is good as far as it goes. However, it does not address recovery in the first two years of illness. We know that many people who would meet ME/CFS criteria other than time requirements do recover before the 4 or 6 months required for diagnosis. We know that many people who do meet ME/CFS criteria recover after those arbitrary time requirements. It's possible that they do not recover fully, but there are certainly recoveries where the person feel as healthy as they were before the illness.

If we ignore the recoveries in the early months, we leave the door wide open for pedlars of pseudoscience of all sorts to claim that they have been responsible when people regain health.

 

[Dolphin]

My memory is not as good as it used to be, post Covid. It doesn’t help that I’m not reading many full papers these days. There was a study that came out in the last 6-12 months that had some new evidence that young people were either more likely to improve or recover: can anyone remember what I might be thinking of?