Light exercise - it's one of the worst treatments but it may be helping a small subset of patients?!?!

  • Exercise-related treatments were solidly in last place in the survey data. The other treatments weren’t close to being as bad.
  • Low-severity patients rate exercise less poorly; this seems to align with people saying that they are better at tolerating exercise when they are doing well and not flaring.
  • Survey data is not completely reliable. While 3 people may have recovered with the help of light exercise, the evidence is far from definitive. HOWEVER… if we believe patients… then maybe we should consider the possibility that a small subset of patients might benefit from light exercise.

Let’s start with the data. Exercise was rated poorly… really poorly.

In the diagram below, the magenta arrows point towards exericse-related treatments: pacing strategies (#1 by a good margin), intense exercise (with sweating), light exercise (no sweating), and graded exercise therapy. I did not stick an arrow onto “avoiding exercise” but it’s in the top 10.

You can clearly see that exercise is an outlier. It was off-the-charts bad.

Data on what helped people recover

There’s another way of slicing the data. The survey collected data on how people were doing currently (based on 3 things: ability to work, ability to walk, and self-reported suffering from symptoms). If their current severity is really low, then the person is basically mostly recovered.

If the person is recovered AND they rated a treatment highly, then it’s very possible that the treatment helped them recover. So here’s what the data looks like for exercise-related treatments:

‘Avoiding exercise’ and ‘pacing strategies’ involve limiting exercise… they had 7 hits. Light exercise only has 3 hits. So… not really looking that great for light exercise when avoiding it seems to helping more than doing light exercise.

The column on the very right shows the data adjusted for popularity. It’s the percentage of people who reported BOTH of the following:

  • Being mostly recovered. This is based entirely on having very low severity currently - able to work without accommodations, able to walk more than 5 minutes, and low or no suffering from symptoms.
  • They rated that particular treatment highly, saying that it lead to significant improvement.

Of the people who tried light exercise, it’s a very low 1.2% who reported both. The best treatments are around 4% or higher. So… light exercise isn’t doing that well there.

There may be a background percentage of people reporting both if you believe that a few survey participants are unreliable when it comes to reporting their outcomes. For evidence of that and info on the ‘everything works’ phenomenon, see slide 6 here.

An argument for light exercise

It might just be a small subset of people that benefit from exercise. That would be the low-severity people who don’t experience post-exertional malaise at all.

Among that smaller group, light exercise might have statistics supporting its benefit. (In general the top treatments don’t work for most people so all of the response rates are low.)

ME/CFS patients

The gray bars below represent the 24 out of 31 ME/CFS patients who reported results for light exercise (no sweating). You can see that several of them reported some level of improvement from light exercise.

While the ME/CFS advocacy groups are constantly campaigning against graded exercise therapy (GET)*, perhaps the truth is more complicated. (*GET from medical ‘professonals’ may not be the same GET that patients reported on the survey as some patients may define GET differently.) Some patients are saying that they saw improvement from light exercise.

I don’t think we’ll figure out the truth from survey data

If there is a signal it’s weak. Ideally there would be data from some type of human trial where one group does exercise and another group does something else (e.g. meditation, aggressive rest, whatever).

There’s certainly a paradox here as 6 people who (mostly) recovered are saying that avoiding exercise really helped while 3 people are saying that light exercise really helped. Maybe both groups are right. We need better research to figure out what’s happening here.