Scientific Studies Showing Serious Adverse Effects from GET?

[Woolie]

PS @joshualevy, I was going to ask if you had had any positive experiences with CBT/GET yourself, but I see from your profile page you're not actually an ME/CFS sufferer. Perhaps you have a friend or relative with the disease? Or a professional interest? A practitioner, perhaps? Or do you do research yourself into the disease?

Whatever the case, you're welcome on the forum.

 

[MeSci]

Ah yup, that's the one I forgot! Let's hear how CBT and GET can make my tonsils deflate

In fact, I think that for me the swelling increases the day after exertion, so it seems like a very useful visible sign/marker. For example - tiring day yesterday, very swollen neck this morning.

 

[Valentijn]

In fact, I think that for me the swelling increases the day after exertion, so it seems like a very useful visible sign/marker. For example - tiring day yesterday, very swollen neck this morning.

My armpit ones do that - painfully so. But my right tonsil was swollen almost constantly for a couple years. It stopped sometime after I started antibiotics

 

[Bob]

What they found was that lowering the fear led to lowering other symptoms. It was the change in fear levels they were reporting, not the "starting fear" levels. That's quite different. For one thing, it means that the question of justified vs. unjustified fear doesn't matter. What they are saying is that it doesn't matter how or why you are fearful, but if you lower the fear, you are likely to lower the symptoms.

Now there is still a counter argument: causality. Maybe the lowering of symptoms causes the lowering of fear, and not the other way around. However, they measured everything at the beginning, middle, and end of the trial, so it looks like the data shows the lower fear happening first. That would imply the causality goes from fear to other symptoms (not the reverse) but I'm going to re-read that part of the paper. It's not simple to understand the first time through.

Hi Joshua,
Actually they didn't demonstrate causality in the mediation paper, as per this line:
"Given the pattern of change in the mediators was similar to the pattern of change in the outcomes it is possible that the variables were affecting each other reciprocally..."

They don't make any fuss about that though, and only mention it briefly.

As we've discussed, the deterioration rates were eventually published, in a separate paper, and were no worse for CBT and GET than for SMC, but they were only published at 52 weeks, and not 12 or 24 weeks. It would be interesting to see the whole data.

Something to note about GET in the PACE trial is that it had an element of pacing, such that the therapists were instructed to adjust to a lower baseline if necessary, to avoid relapses. So really it wasn't GET, but it was pacing and GET. That seems like a fairly sensible approach to take, if they insist on forcing these empirically unhelpful interventions on people, and it seems to have avoided widespread carnage.