Article: “I was ready to give up on my life with ME ... but Perrin treatment miraculously changed everything”

Not a recommendation. More an info-mercial for the Perrin treatment than anything else, in my opinion.

https://www.blackpoolgazette.co.uk/...ent-miraculously-changed-everything-1-8892153

 

I’m not hostile towards the Perrin treatment, and don’t doubt Ray Perrin’s good intentions. But, personally, I would not continue with a treatment that made me go rapidly down hill for months on end with an uncertain outcome at the end of it. The 24hr paralysis and nervous system shock, in the case of this patient, sounds very worrying also.

 

Yes, it's normal to feel worse for a few days after treatment. It felt very much like PEM to me with the increased heart rate to go with it. Why that should lead to an improvement over time is a mystery.

I agree that it stretches credibility that somebody would persevere for months.

 

Just another reason why we can't get through to people how sick we are and that nothing works and there are a lot of dangerous therapies for ME/CFS out there including GET/CBT and Lightning Process.

 

I do. The research into his stuff is pretty poor, and one of the reviewers was his business associate, with no conflicts of interest listed. I didn't have a strong opinion until seeing that, but now he looks a simple scam.

 

I find these likely coincidental spontaneous improvements attributed to unproven and likely sham treatment stories very annoying

 

I have a theory that when someone is starting to feel a little better they look for potential treatments, try things like this and continue to improve. When it is nothing to do with what is being tried and the improvement started prior to testing the treatment.

Which is of course why we need trials with proper selection.

 

While there may be something in that, it doesn't tie in with my own experience. I was heading downhill fast and would have been in danger of losing my job if I'd started having multiple absences.

It is of course possible that the reversal was spontaneous but I don't believe so. I improved to a certain level but no further, so I stopped treatment. Six months later I was significantly worse again so went back and once again improved.

I'm no longer seeing my osteopath but do feel the need of it again. If personal circumstances allow, I'll be going back next year. If I improve again but not before, it'll be a clincher for me.

Agree that we need trials but I'm not certain we'd be satisfied with the results unless they are conducted independently.