Can physical assessment techniques aid diagnosis in people with CFS/ME? A diagnostic accuracy study, 2017, Perrin et al

Yes it is a shame about the recruitment method. On the plus side, they recruited from two hospital clinics (good) as well as from the local support groups and by social media and posters.

I don't agree with you about the patients being more likely to have sore lymph nodes (and, by the way, those with swollen nodes were excluded).

Would a pwME who heard about this study really be more likely to volunteer if they have sore lymph nodes? I consulted an osteopath for actual treatment because the Perrin Technique came up quite highly on an MEA survey of treatments. I never gave any thought to my lymph nodes (which for the record are rarely tender and when they are, its my armpits and groin that are sore - I'm not aware of the others until they are pressed).

Yes, I'd like to have seen another disease incorporated into this study.

To be fair, Perrin hasn't made such a claim.

 

It's such a shame that the Science Media Centre has lost all credibility. Now it's open season again.

 

He has, in the media coverage:

 

Sorry I missed that. I haven't read the coverage properly. I'm trying to make my way through the study paper.

That's concerning. And it's also bit odd because the practitioners don't diagnose without a full history, which takes considerably longer than your average GP appointment.

 

No worries, yeah it looks to me like he's just promoting his technique but the findings don't justify it. I find his other comment in the media even more concerning though, the one about treatment, because that isn't even what this study is looking at. This is serious because patients have to part with their own money for this treatment and seeing a reputable media outlet publishing these claims in association with a related paper published in a journal that they don't necessarily understand or even know how to access is likely to misinform people. Where is the evidence for the treatment working? That ME is due to poisons in the brain?

edit: those questions aren't aimed at you Scarecrow, or anyone else, they're just rhetorical

 

I can't disagree with any of that. It does look bad.

I talked to my own Perrin practitioner about this. It was the same year of the first PACE paper. At that time, they weren't sure how you could design a trial when you cannot blind the treatment and you have to reply on subjective reports. (Hey, that sounds like the same flaw identified by someone we know!). I don't know if they have made any progress since then but I wonder if Perrin thinks that if he can get the NHS to take him seriously, then it might make it easier to get funding for a treatment trial.

I used the word 'arcane' the other day referring to osteopathy generally. There were elements of the PT treatment that I found quite bizarre (and it was the 'head' section) but it was relaxing and I just went with it. I've read someone else's account where they told their therapist not to bother with that part because they thought it was stupid since there was no evidence of the lymphatic system in the skull. "Poisons in the brain"? I dunno but since my treatment, we've seen the Kipnis brain lymphatics paper.

OT: Perrin is a very approachable man. Like @John Mac, I went to one of his talks but, in my case, long after I'd started treatment. I emailed him a while ago when the brain lymphatics paper was published. He wrote back and thanked me. There was a suggestion elsewhere on the forum that we invite scientists here for a Q&A session. I'd be happy to ask Perrin if we decide to do anything like that. Put questions to him directly if he'll give us the opportunity. Don't assume the worst possible motives at all possible times.

 

A few sections from the paper that touches on some of the points raised above.

 

Hey, your p.s. came too late! I couldn't see while I was typing my reply.

 

Raymond Perrin is rather overstating the reality of the study, since no standard diagnostic process was used as a comparison:

And this sounds like outright bullshit with absolutely no evidence supporting it:

He needs to do some real research and prove that 1) there are "poisons" affecting the brains of ME patients, 2) that the sympathetic nervous system is the root cause of ME, and 3) that a nice massage will remove poisons, affect the sympathetic nervous system, and "restore" health. I don't doubt that he's a nice guy, and might even have good intention, but the approach he's taking is pure quackery and has no scientific basis.

And the sad thing is that it's still miles better than the "evidence based" NHS treatments recommended for ME/CFS. At least you get a nice massage and no psychological abuse

 

Indeed and that's the initial attraction of it.

It's a lot more than can be said for just about any doctor who routinely prescribes pwME anything stronger than a pain killer or a sleeping tablet.

 

I got some free reflexology for a while. Probably the most useful medical intervention I've ever had for CFS, just because it was quite a pleasant thing to do.

[edit: In no way am I saying that I think providing reflexology would be a good use of resources!]

 

given my personal space issues, I think I would prefer not to receive a free massage given by some strange person groping my nodes.

 

Were you given the treatment? Did it really Help? Has anyone else been helped?

 

No I wasn't given any treatment it was just a physical examination from a Perrin practitioner, an NHS physiotherapist trained in the Perrin examination and a doctor. All in all it took about 1 hour.

 

I have followed this thread with the degree of scepticism which would be expected. (Sometimes I am sceptical about scepticism.) But having an enquiring disposition I thought that the least one should do is give "Perrin's Point" a prod. Totally unexpectedly it was slightly tender in a way which the corresponding position on the other side was not.

Now I just need to find some healthy controls, and people with similar but different illness. I may be absent for 2 years....with remission....for good behaviour.

But I remain sceptical about the "treatment".

 

Nothing wrong with a bit of open-minded scepticism.

 

My main concern is that he seems to be going about it backwards, as the BPS practitioners do. He starts with the premise that his particular specialty is the cure for multiple diseases, and the explanation of pathology to support that cure is then invented with little or no evidence.

Why is there no evidence of these toxins existing? Which toxins are they supposed to be? Where is the evidence that these toxins "overstrain" the sympathetic nervous system? Where is the evidence that the sympathetic nervous system is "overstrained"? WTF does "overstraining" the sympathetic nervous system even mean? Where is the evidence that the lymph nodes are blocked from normal drainage?

The organizational similarities between LP and the Perrin Technique are a bit eerie. Aside from the Perrin Technique being based on largely biological causation (but also emotional), they're organized and marketed in nearly identical manners. A 430 euro weekend course is all that's needed to become a Perrin practitioner - though the applicant at least has to have a background in osteopathy, chiropractics, or physiotherapy. That's a slight improvement over the apparent LP requirement of being susceptible enough to believe they were cured by LP in the past.

And I think Perrin's actual interest in patient accounts is limited to a similar extent as it is in the BPS framework. Why does he call it CFS/ME like they do, when it pisses off most ME patients? Why describe ME/CFS as "a clinically defined condition characterized by severe disabling fatigue and a combination of symptoms including disturbance in concentration and loss of short-term memory, disturbed sleep, and musculoskeletal pain."? Much like the BPS practice, he's framing it in terms which are most relevant to his cure, and which severely downplay the overwhelming loss of physical functionality which patients experience.

My general impression is that Perrin's explanation of causation and basis for treatment is as flimsy as the BPS basis for CBT/GET, combined with the financially exploitative approach of Lightning Process or similar. The Perrin Technique is just more palatable to patients because we aren't being explicitly or implicitly told that it's our fault that we're sick.

 

In Germany (well, my experience), these tests are only performed by neurologists. Don't know exactly why.