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

The one used by the Perrin practitioners would falsely diagnose 15% of the healthy population with CFS, and probably a much larger percentage of unhealthy people who don't have CFS. Diagnostically, it has no value on its own, and the methodology of the study wasn't sufficient to draw any conclusions at all from it.

 

It had plenty of value for me.
It is the only time someone has found physical abnormalities associated with ME

 

There are lots of other, non-Perrin, CFS doctors who check for an association with sore lymph nodes. The trouble here is that it seems the Perrin techniques was being compared with something so useless that most patients would be able to come up with a superior physical exam themselves.

I take your point about not wanting the throw the baby out with the bathwater, but the results from this study of the Perrin technique would seem to indicate a huge amount of bath water sloshing around in there.

Comparing different ways of diagnosing CFS can be really difficult, and we don't have some wonderful gold standard to compare the others to, but it does seem like there are real problems with this study and with the Perrin technique. Maybe people are being particularly critical because of other things... but this sort of coverage is annoying:

https://news.sky.com/story/massage-...agnosis-of-chronic-fatigue-illnesses-11125556

Thanks for sharing your experience of being in the trial, and letting us know that you found parts of it valuable. - also 'welcome to the forum John'.

 

Can you tell us how you heard about the study. Where you recruited by a Perrin practitioner? Is there any possibility that the practitioners in the study could identify you?

Do you mean that the inexperienced AHP was an NHS physio who had been trained in the technique for this study? It's a bit concerning that you were allowed to prompt them.

Full disclosure: I've also been to a Perrin practitioner and my trend reversed from gradually worsening to slowly improving to a plateau. Of course, I put that down to the therapy but perhaps it was coincidental. [Edited so as not to give the impression that John Mac had seen a practitioner prior to the study.]

 

I've only read the abstract but here are some thoughts, some of which others have probably made already.

Seems odd to recruit from CFS/ME support groups to me. I expect this impacts the suitability of the study, not sure, maybe someone can enlighten me.

The study is biased because patients volunteer and are much more likely to do so if they may benefit. I have ME/CFS but don't have swollen lymph nodes for instance. Bet it's harder to identify me with these techniques than someone who has swollen lymph nodes all the time.

Why are the two Perrin practitioners allied, while the physician conducting neurological and rheumatological assessment is on their own? I don't know if I understand this. At the least it means the time expended is not the 20 minutes claimed, it's 40 minutes in total. Or have I misunderstood what the allied bit even means?

Does the physician actually have qualifications, skills, experience in both rheumatology and neurology or are they playing at these specialties for the day?

Is this how the original participants were all diagnosed? If not then what's the point, surely this study is just as much a test of the alternative diagnostic technique as well? That seems to be what they're saying in the results, but if that's the case then why would you design a study that way - is it just to make the Perrin technique look better in comparison?

No disease control group makes this pointless. How do we know they wouldn't pick out just as many people who's bodies were diseased with say MS or diabetes? Perhaps sedentary controls (not even diseased) too, Maybe all would get selected as having ME/CFS had they been studied? Maybe more than those with ME even.

The big problem I have with this is not that physical sighs may be worth looking at in addition to current diagnostic methods (although I think the standards of research here are not good enough to justify the conclusions) it's the fact that this isn't solely being promoted as a diagnostic technique, it's being promoted as a treatment, and on the basis of this idea of toxins in the lymphatic system which benefit from being drained away, which is not proven. This study does not even attempt to look at that question. Inevitably the media promote the treatment.

I haven't read the whole paper so maybe someone else can answer this questions for me: Knowing that this is being sold as a treatment to desperate patients, what does the paper say to warn that this study must not be taken to prove the technique is an effective treatment?

 

Thanks for posting John. I agree that physical examinations like this could potentially have some use. The two issues I have boil down to 1. the potential of the treatment being promoted off the back of a study that doesn't even look at the treatment itself, only it's diagnostic utility and 2. the flaws with the methodology of the study, whether they are reliable and what this study actually tells us, if anything.

Did your knowing you had sore lymph nodes influence your initial interest in the technique or your decision to participate in the study? The reason I ask is because I suspect the study design makes that much more likely; that volunteers are more likely to know they have lymph node issues going on already. That would mean that the study isn't reflective of a typical heterogeneous ME/CFS population. The result of that is that the technique looks much more effective in this study than it really is.

edit: I would add that even if I'm right about those flaws that it wouldn't say anything about the effectiveness of the technique as a treatment, only whether it's a valid diagnostic technique as that's all the paper is about.

 

I've had both sets of these tests done on me for other reasons since I've been diagnosed with ME. Both sets of tests were found to be normal. This methodology virtually guarantees that the physician is going to diagnose less ME than they would under more typical diagnostic methods (symptoms, history and exclusion).

 

The Perrin practitioners made their examination separately.

https://www.healthcareers.nhs.uk/ex...ionals/studying-be-allied-health-professional

 

I think I may heard it from South Sefton ME support group but not 100% sure.
I wasn't recruited by any Perrin Practicioner I had no contact with them previously other than attending a lecture in 2010/11 b Dr Perrin. So I don't think the Practioner could have known who I was unless they were breaking the rules somehow. Though I did overhear while I was waiting to be seen the two administrators discussing the fact that one woman had turned up in a wheelchair and what they should do about that in terms of blinding.

Yes I think that was what she was though it may be stretching it to say she was trained in the technique. I think she was just looking for sore lymph nodes, maybe more?
Yes I suppose that I should have kept silent apart from yes and no but it was frustrating she wasn't able to find the sore lymph nodes straight away like the first woman. However she did find them in the same spot.

I knew I had 1 sore lymph node (in the chest) but didn't know about the other 4.
What interested me was I could get a free examination by a Perrin practitioner.

 

ok so "allied health professional" is a thing. Thanks, got it.

 

As far as I can see, absolutely nothing but the paper is about diagnosis not treatment.

 

Ouch! I hope what they did was exclude her as the criteria indicated they should.

 

According to the study the experienced AHP has worked with ME/CFS before. The inexperienced has not. I can't see that it says if the clinician has or hasn't. The clinician did have experience too.

The problem is that the clinician is being asked to do something unusual to their likely experience (symptoms, history, other disease exclusion) which limits the utility of their experience. It's a bit like typing with one hand behind your back.

And I still can't get away from the problem that the AHPs appear to have this advantage of seeing self-selecting patients who likely have higher than typical incidence of swollen/sore lymph nodes compared to a more reflective population of ME/CFS patients.

My suspicion is that current methods would outperform these techniques if you tested against a typical method, and perhaps much much better if the technique had to pick out those with ME/CFS from other disease states which is what it'd have to do in a real clinical setting. So I just can't see any value in this, certainly not enough to claim that all doctors in the world could benefit from this diagnostic technique.

 

Thanks, I even read that bit but missed it! Too many toxins floating around

If this person has worked in an ME/CFS clinic it would seem unlikely to me that they had any actual experience or qualifications in either rhematology or neurology. The paper doesn't say they have.

 

yes this completely.

 

I agree that they would be unlikely to be specialists in those areas but the rheumatology and neurology examinations that you listed above are pretty standard doctoring tests. I dare say that even most psychiatrists wouldn't have too much trouble.

 

Sorry so much has already happened on the thread that I forgot I wanted to reply to this by way of Trish:

Also, in their normal practice the AHPs trained in the Perrin Technique would take an extensive verbal history in addition to the physical examination.

So in this study, the AHPs and the doctor were all prevented from taking the history that would be normal in their clinic or practise but they were still allowed to do their routine physical examination.

 

Having read the whole thing I don't think this is methodologically as bad as SMILE, but that's not huge praise because it still falls short in so many areas. I think some attempt has been made to try and avoid certain shortcomings but too many remain. It's not ethically as bad as SMILE either (children) but I'm uncomfortable with this being a commercially unproven treatment that's getting national media coverage despite the fact the study tells us nothing about the treatment at all, along with an anecdotal report in the media that the treatment can transform a person's life.

Sky also describe the 44% as 'standard examinations' which will lead the reader to believe it's been compared to standard diagnosis methods which it has not.

Oh, and an unproven explaination of how the treatment (not diagnostic method) works to restore health, from Perrin himself: "Eventually, with no poisons affecting the brain, the sympathetic nervous system begins to function correctly and health is restored," Dr Perrin said."