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Perrin claims 86% success rate diagnosing ME/CFS

Discussion in 'Latest ME/CFS Research' started by Marco, Nov 15, 2017.

  1. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
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  2. MartinDH

    MartinDH Senior Member

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    Voodoo...
     
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  3. Hip

    Hip Senior Member

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    In the BMJ paper, the 5 criteria physical examination that was able to detect ME/CFS patients with an 86% accuracy is the following:
    If all 5 signs are present, then the person is classified as having ME/CFS, according to Dr Raymond Perrin's criteria.

    Using these criteria, a health professional with 10 years training in the Perrin technique was able to identify ME/CFS patients with 86% accuracy. The ME/CFS patients in the study were selected using the International Consensus Criteria.

    A newly trained health professional (newly trained for the purpose of this study), with no previous experience of ME/CFS patients, was able to diagnose ME/CFS with 77% accuracy using the above 5 criteria.



    However, the 86% diagnostic accuracy of the above 5 criteria is only marginally better than the results of a previous 2011 study that used a far simpler physical diagnostic technique, which was to test for abnormal breast tenderness at "Perrin’s point," which is located around 2–3 cm left and 2–3 cm above the left nipple (in other words, using only criteria 3 above).

    Using this simple Perrin’s point test alone, an 81% diagnostic accuracy of ME/CFS was obtained in the 2011 study.



    You can try the Perrin point test yourself: just press your finger into your skin at a point around 2–3 cm to the left and 2–3 cm above your left nipple; if you feel tenderness at this point, this is diagnostic for ME/CFS, with 81% sensitivity and 100% specificity (meaning that 81% of ME/CFS patients are found to tenderness at this point; and none of the healthy controls had this tenderness).

    Perrin puts this tenderness down to lymph flow stagnation and an irritation of the sympathetic nerves of the thoracic duct.
     
    Last edited: Nov 16, 2017
  4. Jenny

    Jenny Senior Member

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    Interesting. I saw Raymond about 6 years ago. He was using these criteria then, and I only met one, the fifth. Nevertheless he agreed I had ME (at that point I had had 29 years of relapses and remissions, was in a bad spell when I saw him, and met the CCC definition.)

    I had about 45 lymphatic drainage and cranial osteopathy treatments over a period of a year, sometimes from him and sometimes from one of his osteopaths. I was no better and no worse.

    Is this more evidence that ME is a cluster of heterogeneous conditions?

    (I should say that I found Raymond to be a lovely man, who is genuinely putting a lot of effort into helping people find some relief from their symptoms.)
     
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  5. knackers323

    knackers323 Senior Member

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    What is the explanation for the perrin point?
     
  6. keenly

    keenly Senior Member

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    NO, the lymphatic system is imperative to human health.
     
  7. Hip

    Hip Senior Member

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    Dr Raymond Perrin thinks there may be something wrong with the functioning of the thoracic duct in ME/CFS patients. The thoracic duct plays the role of the beating heart of the lymphatic system, helping to pump lymph fluid around the lymph vessels. The pumping beats of the thoracic duct are controlled mainly by the sympathetic nervous system, and Perrin says that if the sympathetic nervous system is hyperactive, the thoracic duct pump may go wrong (and lymph fluid may flow backwards).

    Raymond Perrin says the Perrin point of the left breast is in the region where the top of thoracic duct tube turns left to enter the subclavian vein, and in the region where two sets of sensory nerves join. Perrin believes that when the thoracic duct malfunctions, toxins carried by the lymph fluid can actually be pumped back into the breast tissue (and into the brain). Ref: 1

    The Thoracic Duct is the Vertical Tube Shown in Green at the Center of the Torso. The Thoracic Duct Joins the Subclavian Vein (Shown in Blue) in the Left Breast Region
    thoracic duct.jpg

    The thoracic duct is a simple setup: it is just a narrow tube containing a series of one-way valves, with this tube rhythmically compressed under pulsed smooth muscle contractions that occur once every 10 to 15 seconds.

    These smooth muscle contractions serve to pump the lymph fluid along the thoracic duct (the fluid can only move in the forwards direction, because the one-way valves prevent the fluid from moving backwards). These smooth muscle contractions are triggered by the autonomic nervous system (primarily the sympathetic branch of the autonomic nervous system). Ref: 1

    Additionally, the action of breathing rhythmically compresses the thoracic duct, and this also serves to pump the lymph fluid forwards.

    The thoracic duct pumps 1 to 2 ml of lymph fluid every minute (equivalent of around 2.5 liters of lymph fluid every 24 hours), but during digestion of a meal, it pumps at up to 10 times that rate. Ref: 1 2

    Incidentally, the lymph vessels in other areas of the body also possess smooth muscles which, in the same way, contract rhythmically, compressing the lymph vessels and pushing the lymph fluid forwards through the one-way valves. And in addition, the use of the skeletal muscles (eg when moving your limbs) also serves to compress the lymph vessels and push the lymph fluid forwards. Ref: 1 So it is not just the thoracic duct that does the pumping: lymph fluid is also pumped locally within the lymph vessels of the lymphatic system.



    This informative article about Raymond Perrin's theories says:
     
    Last edited: Nov 16, 2017
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  8. ukxmrv

    ukxmrv Senior Member

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    I had a CFS doctor examine what I think was the same point in 1999ish. That may be something Perrin picked up from elsewhere. I can't remember the significance back then but will have a look at my medical records.
    The doctor I saw worked with Dr Cheney previously so may have come out if his heart work.
     
  9. Gemini

    Gemini Senior Member

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    Years ago I remember Dr. Cheney referring to the tender spot on the left side of the body at that point which patients were describing to him as a symptom.

    He associated it anatomically with the lymphatic drainage system and thoracic duct, a main junction on the left side.

    Some patients were concerned about it being a possible cardiac problem because of its location on the left side of the body, I believe, so you're right it may have come out of his heart work @ukxmrv!
     
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  10. Scarecrow

    Scarecrow Revolting Peasant

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    The Perrin Technique dates back to the late 1980s, it'll be the other way around.
     
  11. Scarecrow

    Scarecrow Revolting Peasant

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    You may well find that it is tender on both sides and in a proportion of people it's worse on the right.
     
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  12. perrier

    perrier Senior Member

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    Has anyone here been helped with this technique? I just watched Perrin's video on his website,and the cures are innumerable. Is this reliable? There are thousands upon thousands of young people lying in bed losing their best years. Or is this just another one of those physicians making promises which don't materialize?

    It's not an invasive approach. Our family member has had many lymphatic massages but no result.
    On the video it's shockingly easy looking, in contrast to the severe symptoms.
     
  13. perrier

    perrier Senior Member

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    Jenny, what did Dr Perrin think when there was no improvement? What did he say to you. Do you know what percentage of his patients are improved. His website is very optimistic. Your question is really valid?
     
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  14. Hip

    Hip Senior Member

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    Last edited: Nov 15, 2017
  15. ukxmrv

    ukxmrv Senior Member

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    But when did he declare it the "Perrin point" and put all this emphasis on it? (I've know patients who have seen him personally and a long time ago)

    p.s

    I've just had a look at Hip's diagram of the Perrin Point and it's different to the one my CFS doctor checker me for.

    That one was more like this diagram for "Thoracic Outlet Syndrome" on this diagram here

    https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

    So not related to the Perrin Point...
     
    Last edited: Nov 15, 2017
  16. Jenny

    Jenny Senior Member

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    He said right from when I first saw him that not everyone improves, and that he has more success with people who have only had ME for a short time. (I had had ME for 29 years at that point.) He said that he doubted that I would be cured with his treatment, but he hoped I would get some benefits. I don't know what percentage improve.
     
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  17. Londinium

    Londinium Senior Member

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    Colour me unconvinced. Beyond lots of testimonials, what scientific evidence does he have that ME/CFS can, essentially, be cured by a fancy massage? If the mechanism is some sort of failure of the lymphatic system, has there been any experiments that actually try and measure the movement of lymph fluid? Any evidence that lymph fluid is flowing 'in the wrong direction'?

    This study, IMHO, provides little decent scientific evidence: the confounding factors are too large. An 'advanced practioner' might well be able to get an inkling (even if only subconciously) whether the person they are examining is unwell vs a healthy control, regardless of what prodding and poking they do. Compare ME/CFS patients with, say, MS patients as a control and I'll revisit my view on that.

    Otherwise, I'll tick off the following red flags:
    • 'Osteopathic approach'
    • Trademarked process
    • 'Buy this DVD to learn more!'
    • AFAIK, not a single paper on Pubmed testing the Perrin Technique itself, just this 'diagnosis' paper and the original hypothesis paper that appears only to have been cited in English by a couple of chiropractors in alternative health journal.
    • Apparently very simple approach for a highly complex illness.

    Think I'll file this one next to the SMILE trial.
     
  18. Scarecrow

    Scarecrow Revolting Peasant

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    I can't give you the earliest date for this but it was no later than 1994, which is when he began a series of small trials, the first of which incorporated Perrin's Point. The paper was published in 1998, so that ties in nicely with your doctor's interest but it's odd to confuse that with the thoracic outlet, so maybe your doctor was looking at something else entirely.

    Edit: Note that the thoracic duct comes out an area adjacent to the thoracic outlet. If you look at @Hip's diagram, the tender point is where the duct turns near the clavicle.
     
    Last edited: Nov 15, 2017
  19. rodgergrummidge

    rodgergrummidge Senior Member

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    Thanks for the link to the paper @Marco .
    Other threads have also posted this paper with nice summaries by @Hip and @Murph including a poll.

    The diagnosis of ME/CFS is incredibly complex and an accurate differential diagnosis requires careful investigation and possible consideration of many other complicating factors and underlying co-morbidities. In my opinion, this study is fundamentally flawed and it seems strange that despite such flaws, it was accepted for publication.

    The method uses quite a clever trick that makes it appear that an osteopath, massage therapist, physiotherapist or other allied health practitioner trained in the Perrin Technique can diagnose ME/CFS with greater accuracy than an actual medical doctor.

    Here is what an observer would see (as described in the methodology of the paper): A 'ME/CFS doctor' (who is not an actual medical doctor) examines 108 people, half with ME/CFS and half not having ME/CFS. He/She looks at them standing up and lying down. He/She announces that his/her finger can 'detect ME/CFS' simply by poking the patient in a few places. Then, while massaging the head, He/She announces that they are 'feeling for the brain's rhythmic pulse' that will determine if the patient has ME/CFS. He/She then announces the 'diagnosis' and astounds the audience by accurately 'diagnosing' ME/CFS patients 86% of the time. Just with a bit of looking, observing, prodding, poking and head massage. How could it be possible? Is it really possible that an 'ME/CFS doctor' (who is not an actual medical doctor) can accurately diagnose a highly complex disease with diverse symptoms ranging widely in severity just by looking, poking and massaging? Even more remarkably, how can an 'ME/CFS doctor' (who is not an actual medical doctor) diagnose ME/CFS even more accurately than an actual medical doctor?

    Here's how it is done: In the real world, the diagnosis of ME/CFS is incredibly complex and an accurate differential diagnosis requires careful investigation and possible consideration of many other complicating factors and underlying co-morbidities. It is simply not possible to prod and poke at people and accurately diagnose ME/CFS. But the trick of this study is that it is not performed in a real-world setting. There are only 2 types of people examined, i) ME/CFS patients and ii) perfectly healthy controls. There are no patients that are sick but dont have ME/CFS. Anyone with anaemias, autoimmune diseases, cardiac disease, endocrine disorders, infectious diseases, intestinal diseases, malignancies, neurological disorders, primary psychiatric disorders, significant pulmonary disease and primary sleep disorders are all excluded.

    So, any osteopath, massage therapist, physiotherapist or any other allied health practitioner whose sole focus is to use the Perrin Technique for the specific diagnosis of ME/CFS will easily identify ME/CFS patients when its the only disease in the study! The 'ME/CFS doctor' whose only focus is ME/CFS is simply being asked to recognize the difference between a perfectly healthy person and a really sick person suffering from a long-term chronic and debilitating illness (ie ME/CFS). How hard could it be?

    Well, diagnosis by the allied health 'ME/CFS doctor' would be a simple matter. Most ME/CFS patients that are made to stand for sufficient periods to allow 'changes in temperature' to be measured would demonstrate very obvious signs of illness. Similarly, prodding and poking an ME/CFS patient for which one of the major symptoms is chronic pain and a hightened pain responses would easily allow sick ME/CFS patients to be distinguished from a perfectly healthy control.

    Of course, osteopaths, massage therapists and physiotherapists would be completely unable to make a differential diagnosis of ME/CFS using such techniques with any accuracy if the studies tried to replicate an actual real-world diagnosis in a clinic where other diseases would be present. It is simply not possible to provide an accurate differential diagnoses of ME/CFS from other diseases such as anaemias, autoimmune diseases, cardiac disease, endocrine disorders, infectious diseases, intestinal diseases, malignancies, neurological disorders, primary psychiatric disorders, significant pulmonary disease and primary sleep disorders by prodding, poking, and feeling the rhythmic pulse of the head.

    Yes, but why didnt the actual physician diagnose ME/CFS with greater accuracy? There is where the 'slight of hand' is not obvious at first glance. The allied health 'ME/CFS doctor' that is specifically trained in the art of the Perrin Technique for specifially diagnosing ME/CFS in a cohort where the only disease present is ME/CFS was 86% accurate. In contrast, the fundamental nature of how a medical physician makes a diagnosis is completely different. The medical physician is trained to perform differential diagnosis by examining 100s of potential symptoms that can lead to a myriad of diseases each of which can be present with many potential co-morbidities and other predisposing factors. Thus, as might be expected from the design bias incorporated in the investigators, the fundamental diagnostic approach used by a physician doctor to make a differential diagnosis ensured that their diagnostic accuracy for ME/CFS would be lower. Encouragingly, despite the design bias, the 69% diagnostic accuracy of physician doctors was only 17% lower than the allied health 'ME/CFS doctors'.

    Thus, for a 'ME/CFS doctor' who has been specifically trained in the art of the Perrin Technique which is specifically designed to diagnose ME/CFS, its a simple binary decision with a forgone conclusion. A sick person= ME/CFS. A healthy person=healthy. A Yes or No answer. On the other hand, whether we think physician doctors are good or bad at diagnosis, their over-riding approach used for assessing any patient is entirely different and involves i) taking an evidence-based approach and considering many potential symptoms, diseases and conditions and ii) taking a cautious approach and ensure that a rush diagnosis is not made based on a single consultation without firstly eliminating a range of alternative possibilities. Allied health 'ME/CFS doctors' trained in the Perrin Technique do not operate under such constraints.

    Nevertheless, despite these design flaws, the only category where actual medical physicians made the 'wrong diagnosis' was in failing to diagnose ME/CFS in an actual ME/CFS patient. However in all other categories the physician doctor was 100% accurate and provided a more accurate diagnosis than the osteopaths, massage therapists and physiotherapists.

    Conclusions of the study: Given the major methodological flaws in this study, the findings neither validate the Perrin Technique nor do they invalidate the diagnostic abilities of medical physicians.

    Yeah, but I went to 10 physicians before I got an accurate diagnosis. My experience was that most physicians didnt didn’t even care. Unfortunately, this is all too common for ME/CFS sufferers. Not only is it a difficult disease to diagnose, but many medical physicians are either dismissive or are unaware of how to diagnose and manage the disease. Adding further confusion, there is simply no accepted biological test and ME/CFS diagnosis is made on the basis of a questionaire and the exclusion of other possible conditions. Many of us have struggled in our efforts to obtain a clear diagnosis. Many ME/CFS sufferers have had to face the dismissive attitudes held by many ‘mainstream’ medical physicians where we have been ignored and maligned. As important as these issues are, they don’t change the fact that it is simply not possible to make a differential diagnosis ME/CFS based on palpation, prodding, poking, tenderness, and feeling for a rhythmic pulse in head.

    But what choice to we have? We have to try everything! Right? I guess thats a personal decision we all have to make. Personally, I’ve accepted now that there are no 'magic bullets' for my ME/CFS. I am still doggedly pursuing my ‘cure’, but I try to make each decision based on the level of evidence available and the potential risk/benefit. If i’ve learnt anything from having ME/CFS is that having a medically trained doctor with extensive experience in diagnosing and treating ME/CFS is essential. In seeing many doctors, my criteria was that if they didnt have the necessary expertise, I simply moved on. If the doctor didn’t care, didn’t have the time, didn’t have the experience, wasn’t aware of the latest research, wasn’t prepared for the long haul, I simply tried another doctor. And then another doctor……. And so on……..

    Admittedly, I learnt these lessons only after making nearly every rookie mistake commonly made by ME/CFS patients. But, my personal opinion is that there are treatments and cures out there for all of us. But, given everything we know about ME/CFS, my opinion is that treatments and cures are unlikely to come from osteopaths, massage therapists or physiotherapists.

    Food for thought

    Rodger
     
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  20. keenly

    keenly Senior Member

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    I was helped. The first 3 months was horrible. Definite detox reaction! I was feeling sick everyday.

    However unless you then move to a perfect location you will inevitably face more environmental toxins and have same problems arise. It is NOT A FIX, merely a helpful tool.
     
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