Thanks for the link to the paper @Marco
Other threads have also posted this paper with nice summaries by @Hip
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