Message from Dr Perrin on International ME Awareness Day
Today we celebrate international ME awareness day that coincides with Florence Nightingales birthday, as she was known to be ill after returning from The Crimea with an illness that has been regularly dismissed over the years as all in the mind but is very much a physical disease, with many real signs and dozens of symptoms.
It is over 60 years since ME/CFS was first identified in the NHS and still millions of people worldwide receive no major help for it. ME/CFS is characterised by severe, debilitating fatigue that is exacerbated by exertion but does not improve with rest. The condition can lead to a substantial functional impairment, making every day activities difficult and sometimes impossible to carry out. There is currently no universally accepted method of diagnosing ME/CFS, nor of treating it.
I have researched and treated ME/CFS for 29 years and I believe it is an example of newly classified neuro-lymphatic diseases. The lymphatic system enables our bodies to get rid of harmful substances and now there is visual proof from scans that there is a true lymphatic system lining the brain and spinal cord which was never previously known to exist.
Emotional or physical stress, an over-reaction to infections or pollution can all lead to an over-strain of the nervous system due to a build-up of toxins in the fluid around the brain and the spinal cord. These toxins are meant to drain through lymph ducts in the face, neck and spine mostly at night when we are in deep, restorative sleep known as delta wave sleep. Unfortunately, in a ME/CFS sufferer these normal drainage points are congested and as they get little delta wave sleep, the toxins stay in the brain at night with some draining away during the day. A backflow of toxins into the central nervous system creates further damage to the brain and affecting functions such as sleep, temperature control, moods as well as pain in muscles and joints all over the body. Other symptoms include reduction in concentration, difficulty reading, sinusitis, short-term memory problems, ‘muzziness’ in the head/brain fog, headaches, increased sensitivity to light and noise, nausea, sore throat and dry eyes, but most of all it is the post-exertional malaise and fatigue that affects patients. This is due to the toxins stuck in the brain which often makes most sufferers feel poisoned.
The literature suggests that a range of other possible causes including hormonal disturbances, immune system dysfunction, infectious and viral agents and nervous system abnormalities which may all play a role in the pathophysiology of the disorder.
Treatment which formed part of the NICE guidelines for the past 11 years using Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) has been very controversial and opposed by many ME/CFS sufferers and by many members of the scientific community. Thankfully in January NICE announced that they were “tearing up the old guidelines and starting afresh”.
In 1989 I developed a manual physical technique for ME/CFS , The Perrin Technique which has so far been tested in two open trials that showed patient benefit (Perrin RN, Edwards J, Hartley P. 1998. & Perrin RN, Richards JD, Pentreath V, Percy DF , 2011)
For 29 years the Perrin Technique has been used to treat ME/CFS patients across the world with alleviation of symptoms in the vast majority of cases. After a recent publication in the British Medical Journal demonstrating proof of concept of the underlying principles of my method there is more interest in my techniques within the health service. Hopefully later this year new research is due to start at Salford Royal Hospital in conjunction with Manchester University and the University of Central Lancashire looking into new treatment for ME/CFS within the NHS.
It is most important that we raise awareness about this illness that affects hundreds of thousands of people in the UK and Millions worldwide. Around 25% of patients with ME/CFS are too ill to leave their homes with many bed-ridden in darkened rooms and ear defenders due to the fact that they cannot even tolerate light and any noise. ME/CFS is not the worst illness that we know of but it is definitely one of the cruellest as most of the people who suffer from this disease are pushers and doers before they were ill. Most ME/CFS patients are very active before this illness struck and if will power were enough to help them recover , most have willpower in abundance . However that is the cruel irony of the disease. Will power helps many people recover from many diseases as the part of the nervous system stimulates the immune system to improve, however with ME/CFS it is that part of the neuro-immune system that is dysfunctional and so the more a patient wills themselves to recover the worse they become. The more active they try and become the greater the symptoms and this vicious cycle continues until the patient has no energy left.
Unfortunately, I can’t be with you today as I am lecturing in Krakow this weekend, otherwise I would have been addressing you personally on this special day. I wish you and all the Missing Millions organisers my best wishes for a day of enlightenment and success in raising as much awareness of the horrendous illness that we know simply as M.E.
With very best wishes,
Dr Raymond N. Perrin DO PhD
Registered Osteopath and Neuroscientist
Specialist in ME/CFS.