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This is the second of three blogs examining the possibility that upper body/head issues play a role in chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM). The first blog examined the possibility that high blood pressure in the brain was present in ME/CFS and FM.

In this blog, Health Rising examines Ray Perrin’s hypothesis that a toxic overload in the brain is causing ME/CFS and FM.

Ray Perrin PhD, D.O. a U. K. osteopath, has been digging into chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) for almost three decades.  His journey with ME/CFS began when a professional cyclist suffering from ME/CFS walked into his sports medicine clinic way back in 1989 and then walked out five treatments later healthy again.

Perrin wasn’t trying to treat the cyclist’s chronic fatigue syndrome; he was trying to fix his posture, but on the way to fixing his posture – which required using a variety of techniques – he ended up curing his ME/CFS. That cyclist provided Perrin with a clue that he’s been following up on for almost 30 years: the cyclist was experiencing a “mechanical strain” on his spine in the chest area. When Perrin improved the movement in his upper back, the cyclist was able to return to cycling.

“You’ve got to find out what you’ve done because you got me better and nobody else has.” I thought it was just a coincidence. But then I was a bit inquisitive. I’ve always been inquisitive and I wanted to find out what I had done. And that’s when I started looking at other patients who had the symptoms then and I noticed there were physical signs in all these patients, especially in the spine. That’s what set me on this long road and then I came up with my ideas and a hypothesis of what ME is and then the rest is history, as they say. 28 years on…Ray Perrin – the Ari Whitten interview.

Perrin comes from an osteopathic tradition in the U.K. which is very focused on reading physical signs and manipulating the body. He was the first medical professional I know of to propose that a unique physical structural problem is present in ME/CFS/FM. Perrin believes that the practice of reading the body is something of a lost art in the medical field. Perrin’s PhD thesis ended up being on ME/CFS.

They (doctors) look at what tests they can do and what their scan shows, but they don’t actually look at the person, feel the person. And I, as an osteopath, do. And this is what we do and I started looking for more and more signs that these patients all shared.  The Ari Whitten Interview

Personally, his general thesis doesn’t surprise me at all. My pain begins at the chest area and proceeds upwards. Trying to relieve my neck tightness with frequent stretching exercises resulted in nausea, flu-like symptoms and pain. After walking or exercising – it’s my chest and upper body which are in pain – not my legs. Touching virtually any part of my face will elicit pain. Whether or not Perrin’s hypothesis has found the or a cause of ME/CFS/FM, something is going on in my upper body.

A Toxic Brain

gears brain

Perrin believes toxins are flooding ME/CFS and FM patients’ brains.

Perhaps only an osteopath – a doctor specializing in structural problems – could have come to Perrin’s conclusion. He believes that toxic overload in the brain, caused by a malfunctioning sympathetic nervous system, causes distinct physical signs in the upper bodies of ME/CFS/FM patients.

The Brain’s Lymphatic System

The lymphatic system in our body serves to collect and process large toxins, but no such system was believed to exist in the brain.  For hundreds of years, researchers have wondered how the brain effectively gets rid of its waste. The cerebral spinal fluid is one avenue but it seemed a poor second to the role the lymphatic system plays in the body.

The brain’s lymphatic system was rediscovered in 2017 by NIH researchers (two hundred years after an Italian anatomist reported that he’d spied lymphatic tissues in the brains of mice. Sometimes the medical system takes a long, long time to catch up :))  That finding is spurring new research into diseases like multiple sclerosis, Alzheimer’s and other neuroinflammatory disorders.  Perrin believes the buildup of amyloid proteins in Alzheimer’s could result from poor lymphatic drainage. (Avindra Nath, the lead investigator in the NIH’s intramural study believes ME/CFS may be an neuroinflammatory disorder.)

Interestingly, blocking that lymphatic drainage in mice results in a buildup of fluids in three areas of the brain associated with ME/CFS: the hypothalamus, the thalamus and the basal ganglia.

Decades ago, Perrin was on a similar trail. He believed lymphatic drainage from the brain was occurring but he didn’t know from where. He did know that the cerebral spinal fluid drains toxins from the brain through a bony plate (cribriform plate) situated above the nose. From there, the toxins drain into lymphatic vessels around the nasal sinuses and the optic, auditory and trigeminal nerves in the eye, ear and cheek and along the spine. From there they flow to the thoracic duct and finally into the blood, where they end up at the liver.

Perrin’s osteopathic training taught him that the main drainage point of the lymphatic system was found at the thoracic duct in the chest area. This thoracic duct has a pumping mechanism controlled by a system – the sympathetic nervous system – that researchers have long found to be dysregulated in ME/CFS and fibromyalgia.

Perrin hypothesized that blocked or congested lymphatic drainage pathways in ME/CFS and FM were causing toxins to build up in the central nervous system. That toxin buildup was disturbing the hypothalamus, which, in turn, was causing sympathetic nervous system problems.  The hypothalamus is the only part of the brain with direct access to the blood. It needs this access to regulate insulin levels in the blood but it comes at a cost  – less protection from toxins.

Those SNS problems were, in turn, blunting the pumping action of the key lymphatic drainage point – the thoracic duct. In fact it’s worse than that. Perrin believes the pump in ME/CFS/FM is working backwards – instead of pumping lymphatic fluid to the body, it’s actually pumping lymphatic fluids back towards the brain – and Perrin believes this can push toxins into the brain. (That retrograde pumping mechanism shows up in odd-looking varicose veins in the chest area.) Those toxins then destabilize the hypothalamus and sympathetic nervous system – which, in turn, whacks the pumping mechanism. In short, a vicious circle which maintains high toxin levels in the brain is present.

Perrin now believes that the entire brain is probably affected by increased toxin levels with the limbic system (hypothalamus, thalamus, basal ganglia) most affected. That’s enough of the brain to easily produce the movement, sleep, fatigue and cognitive problems found in ME/CFS/FM. Because the lymphatic drainage from the brain mostly occurs during the delta stages of sleep, it’s possible that the sleep problems in ME/CFS – which have been linked to autonomic nervous system dysfunction – are reducing drainage as well.

Physical Signs of ME/CFS and Fibromyalgia

Perrin is the first to postulate that direct physical evidence of ME/CFS and FM exists in the form of frozen or limited spinal mobility, particularly in the middle and upper back, swollen lymph vessels and specific tender points. He’s said he’s never seen an ME/CFS patient who doesn’t have a thoracic (upper and middle) spine problem.

The Perrin Point is a tender point about 2 to 3 cm to the left and 2 to 3 cm above your left nipple. It’s also generally found between in the third intercostal space between the third and fourth ribs (counting from the top).

Each of these physical findings, Perrin believes, relates to problems with fluid drainage from the brain. Each, Perrin also asserts, can be manipulated using cranial osteopathic techniques to stimulate renewed flow of cerebral spinal and lymphatic fluids, thus relieving the buildup of toxins in the brain and relieving the symptoms of ME/CFS/FM.

Once toxin levels drop and normal lymphatic drainage resumes, Perrin states the patient is free of chronic fatigue syndrome (ME/CFS). Throughout the book, Perrin refers to numerous recovery stories.

Success Story

One young ME/CFS patient who was virtually carried into his office had a strong curvature in her mid-upper back region, tender points in certain areas, lymphatic congestion and a very sluggish “cranial rhythm”. Perrin reported that an intensive course of soft tissue massage and spinal articulation improved her lymph drainage and the girl was able to successfully return to school, gain a degree and remained healthy at the time of the book’s printing.

 

Historical Antecedents

Perrin believes his hypothesis has historical antecedents.  Way back in 1871, Dr. Da Costa proposed in the American Journal of Medical Science that Da Costa’s Syndrome, a fatigue disorder encountered during the Civil War, was caused by physical overexertion and stress which caused an irritation of the heart. The key symptom in the syndrome was the inability of soldiers, after they returned to the battlefield, to keep up with their fellow soldiers. The central problem, Da Costa proposed, was an imbalance in the nerve supply (sympathetic vs parasympathetic) to the heart.

“Effort Syndrome” (also called “neurocirculatory asthenia”), identified by Sir Thomas Lewis in World War I, was associated with a “drooping posture” that Perrin believes was harmful.  Stating “the mechanical strain that a bowed upper spine places on the sympathetic nervous system is immense”, Perrin believes the drooping posture contributed to the sympathetic nervous system problems in those patients.

Perrin proposed that the Royal Free Outbreak which mainly involved nurses may have been the result of an infection hitting a physically overburdened population (nurses doing heavy lifting) with spinal issues.  Noting the specificity some viruses have for certain tissues, he proposes that the viruses involved in ME/CFS may be attacking the sympathetic nerves in the upper chest and lumbar regions.  Several herpes viruses are known to hang out in the nerve ganglia found just outside of the spine.

Success Story

Perrin reported on a young woman in wheelchair unable to attend school who had a cyst (syrinx) on her spine and a mild case of Chiari malformation, but who was nevertheless being given only psychological treatment. She had not been given a diagnosis of ME/CFS. Upon examination Perrin, found that her upper spine was “severely flattened”, she had lymphatic swelling in her chest as well as the tender areas found in ME/CFS/FM patients.  Perrin believed the syrinx and upper spine problems were blocking her lymphatic drainage.  After treatment, she was able to return to school. Perrin described her as a “very active 15 year old with a full life”.

The second trial, which included using an MRI to examine white matter, blood flow and cerebrospinal fluid flow, found no “detectable pathological structural brain abnormalities“.

The Perrin Treatment Protocol

“When patients remain symptom-free between their six monthly checkups and are able to perform all reasonable activities with no after-effects…they are pronounced cured.”

Perrin believes that by relaxing the muscles and decreasing the intensity of incoming sympathetic impulses he’s able to improve the circulation of spinal fluid and remove the toxins that have built up. That allows the hypothalamus to reset itself and the sympathetic nervous system.

Perrin described six techniques he uses to increase lymphatic flow: specific lymphatic massages, gentle articulatory maneuvers to increase mobility of the spine, soft tissue massage of the muscles, chiropractic adjustments, cranio-sacral techniques to improve the cranio-sacral rhythm, gentle functional techniques to release the pelvic area, and exercises. Perrin told Whitten that standard lymphatic drainage techniques make ME/CFS patients worse because they stimulate flow in the wrong direction.

After relaxing the upper back muscles and increasing movement in the spine, Perrin attempts to free up the lungs by relaxing the respiratory muscles using a technique called “diaphragmatic release”.

Perrin’s exercises can easily be done at home and consist of gentle twisting of the upper body while the hands are held around the side of the neck, while crossing one’s arms and hugging one’s shoulders, and with the arms folded at the waist. I found that they can significantly decrease tension in the upper body.

Perrin also describes self-massage techniques to aid lymphatic drainage. One simple technique called nasal release can bring about a ‘lasting release”. He recommends sleeping on your side with a cushion between your knees to aid drainage from the brain and spine. He also recommends blue light filters on your computers, tablets. etc. and, staying off those devices before bedtime.

Instead of anti-inflammatories, Perrin prefers alternating warm and cold packs or compresses, particularly in the upper and middle back for about 10 minutes.

Treatment sessions occur once a week for the first 12 weeks, after which they decline in frequency. Severely ill patients may take up to 3 years of treatments, while the moderately ill may take 8-12 months. Getting adequate rest is critical. The very severely ill FM and ME/CFS patients can be difficult to treat if they can’t tolerate being touched.

Side Effects Indicate Treatment is Working

Perrins states he can tell if the protocol is working by the side effects; the worse off the patient feels, the better the ultimate outcome. Side effects are common early in the treatment and usually consist of symptoms like nausea, headaches and pain. Spots, boils, and other skin eruptions may occur as the released toxins filter through the skin.

Not a Panacea

Perrin is clearly helping people, but his protocol is not a panacea. In his 2007 book, Perrin reports on the results of two separate clinical trials conducted between 1994 and 2005. The first 40 person trial found an average improvement of 40% in the treated ME/CFS group and an average decline of 1% in the untreated group.  Tests indicated that muscular fatigue was significantly reduced in the treated group – something Perrin believes was due to increased waste removal from the brain.

Perrin’s study produced moderate effects, but he reports that his protocol “often hugely improves the patient’s health”.  In the Whitten interview, he reported that he’s been able to get patients “from bedridden, to sitting, to standing, to walking, to back to normal life”. Treatments that haven’t been effective in the past can become effective or more effective as the toxin levels in the brain decline.

He also noted that his protocol doesn’t help everyone and that most patients will need other kinds of treatments to become well. About 15% do, however, recover completely. He warned doing the technique incorrectly can make patients worse.

A new treatment study is underway and expect a new book out this year.

The Test

Perrin put his diagnostic protocol to the test in a 2017 study. Two health professionals – an experienced Perrin practitioner and a practitioner new to the technique – assessed a variety of physical signs (postural/mechanical disturbances of the thoracic spine, breast varicosities, Perrin’s Point, tender coeliac plexus and dampened cranial flow) in 94 ME/CFS patients and healthy controls. The criteria for inclusion were stiff muscles. Patients were diagnosed with having ME/CFS only if all five physical signs were present.

Using purely physical measures, an experienced Perrin technique practitioner was able to correctly identify 88% of the ME/CFS patients and 83% of the healthy controls. The inexperienced practitioner identified 69% of the ME/CFS patients and 86% of the healthy controls.

Dr. Perrin Talks

Part I of a 6-part Series

Recent 2017 Interview

 

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