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This practical handbook gives you the basics of WHY and HOW to use the Perrin Technique to underpin recovery from Long-Covid and restore healthy lymphatic drainage from the brain following Covid-19 infection or vaccination. Bringing together the post-pandemic context, the background science and Dr Perrin's clinical findings, this new book is a clear, concise account of the structural and neuro-immunological problems that can lead to the symptoms of Long-Covid and is ideal for patients wishing to gain an understanding of their complex condition as well as for health practitioners and physical therapists wishing to understand the basics. Through the Looking Glass takes readers through the confusion around what Long-Covid really is and out the other side where it is possible to have a much clearer view of what treatment will work and why.
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In memory of
A caring and loving Perrin Technique™practitioner
Ruth Wolstenholme
1977–2023
&
My dear friend, and philanthropist for ME/CFS causes
Dr Andrew Douglas PhD
1960–2023
&
A true medical pioneer in the field of ME/CFS and Lyme disease
Friend, mentor and colleague
Dr Andy Wright
1959–2024
Chapter 2: Diagnosing long COVID
Fig. 1 The palpable and observable physical signs of long COVID
Fig. 2 Comparative photographs showing a flattened mid-thoracic spine
Fig. 3 Examining a male patient for ‘Perrin’s Point’
Fig. 4 Schematic illustration showing normal flow within a healthy lymphatic vessel
Fig. 5 The development of varicose megalymphatics
Fig. 6 Right subclavicular varicose megalymphatics, lacking the bluish hue of varicose veins, in patient with ME/CFS (see also Plate 1)
Fig. 7 Megalymphatics throughout the left breast of a 73-year-old long COVID patient (see also Plate 2)
Chapter 4: Treating long COVID using the Perrin Technique™
Fig. 8 The thoracic duct (the main central lymphatic drainage system into the blood)
Fig. 9 Restricted drainage of toxins from the central nervous system
Fig. 10 The downward spiral into long COVID
Fig. 11 Effleurage down neck and up chest to clavicle
Fig. 12 A concertina
Fig. 13 The concertina effect
Fig. 14 Combined articulation, soft tissue stretches and paraspinal effleurage
Fig. 15 Longitudinal and cross fibre stretching of lower neck and shoulders (trapezii and levator scapulae muscles)xiv
Fig. 16 Functional technique to the suboccipital region
Fig. 17 Cranial treatment
Fig. 18 A blacksmith’s bellows
Fig. 19 Sacral treatment
Fig. 20 Combined leverage and thrust of mid-thoracic vertebrae
Fig. 21 Combined leverage and thrust on the upper lumbar spine
Fig. 22 Gentle combined leverage and thrust on the lower cervical spine
Chapter 5: The recovery process
Fig. 23 The jigsaw puzzle analogy (see also Plate 4)
Fig. 24 The meaning of ‘chillax’
Chapter 6: Can long COVID be cured?
Fig. 25 Cross section of the skull (top) and outer layer of the brain, showing the subarachnoid lymphatic-like membrane (see also Plate 5)
Fig. 26 Enlarged perivascular spaces. Prominent perivascular spaces in the right greater than left basal ganglia were visualised on MRI
Fig. 27 A schematic diagram showing the key drainage pathways from the brain. (see also Plate 6)
Fig. 28 The hypothalamus and the pituitary gland showing the main hypothalamic regions disturbed in long COVID.
Chapter 7: Self-help advice
Fig. 29 Upper thoracic rotation exercise
Fig. 30 Mid-thoracic rotation exercisexv
Fig. 31 Lower thoracic rotation exercise
Fig. 32 Shoulder rolling exercise
Fig. 33 Nasal release
Fig. 34 Facial self-massage
Fig. 35 Self-massage to head
Fig. 36 Self-massage to front of neck
Fig. 37 Self-massage of the breast
Fig. 38 Cervical isometrics: (a) Attempting to bend head forward, prevented by gentle backwards pressure of hands
(b) Attempting to bend head back, prevented by gentle forward pressure of hands
Fig. 39 Cervical isometrics: (a) Attempting to bend head to the left, prevented by gentle counter-pressure of left hand
(b) Attempting to bend head to the right, prevented by gentle counter-pressure of right hand
Fig. 40 Cervical isometrics: (a) Attempting to tuck in chin, prevented by gentle forward counter-pressure of thumbs
(b) Attempting to push chin forward, prevented by gentle backwards counter-pressure of fingers
Fig. 41 Head rest exercise
Fig. 42 Breathing exercises
(a) Starting position (front view).
(b) Patient, whilst breathing out, bending forwards, elbows closing in (front view)
(c) Patient in bent sitting position (front view)
(d) Patient in bent sitting position (side view)
(e) Patient breathes in, straightening back whilst pushing elbows out (side view)
(f) Patient back at the starting position (side view)
Fig. 43 Adapted back sculling technique
Chapter 9: Diet and supplements
Fig. 44 An ME/CFS patient and her daily medication
Fig. 45 The same patient after receiving the Perrin Technique™ and reducing her supplements and medication intake
Appendix: Frequently asked questions
Fig. 46 Axial, sagittal, coronal and 3D rendition of scans showing polymer in central lymphatics
Colour plates
Plate 1: Right subclavicular varicose lymphatics, lacking the bluish hue of varicose veins, in a patient with ME/CFS
Plate 2: Megalymphatics throughout the left breast of a 73-year-old long COVID patient
Plate 3: Disc magnets attracted to (a) forehead of patient and (b) upper/mid thoracic spine
Plate 4: The jigsaw puzzle analogy. Original design by Ophelia Grace 2023
Plate 5: Cross-section of the skull (top) and outer layer of the brain, showing the subarachnoid lymphatic-like membrane (SLYM)
Plate 6: Effects of gravity on the glymphatic drainage system
Chapter quotations
The quotations that open each chapter are all taken from: Carroll, L. (2016) Alice In Wonderland Collection: All Four Books. Los Angeles, CA: Enhanced Media.
‘Appreciation is a wonderful thing. It makes what is excellent in others belong to us as well.’
Voltaire
Thanks to my colleagues and all the amazing patients, plus their families and friends, who over the years have increased awareness of my work and raised most of the funds for my continued research. There have been so many kind donations and hundreds of wonderful people who have organised dinners, dances and musical evenings, jogged hundreds of miles, climbed mountains, cycled in cartoon outfits, walked in deep-sea diver suits, swum lakes and kayaked down mountain rivers, all to help pay the costs for the previous and ongoing scientific studies that are needed to further understand how the Perrin Technique™ can help the millions of sufferers of ME/CFS, fibromyalgia and now long COVID.
Thanks to my clinical team in Manchester, Bushey and Chalfont, Ian Totter, Sylveen Monaghan, Antoinette Atuah, Sophie King and Rakhee Mediratta. The clinic and all the work that goes on behind the scenes is run by the most important person in the practice, Elaine Coleman, who has been the most amazing practice manager for the bulk of the years I have been treating ME/CFS.
To Liv McDonald with support from Jess Stafford who are the most helpful and necessary support for the increasing worldwide network of licensed Perrin Technique™ practitioners. Thanks to Liv for the illuminating monthly practitioner newsletter sent out to all corners of the globe and her ever-expanding role as VP Perrin Technique™ Global which includes international patient liaison officer for the Perrin Technique™. Liv also brilliantly narrated the self-help guide which featured patients Georgia Morrey and Clark Geden, thanks to them all for a perfect job and to director Jonathan Rose plus his film crew for their skilful production.
A special thanks to the past and present trustees of the Fund for Osteopathic Research into ME (FORME Trust) for all their continuous help and support with my long COVID projects especially the Chair, Bev McDonald, and past and present treasurers Tina Rushton and Mags Connoly-Park, and practitioners xviii Laurent Heib and Ian Trotter.
An extra special mention for the amazing Dr Ruby Tam, DO in Minneapolis who has established the world’s first charity-funded free clinic offering the Perrin Technique™, and profound appreciation for the continuing incredible fundraising efforts of Perrin Technique™ practitioner Sue Capstick and her team of physiotherapists, friends and family who annually take part and offer treatments for the runners in the Wigan 10 k event.
Thanks again to my most wonderful publisher Georgina Bentliff, and her excellent team at Hammersmith Health Books, especially the most diligent editor Carolyn White, who has again helped turn my scientific ramblings into a readable book.
My utmost gratitude to a rising star in functional medicine, Yassine, for helping promote my work in the scientific and medical world and for his beautiful foreword for this book.
Thanks to my new American friends Catherine, Leslyn, Matt, Siobhan, Gail, Jen and Kelly of Lipedema Simplified and The Lipedema Project for their knowledge and resources in helping me unlock the mysteries of these and other central lymphatic disorders.
Thanks also to my magnificent research team at The University of Manchester, Adrian Heald, Mark Hann and Lisa Riste who went above and beyond the call of duty to complete our long COVID study with the NHS on time and within budget. Also, a very special thanks to Lisa for her help in keeping the self-help advice intelligible and for her beautiful poem at the beginning of this book, plus a special mention and thanks to Chris for all you have done and plan to do in the future in helping me reach my goals.
Thanks also to Dr Lewis Bass DO for his gift of neodymium magnet discs and patient advocate Catherine Vandome who suggested that the magnets might identify metals in her body, which helped the new discovery of magnetic thoracic spines in many of my patients.
And last but not least, my family. Julie, I couldn’t have achieved anything without your love and support. To Jonny, Max and Josh I’m so proud of all that you have and will hopefully achieve in the future, and finally remembering my dearest mum and dad, resting together forever in peace.
Ray Perrin
My introduction to the Perrin Technique™ came through a patient undergoing treatment for long COVID. As a practitioner of functional medicine, my initial encounter with this condition wasn’t by choice but rather due to my own experience with it in late March 2020. Amidst the uncertainty surrounding long COVID during that time, I found myself revisiting my knowledge on effective approaches for post-viral infections, which I commonly address in my practice. However, I sensed a gap in my usual strategies utilised for conditions like ME/CFS or post-viral co-infections. Though I managed to regain some functionality, I still felt something was amiss. It wasn’t until my patient suggested the Perrin Technique™ that I decided to explore it further. Intrigued, I underwent my first session and soon realised its efficacy. While I had previously recommended lymphatic drainage or cranial osteopathy for toxin relief to my patients, the Perrin Technique™ offered a more comprehensive, evidence-based approach that proved highly effective in combating this debilitating condition. It has since become an indispensable tool in my arsenal of therapies for long COVID.
Dr Perrin draws upon over 30 years of research and clinical expertise in managing and treating conditions like ME/CFS and post-viral syndromes, sharing his insights in his latest book. His foresight into the post-viral syndrome following SARS-CoV-2 infection was evident in a letter he sent to the Medical Hypotheses journal in March, 2020, entitled: ‘Into the Looking Glass: Post-viral Syndrome Post COVID-19’. This letter, eventually published in June 2020, forms the backbone of his book.
Dr Perrin’s book includes a clear and engaging exploration of the Perrin Technique™, laying the foundation for readers with essential concepts that will guide them through other chapters. Each chapter is enriched by a compelling, real-life patient account, offering invaluable insights into their journey to recovery with the Perrin Technique™. In the initial chapters, Dr Perrin elucidates the complexities of long COVID, the significance of detoxification, and the progressive stages leading to this condition. This pivotal account often sparks moments of revelation for readers, providing answers to the perplexing question: ‘Why me?’xx
Chapter 4 marks a turning point, as readers gain a deeper understanding of the interplay between the glymphatic system, toxin accumulation and the role of the hypothalamus. Dr Perrin then introduces the 10-step Perrin Technique™ (page 105), tailored for Perrin-trained practitioners, alongside self-massage techniques for patients to utilise between treatments (Chapter 7: Self-help advice). This chapter serves as a practical roadmap toward recovery, offering both professionals and patients alike invaluable tools for managing long COVID effectively.
In Chapter 5, informed by what Dr Perrin calls the ‘jigsaw puzzle analogy’, he paints a vivid picture of the road to recovery using this useful metaphor. He illustrates how various techniques contribute to rebuilding this jigsaw puzzle piece by piece, with the Perrin Technique™ forming the essential edges. Additionally, he outlines methods for scoring patients based on their symptoms and presentation, providing a comprehensive framework for treatment.
Chapter 8 explores additional strategies for managing long COVID, including a discussion of alternative approaches that may prove successful.
In the final chapter, Dr Perrin offers a compelling summary, providing readers with a glimpse into the real-life experience of a patient with long COVID over a 24-hour period. He also shares occupational strategies that can prove beneficial, as well as cautioning which measures to avoid, offering valuable insights for navigating life with long COVID.
Overall, this book serves as a beacon of hope for patients and practitioners alike seeking to understand long COVID and the Perrin Technique™. It is rich with information supported by the latest research, appealing to both academic and curious readers alike. With its detailed approach, it provides a roadmap for overcoming this often misunderstood and debilitating condition.
Dr Yassine Bendiabdallah MPharm, PhD, IP, ABAAHP, FAAMM
Co-Founder of ZEN Healthcare, London
Dr Yassine Bendiabdallah is a Functional Medicine Specialist celebrated for his expertise in Longevity, Bio-identical Hormone Replacement Therapy (BHRT), and Post Viral Fatigue Syndrome (PVFS).
With a background as an anticancer research scientist at Cancer Research UK at University College London, Dr Bendiabdallah has gained numerous accolades xxiand has made significant contributions to peer-reviewed academic journals. His clinical focus encompasses personalised nutrition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), longevity strategies and hormonal optimization therapies.
As the co-founder of ZEN Healthcare, a leading health and wellness centre with multiple locations across London, Dr Bendiabdallah currently serves as the Medical Director. In this role, he oversees a comprehensive, integrative approach to holistic healthcare.
Raymond N Perrin dophd is a Registered Osteopath and Neuroscientist specialising in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). His present academic posts include Honorary Clinical Research Fellow at the School of Health Sciences in the Faculty of Biology, Medicine and Health at the University of Manchester, Manchester, UK and Honorary Senior Lecturer in the Allied Health Professions Research Unit, University of Central Lancashire, Preston, UK. He is also Research Director of the FORME Trust and Founder and Clinical Director of the Perrin Clinic™.
Treating a patient for backpain in 1989 led him to the concept that there was a structural basis to ME/CFS. He has spent over 35 years conducting clinical trials, researching the medical facts and sifting the scientific evidence while successfully treating an increasing number of ME/CFS, fibromyalgia and long COVID sufferers and teaching fellow osteopaths, chiropractors and physiotherapists the fundamentals of the Perrin Technique™.
For his service to osteopathy, Dr Perrin was appointed a vice-patron of the University College of Osteopathy (formerly the BSO) and in 2015 became the very first winner of the Research and Practice Award from the Institute of Osteopathy.
Dear Reader,
This is a guidebook to aid practitioners in the treatment of long COVID and to help practitioners and sufferers to understand what is going wrong with their body and how they can help fight this complex, cruel disorder.
The theories and techniques explained in this book are all based on a doctorate, which I received after 11 years of clinical research into post-viral fatigue syndrome more commonly known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at the University of Salford, UK. What these theories and techniques are can be found in Chapter 4.
Since 2005, I have continued my post-Doc research at the University of Central Lancashire and the University of Manchester, UK. I have also been kept busy lecturing to the medical and scientific world on the lymphatic system of the brain and how it is disturbed in ME/CFS and fibromyalgia, plus teaching my techniques to those who wish to learn my approach. Since 2020 I have included long COVID in my work.
Teaching my theories wasn’t easy in the beginning, as there was no proof that a lymphatic system of the brain even existed in the first place, never mind any problems with its drainage. Everything changed in 2012, when there was a breakthrough discovery at the University of Rochester in New York State.
Scientists, using a new type of brain scan, were able visually to show that the fluid in the brain did indeed drain into the lymphatics, and in 2015 a group from the University of Virginia discovered true lymphatic vessels lining the brain in mice. Finally, after so many years, the foundation of my main theory as to what was going wrong in patients with ME/CFS was being backed up by scientific discovery… albeit in rodents. It was then that I started writing the second edition of my first book – called simply The Perrin Technique - and during that writing process, further scans of human brains have revealed a major system of lymphatic drainage of the central nervous system which may, according to scientists around the world, provide a pathway that is affected in many neurological disorders, xxivincluding long COVID. I developed the Perrin Technique™ in 1989 to improve this drainage system, so it is nice to know that finally science has caught up.
11 March 2020
Most of us won’t forget this date. If your illness has affected your memory, and it often does, this was the day the World Health Organization’s Director-General, Dr Tedros Adhanom Ghebreyesu, declared the novel coronavirus (COVID-19) outbreak a global pandemic. It was also the day of my 21st wedding anniversary. Most normal people don’t spend their anniversary writing a letter to their research colleagues predicting long COVID. Fortunately, my wife Julie understood that I had to get the warning out there and so I wrote a letter to be published in a journal with my theories. This was aptly given the title by my research colleague, NHS consultant Dr Adrian Heald, ‘Into the looking glass: Post-viral syndrome post COVID-19’.
My research colleagues and I warned the international medical community that in the aftermath of COVID-19 there would be millions around the world affected with what we christened ‘Post COVID-19 syndrome’. The letter was subsequently published in June 2020 in the international scientific journal Medical Hypotheses.
Unfortunately, we were right about the conservative estimate. As I finish this book there are 65 million people worldwide with the syndrome, and probably millions of others left undiagnosed. Luckily for many, I had developed the Perrin Technique™ in 1989 to improve the lymphatic drainage system, so practitioners trained in this technique have been able to help thousands of long COVID sufferers around the world since the early days of the pandemic. Also on the plus side, there have been hundreds of scientists citing our paper in major international journals, with at least one new paper a week quoting our vision of the future we now know is all too real. Due to our work and the research of many others, the governments, scientists and health authorities around the world have started to seriously look into this disorder and other conditions such as ME/CFS as major neurological diseases.xxv
For patients
In the Autumn of 2022 my publisher, Georgina, asked me to write a book on long COVID. Although much of this book is aimed at clinical and medical researchers and practitioners, some sections will hopefully guide you, the patient, along your own individual road to recovery:
If you have long COVID and are unable to concentrate sufficiently to read long sections of text, the first section of Chapter 4 is for you, as it sums up my theory of diagnosis and treatment of this complex disorder.The Appendix on frequently asked questions also provides a quick guide to treatment.If you have a little more energy, then the self-massage and home exercise routines in Chapter 7 will be helpful and can also be viewed online in a step-by-step video guide available on YouTube and via the link at www.theperrintechnique.com.However, you should not just rely on the self-massage and exercises in this book, though it is very important that you do these, as they will definitely help. It is always best to do the whole treatment programme under the direction of a qualified practitioner to confirm the diagnosis and to improve your outlook.
If you wish to start having treatment with the Perrin Technique™, please try to find a practitioner near to you who is a trained and a licensed Perrin Technique™ practitioner if possible. If there are none in your neighbourhood, seek out a practitioner trained and experienced in both cranial techniques and manual therapy. They should be able to follow the treatment instructions and be equipped to help you.
If your condition is more complicated, then a multidisciplinary approach including help by your Perrin Technique™ practitioner should be useful in even the most complex presentations.
I wish you every success with your treatment and progress to better health.
Ray Perrin
July 2024
I’ll never know what happened, I was full of energy and life
Now I’m this drained carcass, Who’s of no use to my wife
One day my ‘joie de vivre’, It just got up and left
So now I’m sitting here, feeling shattered and bereft
I battled with ‘the virus’, I should be lucky to be alive
But it’s left me feeling guilty, With a bruised and dented pride
I try to rest whenever I can, and I try not to ‘overdo’
But some jobs still need doing, but it’s rare I’m tempted to
My poor old legs feel weak, as if they’re made of lead
When I need to go upstairs, I have to lie down on the bed
My body just feels beaten, my muscles and joints all ache
But once I pop, I cannot stop, I hope you can relate?
My digestion too is failing, I’m bloating all the time
I hate to discuss my bowels, but find I do it all the time
Some days my heart beats faster, I fear I’m going to die
I try to sit down and be calm, I really, really try
They’ve sent me for appointments, had many scans and tests
But I just seem to baffle them, and the best of the NHS
They tell me it’s ‘long COVID’, That in time I will recover
But getting through each day, It’s getting hard to bother
All my energy has been depleted, It’s not ‘all in my head’
There’s an army of people like me, 2 million or so I’ve read
I need to be a little kinder, to celebrate each small success
Pray the good times soon extend, and bad days get much less
©Dr Lisa Riste
Chapter 1
‘Poor Alice! It was as much as she could do, lying down on one side, to look through into the garden with one eye.’
Lewis Carroll
Alice’s Adventures in Wonderland, p. 13
Case: Iain’s story
At the end of January 2023 I burst into tears as I opened the front door of Perrin’s Corner and stepped outside. Dr Perrin had just declared it to be ‘D-Day’. I was finally discharged. What I hadn’t been consciously aware of until the tears gave me away, was that I had spent a long time uncertain that I would ever be well again.
I caught COVID-19 in April 2020. I had a bit of a sore throat and a headache. I hadn’t suffered any problems with taste, smell or breathing and felt that I had got off lightly. I was finding my daily duties of caring for my young adult daughter, who suffers with ME/CFS and fibromyalgia, increasingly difficult. I was spending more and more time either in bed or on the sofa. Another 2daughter couldn’t manage to go to work and joined me on the sofa where, on a good day, I got to experience her favourite Netflix shows. On a bad day, even watching TV was too much for me. I couldn’t cook, I could read very little, I couldn’t go out and see anyone or run errands, even conversation was difficult. I would be knocked out for a few hours if I spoke to my parents on the phone. Eventually, my wife connected the dots and had a conversation with the man treating our youngest for ME. A trip to see Dr Raymond Perrin revealed that I had post-COVID fatigue, as did my eldest and middle daughters.
You may remember that shopping involved queueing and going one way around the shop and scrambling for toilet rolls … and I could be of no help whatsoever. My wife, Michelle, as well as working full time, had to deal with these extended domestic chores, doing all of the cooking and cleaning and massaging three of us every day. She would get up, work online, get our breakfast, go back into her office, stop to get us drinks, lunch, do the shopping, get dinner and then massage us all.
After a few months of being treated with the Perrin Technique™ in the clinic and at home I saw some improvement and could manage a short daily walk around the block. However, the progress was not in a straight line and I would plateau for several weeks at a time. It would be a joy to manage a few stretches and a longer walk, only to be unable to do them a few days later. I was constantly adjusting how long I thought it might take to get better and when I would be able to do more to support my family. My eldest and middle daughters were both back at work and discharged by Dr Perrin. I was still struggling physically, and the longer it went on, mentally.
Christmas came and went, with me doing next to nothing in the way of buying, wrapping, decorating and cooking.3
A year after starting treatment, I remember being able to drive for a couple of hours, taking my daughter and son-in-law across country to a festival. I dropped them off and drove another half an hour to a quieter place to camp. I had to lie down for an hour before putting up my tent. I did nothing that evening. I did nothing the next day, I was so tired. By the time I arrived back to pick up my daughter from the festival, I had needed 48 hours rest for one 2½-hour drive. Despite how drained I felt, it was a huge milestone for me, to have driven for so long.
I have so many memories of sitting in various chairs and on benches, unable to complete a walk or a simple task. I promised some shelves for my now well daughter who had managed to get back to work and move out of home. I remember gathering some tools and wood together outside, then, unable to continue, sitting for a couple of hours in a garden chair before packing it all away again.
Dr Perrin and his colleagues, fellow Perrin Technique™ practitioners, were a continual support, encouraging me and advising little tweaks and changes I could make along the way to improve my recovery. A year after that exhausting 2½-hour drive, I was well enough to commit to lengthier drives and eventually, in August to October 2022, I helped two friends by driving a support vehicle across the USA, from Philadelphia to Phoenix, while they cycled from New York to Los Angeles. At the beginning of the ride, I would be careful to manage my energy and take rests throughout the day. Six weeks into the ride, I realised I was no longer doing this. At last, I was capable of an average day without wearing myself out.
As I write this in January 2024, a year after I was discharged, I am still hearing, all over the country, of people who have not yet ‘got over’ COVID-19, but suffer with various ailments, but particularly with exhaustion. As I tell my story I am met with fascination and 4surprise, and occasionally scepticism. Two of my daughters got long COVID and were better after a few months of the Perrin Technique™. It took me a lot longer, a full 2½ years, but I too am better, and I no longer have to concern myself with conserving energy or worry that I won’t be able to manage something. For that I am grateful to Dr Raymond Perrin.
Iain Every, Ashton-under-Lyne, UKPatient of Dr Raymond Perrin
I mentioned in the Introduction the paper ‘Into the looking glass’, which I wrote with colleagues at the beginning of the pandemic in 2020.1 In this paper we named the disease ‘Post-COVID-19 syndrome’ as that was exactly what we predicted would happen, i.e. after patients had been hit with COVID-19, some would suffer from a long-term collection of symptoms (a syndrome).
According to a paper in October 2020 in the journal Social Science and Medicine2 the terms ‘long COVID’ – and ‘long-haul COVID’ – were collectively used by patients themselves in the first months of the pandemic. Patients, many with initially ‘mild’ illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than that originally announced by authorities. ‘Long COVID’ could actually be the first illness named through patients finding one another on social media platforms. Through various media this name reached formal clinical and policy channels in just a few months, in September 2020, with the paper ‘Long-haul COVID’ in the journal Neurology.3
The rest, as they say, is history, with at present over 2500 peer-reviewed articles on long COVID published across all sections of medicine since 2020. The term ‘long COVID’ is not used by all. The purists in the medical world 5use the more scientific term ‘post-acute sequelae SARS-CoV-2 infection’ or ‘PASC’.
The National Institute for Health Care Excellence (NICE) in the UK has classified the condition into two types:4
Ongoing symptomatic COVID-19 for people with symptoms continuing on for four to 12 weeks, andPost-COVID-19 syndrome for people who still have symptoms for more than 12 weeks.Long COVID patients have been classified by the International Classification for Diseases (ICD-10-CM) with a specific code: ‘Post COVID-19 Condition, unspecified’ (UO9.9)5 and ICD-11 code (RA02).6
The World Health Organization (WHO) defines long COVID as:7
‘a syndrome that occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath and cognitive dysfunction but also others’.
The Centers for Disease Control and Prevention (CDC) in the US define it as ‘new, persistent or evolving symptoms that are present four or more weeks after the initial infection’.8
But by far the simplest definition is stated in The Long COVID Handbook by Gez Medinger and Professor Danny Altman:
‘long COVID is a long-term consequence of SARS-CoV-2 infection lasting beyond the initial ‘acute’ phase affecting multiple bodily 6organs and systems causing a huge variety of symptoms and of varying severity and duration, potentially relapsing and remitting over time’.9
The Office of National Statistics (ONS) in the UK estimated 1.9 million people living in private households in the UK (2.9% of the population) were already experiencing long COVID symptoms three years after the epidemic hit the UK (March 2023).10
Alas, at the time of writing this book, patients with long COVID suffer the same stigmas and barriers to proper healthcare as was, and still is, the case for many patients suffering from ME/CFS. The problem is that long COVID symptoms are difficult to distinguish from a wide range of other conditions (see Chapter 2 for a detailed discussion).
To try and address this issue, some questionnaires have been developed by clinical research scientists specifically for long COVID, such as the Symptom Burden Questionnaire™ for long COVID (SBQ™-LC) developed by Sarah Hughes and colleagues at the University of Birmingham. This is a patient-reported outcome measure examining a comprehensive list of most symptoms complained of affecting all organs and bodily systems.11
One of the leading researchers into diagnostic evaluation of ME/CFS is Professor Lenny Jason who, together with his colleagues at De Paul University in Chicago, has spent many years developing the internationally-recognised De Paul Questionnaire for ME/CFS and has been equally busy looking at ways of accurately classifying long COVID.12
However, as time goes on, many patients who have suffered long COVID symptoms for two or three years have developed more and more long-term symptoms which match those of patients with ME/CFS and which fulfil the international consensus criteria for ME/CFS.13
At just the time I was working on the final rewrites for this book, on 11 June 2024, the United States National Academies of Sciences, Engineering and 7Medicine (NASEM) hosted a webinar which proposed a new definition for Long COVID. This followed a US government request that the National Academy of Medicine (NAM) convene a committee to examine and update existing US definitions based on the latest scientific evidence, testimony from medical and scientific professionals, and input from patients and the public. The NAM Committee was chaired by Physician Dr Harvey V Fineberg, who is a noted researcher in the field of health policy and emeritus Dean of the Harvard School of Public Health.
One of the members of the committee was the International Association of CFS/ME Vice President, Lily Chu, MD. I have had the pleasure of knowing Lily for over 15 years as a member of the Association and of presenting my research work at the IACFS/ME conferences since 2009.
The following is a summary of the key findings of the Committee:
Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.It manifests in multiple ways. A complete enumeration of possible signs, symptoms, and diagnosable conditions of LC would have hundreds of entries. Any organ system can be involved, and LC patients can present with: single or multiple symptoms, such as: shortness of breath, cough, persistent fatigue, post exertional malaise, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.single or multiple diagnosable conditions, such as: interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, anxiety, migraine, stroke, blood 8clots, chronic kidney disease, postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), fibromyalgia, connective tissue diseases, hyperlipidemia, diabetes, and autoimmune disorders such as lupus, rheumatoid arthritis, and Sjogren’s syndrome.Important features include: It can follow asymptomatic, mild, or severe SARS-CoV-2 infection. Previous infections may have been recognized or unrecognized.It can be continuous from the time of acute SARS-CoV-2 infection or can be delayed in onset for weeks or months following what had appeared to be full recovery from acute infection.It can affect children and adults, regardless of health, disability or socioeconomic status, age, sex, gender, sexual orientation, race, ethnicity or geographic location.It can exacerbate pre-existing health conditions or present as new conditions.It can range from mild to severe. It can resolve over a period of months or can persist for months or years.It can be diagnosed on clinical grounds. No biomarker currently available demonstrates conclusively the presence of LC.It can impair individuals’ ability to work, attend school, take care of family and care for themselves.It can have a profound emotional and physical impact on patients and their families and caregivers.Long COVID affects the communication between the internal organs and the musculoskeletal components of the body. This organ of communication is known as the sympathetic nervous system which may be likened to a transmission station in a power grid.9
In our homes and at work, we use electricity for lighting, cooking, refrigerating and freezing, for electrical appliances, and for music centres, TVs and computers. The electrical energy required is produced by power stations and is monitored by controllers in transmission stations, which channel the amount of electricity through to us, the consumers.
If we were all suddenly to use substantially more electricity, simultaneously, the transmission station would allow more electricity to flow, signalling to the power stations to produce more energy. This occurs, for example, at half-time during major international televised sporting events, when everybody turns on the kettle at the same time to make a cup of tea.
If something were to go wrong with the operator, or the equipment in the transmission station were to develop a fault, the power required to cope with the increased demand would be insufficient. This would eventually lead to a power cut and blackout. Alternatively, if a situation were to arise when too much electricity passed into the household’s supply, an overload or power surge could damage the appliances in use at that time.
In the body, the brain and the muscles are the principal ‘electrical appliances’, utilising most of the energy produced. The power station of the body is the gastrointestinal system (gut), together with the respiratory system, which consumes fuel in the form of food together with oxygen to produce the energy.
The sympathetic nervous system is the transmission station, which connects the visceral ‘power station’ of the body to the neuro-musculoskeletal ‘appliance’.
To understand this more clearly, first here are a few facts that you need to know about the nervous system.
The nervous system can be divided into the central and peripheral systems. The central nervous system consists of the brain and the spinal cord, the peripheral system, which spreads out to the rest of the body, is further subdivided into the somatic and the autonomic nervous systems.10
The somatic nervous system is associated with the voluntary control of body movements via motor nerves controlling the skeletal muscles plus sensory nerves receiving information from all over the body. The autonomic nervous system, on the other hand, regulates a variety of body processes that take place without conscious effort, as described in further detail in Chapter 2.
The autonomic nervous system is further divided into separate systems. The main one related to long COVID is the sympathetic nervous system, which makes the body ready for the ‘fight or flight’ response during any impending threat, as described on page 94. On the other hand, the parasympathetic nervous system inhibits the body from overworking and restores it to a calm and composed state and, until recently, was never thought to be a major factor in the disease process, unlike the sympathetic nerves. However, due to new findings, especially through the work of Dr Stephen Porges who in 1994 introduced his controversial ‘polyvagal theory’, we now know different. Dr Porges has discovered that there are not just two components to the autonomic nervous system, but in fact the main parasympathetic pathway is divided into two sections, front (ventral) and back (dorsal). The ventral vagus is a signalling system for motion, emotion and communication which forms our social engagement system; this is the part of the vagus nerve that is well known.15
The dorsal vagus in humans is a more recent discovery. It is a remnant of our primitive ancestry and is advanced in reptiles and possums, which use it when they play dead as a defence mechanism. It is the immobilisation system, which is our passive defence system and, if overstimulated, can lead to pathological mechanisms that cause symptoms such as bradycardia (extremely slow heart rate) and sleep apnoea, when some sufferers stop breathing for a dangerously long time in their sleep.
Many anatomists and scientists don’t believe that the dorsal vagus exists in humans but I’m a fan of Dr Porges’ work and I feel that both front (ventral) and back (dorsal) vagus nerves can be affected biomechanically by problems in the suboccipital region at the very top of the neck, and so this is an important 11region to examine and treat in some long COVID patients. Improving spinal movement and stability in this region between the top of the neck and the head can help balance the overall autonomic control.
The vagus nerve transmits signals from the body to the central nervous system when stimulated by cytokines (cell signalling chemicals), basically telling the brain that you are sick. Eighty per cent of these sensory vagal nerves have their nucleus in the brain stem. When peripheral cytokines stimulate the vagus there is a mirror response within the brain, leading to increased inflammatory cytokines being produced by the glial cells (explained on page 96).
Dr Kevin J Tracey, a neurosurgeon, and his team of scientists in Manhasset, New York, discovered that the vagus nerve, as well as conducting information from organs to the brain and back again, also modulates inflammation around the body, reducing the production of pro-inflammatory cytokines. Tracey showed that immune responses are controlled by autonomic reflex circuits similar to how the heart rate is controlled. He named this circuit the ‘inflammatory reflex’.
Electrical implants that stimulate the vagus nerve have been used to treat conditions such as epilepsy. So, Tracey and his team used vagal nerve stimulators implanted through a small incision in the neck that turned off cytokine responses, improving symptoms of patients with rheumatoid arthritis by reducing the inflammation.16
There are also gateways in the spinal cord regulated by local sympathetic nerve activations that are stimulated by gravity. Pain, which increases the number of cytokines, attracts T-helper immune cells to the dorsal vessels, which pass into the central nervous system, through the blood–brain–barrier to infiltrate the central nervous system and trigger neuroinflammation.12
This process is known as the ‘gateway reflex’ and is activated by stress, which acts on the paraventricular nucleus in the hypothalamus, leading to neuroinflammation in the brain. It has also been shown that, by electrically stimulating certain muscles, neuroinflammatory gateways are created at different levels of the spinal cord.17
A neuroscientist at Harvard University, Mike Van Elzakker, also believes neuroinflammation irritating autonomic control in the brainstem is a main part of the process leading to many neuroimmune disorders.18 He classifies diseases similar to long COVID (such as ME/CFS) as auto-inflammatory disorders, where the crosstalk between the glial cells (see page 96) that surround the vagus nerve and the mast cells that produce inflammation-inducing chemicals such as cytokines, prostaglandins and the tumour necrosis factor-alpha (TNFα), further activate the vagus. This can lead to an auto-inflammatory condition when there is an ongoing inflammatory process without any pathogen to cause it (such as the corona virus that triggered the cytokine storm in the first place will have been long gone).
The vagus nerve also detects changes in the innate immune system that will occur whenever there is an infection causing a sickness response, such as a fever, helping to kill off viruses or bacteria that cannot survive at a higher body temperature.
When we are active, the sympathetic nervous system stimulates an increase of energy production and a release of stored energy. If this is not accomplished, the result is that the brain and muscles will not receive the nutrients normally obtained from the blood, and the natural function of the muscles, nerves and joints will break down. There will be a power cut in our body, and we will suffer fatigue.
This is precisely what occurs in patients suffering from long COVID. The 13body demands more energy, especially when under any form of stress, mental or physical. However, the mechanism which normally operates to transform the stored energy into a usable form is not functioning, and thus the patient’s body simply stops working effectively.
It is therefore not surprising that in many cases long COVID is a profoundly debilitating disorder and requires as much rest as possible to reverse the process by minimising the amount of stress on the body. The power station analogy explains why some sufferers seem to display signs of too much sympathetic activity, such as palpitations and excessive sweating, as well as reduced sympathetic activity, such as fatigue and low blood pressure. The fault with the ‘transmission station’ could lead to the body working in overdrive as well as the power cut scenario, and sometimes in the same patient at the same time. Reducing the demand on the sympathetic nervous system helps the patient onto the road to a full recovery.
Long COVID is very similar to ME/CFS and FMS, all of which are due to a disturbance of the sympathetic nervous system which causes an imbalance of overall body functions leading to the many symptoms seen in these disorders. What happens next forms the basis of my 35 years’ work in this field.
Just like Alice, when she went through the looking glass and found that everything was working upside down and back to front, as we pass through the looking glass of long COVID together, we will see that the sympathetic nervous system’s control of the lymphatic system is disturbed, leading to a reversal of some of the lymphatic drainage of the brain, spinal cord and the rest of the body. This causes the neuro-inflammation and other effects of neurotoxicity that are affecting millions upon millions around the globe.
As you will see, knowing what happens through the looking glass has enabled me to develop aids to diagnosing and methods of treating long COVID, which all form part of the Perrin Technique™.14
1. Perrin, R., Riste, L., Hann, M., Walther, A., Mukherjee, A. and Heald, A. (2020) ‘Into the looking glass: post-viral syndrome post COVID-19’, Med. Hypotheses, 144:110055. DOI: 10.1016/j.mehy.2020.110055
2. Callard, F., Perego, E. (2021) ‘How and why patients made Long Covid’, Soc. Sci. Med., 268:113426. DOI: 10.1016/j.socscimed.2020.113426
3. Nath, A. (2020) ‘Long-haul COVID’, Neurology, 95(13): pp. 559-560. DOI: 10.1212/WNL.0000000000010640
4. NICE (2020, updated 2024) COVID-19 rapid guideline: managing the long-term effects of COVID-19. NICE guideline [NG188]. Available at: https://www.nice.org.uk/guidance/ng188 (Accessed: 2 May 2024).
5. Centers for Disease Control and Prevention (CDC) (2023) International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Available at: https://www.cdc.gov/nchs/icd/icd-10-cm.htm (Accessed: 2 May 2024).
6. International Classification of Diseases (2024) ‘RA02 Post COVID-19 condition’, ICD-11-CM. 11th edn. Available at: https://icd.who.int/browse/2024-01/mms/en#2024855916 (Accessed: 13 May 2024).
7. The World Health Organization (WHO) (2024) Post COVID-19 condition (Long COVID). Available at: https://www.who.int/europe/news-room/fact-sheets/item/post-COVID-19-condition (Accessed: 2 May 2024).
8. US Department of Health and Human Services (2024) Long COVID or Post-COVID Conditions. Available at: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html (Accessed: 13 May 2024).
9. Medinger, G., Altman, D. (2022) The Long Covid Handbook, London: Penguin Random House, p. 7.
10. Office for National Statistics (ONS) (2023) Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK, 30 March. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/
11. Hughes, S.E., et al. (2022) ‘Development and validation of the symptom burden questionnaire for long covid (SBQ-LC): Rasch analysis’, BMJ, 377: e070230. 296DOI: 10.1136/bmj-2022-070230
12. Jason, L.A., Islam, M.F. (2022) ‘A classification system for Post-Acute Sequelae of SARS CoV-2 Infection’, Central Asian Journal of Medical Hypotheses and Ethics, 3(1), pp. 38–51.
13. Carruthers, B.M., van de Sande, M.I., De Meirleir, K.L. et al. (2011) ‘Myalgic encephalomyelitis: international consensus criteria’, J. Intern. Med., 270(4): pp. 327–338. DOI: 10.1111/j.1365-2796.2011.02428.x
14. Fineberg, H.V., Brown, L., Worku, T., Goldowitz, I (Eds) et al. The 2024 NASEM Long COVID Definition. National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; 11 June 2024. https://nap.nationalacademies.org/resource/27768/Long_COVID_Definition_Highlights.pdf (Accessed 8 July 2024)
15. Porges, S.W. (2009) ‘The polyvagal theory: New insights into adaptive reactions of the autonomic nervous system’, Cleve. Clin. J. Med., 76(Suppl 2), pp. S86–S90. DOI: 10.3949/ccjm.76.s2.17
16. Tracey, K.J. (2007) ‘Physiology and immunology of the cholinergic anti-inflammatory pathway’, J. Clin. Invest., 117(2), pp. 289–96. DOI:10.1172/JCV130555
17. Tanaka, Y. et al. (2017) ‘The gateway reflex, a novel neuro-immune interaction for the regulation of regional vessels’, Front. Immunol., 8, p. 1321. DOI: 10.3389/fimmu.2017.01321
18. Proal, A.D. and Van Elzakker, M. (2021) ‘Long COVID or post-acute sequelae of COVID-19 (PASC): an overview of biological factors that may contribute to persistent symptoms’, Front. Microbiol., 23, p.12:698169. DOI: 10.3389/fmicb.2021.698169
Chapter 2
‘I don’t think they can hear me’ she went on, as she put her head closer down ‘and I’m nearly sure they can’t see me. I feel somehow as if I were invisible.’
Lewis Carroll
Alice Through the Looking Glass and What Alice Found There, p. 89
Case: Kate’s story
I contracted COVID-19 in March 2022 for the first time, during the Omicron wave. I’d been vaccinated and boosted, and at that point was a fit and active 48-year-old woman. My acute phase was mild, and I felt well enough after a few weeks to return to work and exercise. On a short, gentle run in early May I had the sensation of suddenly being out of energy and had to walk home. After that, my decline into the hell of long COVID was quick. In late May I had to take medical leave from my job as a university lecturer. My brain was unable to cope with work and I was increasingly fatigued. By the end of the summer, I was mostly housebound – a short walk would bring on post-exertional malaise, I felt 16breathless, sleepless and in terrible back, neck and shoulder pain. I was experiencing unusual anxiety and low mood. At my sickest, I had to travel to the US for my father’s funeral and a friend had to check me and my daughters in for our flights as my brain fog was too bad for me to do it.
Nobody knew much about long COVID, but I had friends with ME/CFS and I understood that’s what it seemed like. The NHS was helpful up to a point, but the long COVID clinic was limited to managing symptoms and there seemed to be no known effective treatment. I felt very isolated. Caring for my kids as a single mother was overwhelmingly difficult, and I was scared about the future.
A friend told me about the Perrin Technique™, which he credited with curing his ME/CFS. Very luckily for me, Dr Perrin’s clinic was a 20-minute drive away – even that was a challenge, but I dragged myself there. On that first visit in October 2022, my osteopath, Ian Trotter, found that I fitted the diagnostic criteria for ME/CFS and explained how the Perrin Technique™ could help. I committed to a regime of regular sessions at the clinic, daily rotation exercises and self-massage. I was told that if the treatment worked for me, I could expect something like full recovery in 18 months.
It’s now December 2023 – 14 months later. Though my treatment is still ongoing, I feel like a different person. There are other things I’ve done alongside the Perrin treatment that have helped – breathwork, meditation, hormone treatment, rest and stress reduction – but the Perrin Technique™ has been fundamental and transformative. I went back to work on a phased return three months ago and am about to return to my full, in-person teaching schedule. I can do so many things that I was scared I wouldn’t ever be able to do again: I can work a full day (with a few rest breaks), drive on the motorway, walk outside for about 45 minutes and swim slow lengths. I can do gentle rehabilitation exercises with a 17physical trainer without being wiped out afterwards. I can go out for drinks with friends, see concerts and plan holidays. My moods are more stable, and I have a more consistent baseline of energy to draw upon every day, though I still have to be mindful of my resources and not overtax myself. I don’t feel like a sick person anymore. I feel like someone who is able to enjoy her life, with a few reasonable adaptations. I’m so happy with the progress I’ve made, and I feel hopeful about the future.
Kate Feld, Ramsbottom, UK.Patient of osteopath and licensed Perrin Technique™ practitioner Ian Trotter
It is generally agreed that long COVID is a serious chronic condition following infection with the COVID-19 virus, where symptoms persist for more than three months.1
According to the UK’s National Health Service website information page, the most common ongoing symptoms are: ‘Extreme tiredness (fatigue), feeling short of breath, problems with memory and concentration (‘brain fog’), heart palpitations, dizziness, joint pain and muscle aches’. Before we look at how the condition becomes chronic, let’s look at all these, and other symptoms mentioned in the NHS list, in the light of what we know about the underlying problem here – dysfunctional lymphatic drainage from the central nervous system.
Once you have read this book, long COVID and its symptoms should no longer be a mystery. By understanding the mechanisms that cause this disorder (see Chapter 4) one can logically explain all the varied symptoms that patients suffer. Over the past four years, many patients have asked me whether a 18particular symptom could be due to their long COVID; I have gone through the NHS list to try to answer those questions.