Screening of Voices from the Shadows and discussion

Date: Thursday 24th May 2012
Time: 2pm
Venue: Cineworld, 130 Dundee Street, Edinburgh, EH11 1AF (see map below)

Click here to view/download a promotional poster for the screening.

View Cineworld in a larger map

This one hour documentary is compelling and intensely moving and unveils the reality of people with M.E and their carers.

Followed by a Q&A session with eminent researchers and medics working in the field of M.E.

Admission free. Donations welcome. Refreshments will be provided.

To reserve your place, contact book@edmesh.org.uk or phone 0845 625 2025.

Please note that this event is not suitable for children.

To learn more about the film, visit http://voicesfromtheshadowsfilm.co.uk/

Travel information:

By bus: Lothian Buses 1, 34 and 35 stop in Dundee Street. Buses no. 22 and 30 stop on the Western Approach Road – there is an entrance to the Fountain Park complex (of which Cineworld is a part) on the south side of the road.

By car: Fountain Park is accessible from Dundee Street (entrance by Pizza Hut). There is a drop-off area by the cinema. Car parking is accessible from this entrance, or the one in the Western Approach Road. Car parking is charged at £3.30 for up to 4 hours, but you can park for up to 4 hours for free by validating your parking ticket at a machine in the Cineworld cinema – ask a member of staff to show you how to do this.

Please contact us in advance at book@edmesh.org.uk or 0845 625 2025 if you would like to attend and require a lift to the cinema.

The Scottish Good Practice Statement on ME-CFS was published by NHS Scotland in September 2010. It includes a very useful guide for patients called “What someone should know if they or their doctor think they might have ME-CFS”.

Ask your doctor or other health professional for a copy of the Patient Guide, or download it for yourself:

from the edmesh website (here)

or at http://www.show.scot.nhs.uk/App_Shared/docs/PatientGuide.pdf.

The Scottish Good Practice Statement on ME-CFS itself is available to download from here.

I don’t need someone to tell me how easy it can be
To climb a two-inch mountain or remember how to breathe
I don’t need more motivation or the guts to take a chance
But I could use someone to hold me and teach me how to dance

When I gaze out of my window and look through my tiny sky
I can hear faint voices calling from a life that’s passing by
I may accept your invitation and turn up looking swell
But keeping up appearances does not mean all is well

You think my social life is booming from the time I have for you
But my fast receding circle has become a precious few
And if at times you feel frustrated by my need to plan ahead
It’s the lack of spontaneity that keeps me out of bed

The indications are confusing from any point of view
But each thing I do requires much more than it would from you
All I ask is understanding and belief in what I say
Your ill-informed dismissals won’t make this go away

I’ve got more life than I can cope with sitting on this weary shelf
Locked inside a shell that can’t reveal my inner self
I know now not to fight it and I will reverse the trend
The only way to live with ME is to be my own best friend.

© Dot Fall, October 2007.
Used with permission.

To join edmesh and get access to the library, please visit our Join page.

This list was correct as of Spring 2012.

Books

AMAND, R Paul St MD & MAREK, Claudia Craig – What your Doctor may NOT tell you about Fibromyalgia: The revolutionary treatment that can reverse the disease
ANDREW, Sarah (ed.) – A Silver Lining
ARBER, Martin – The Joke’s On M.E.
BALL, Nigel & HOUGH, Nick – The Sleep Solution
BAMFORTH, Nick – M.E. (Chronic Fatigue Syndrome) and The Healer Within
BARNARD, Neal MD – Foods that Fight Pain
BARTON, Alexandra – Recovery From CFS: 50 Personal Stories
BECKER, Robert O & SELDEN, Gary – The Body Electric: Electromagnetism and The Foundation of Life
BERNE, Dr Katrina – Running On Empty
BESTED, Alison C. & LOGAN, Alan C. – Hope And Help For CFS and Fibromyalgia
BIGELOW, Stacie L MA – Fibromyalgia: Simple relief through Movement
BLACK’S Medical Dictionary 40th Edition – Edited by Gordon Macpherson MB, BS
BRADLEY, Dinah – Hyperventilation Syndrome
BRIGGS, Margaret – Vinegar: 1001 Practical uses
BROSTOFF, Dr Jonathan & GAMLIN, Linda – Food Allergy and Intolerance
BRUMFITT, Jan – The Final Surrender: A Journey to Wellness
BRUNO, Dr Richard L. – The Polio Paradox
BUDD, Martin ND DO – Why Am I So Tired
BURNS, David – The Feeling Good Handbook (CBT & Anti-depressants)
CANNON, Geoffrey & ENZIG, Hetty – Dieting Makes You Fat
CARPER, Jean – The Food Pharmacy
CARTER, Jill & EDWARDS, Alison – The Elimination Diet Cookbook
CHAITOW, Leon – Candida Albicans: Could Yeast Be Your Problem?
CHAITOW, Leon – Fatigue: The New Self Help Series
CHAITOW, Leon – Post Viral Fatigue Syndrome
CHAITOW, Leon – The Raw Materials of Health
CHAITOW, Leon ND DO – Fibromyalgia & Muscle Pain
CHOPRA, Deepak – Boundless Energy
COLEMAN, Dr Vernon – Overcoming Stress
COLLINGE, William M.P.H., PH.D – Recovering From CFS
COLLINGRIDGE Emily Severe ME/CFS: A Guide to Living
COUSINS, Barbara – Cooking Without
COUSINS, Barbara – Vegetarian Cooking Without
CRAGGS-HINTON, Christine – Living with Fibromyalgia
CRAGGS-HINTON, Christine – The Chronic Fatigue Healing Diet
CROOK, William G – Nature’s Own Candida Cure
CROSTHWAITE, Fran – How to Eat Well Again on a Wheat, Gluten and Dairy Free Diet
CUNNINGHAM Chet The Fibromyalgia Relief Handbook
D’ADAMO Peter & WHITNEY, Catherine – Eat Right 4 Your Type
DANCEY, Christine P & BLACKHOUSE, Susan – IBS: A Complete Guide to Relief
DAWES, Dr Belinda & DOWNING, Dr Damien – Why M.E.?
DE RUYTER, Peter – Understanding Candida
DE VRIES, Jan – Body Energy
DE VRIES, Jan – Realistic Weight Control
DE VRIES, Jan – Viruses, Allergies And The Immune System
DOIDGE, Norman – The Brain That Changes Itself
ELLIOT, Rose & DE PAOLI, Carlo – Kitchen Pharmacy
EMSLEY, John & FELL, Peter – Was it Something you Ate?
FOX, Joyce – Surviving M.E.
FRANKLIN, Mike & SULLIVAN, Jane – M.E.: What Is It? Have You Got It? How To Get Better
GEARY, Amanda – The Food and Mood Handbook
GIBSON, Dr Sheila, TEMPLETON, Louise & GIBSON, Dr Robin – The Complete Wheat-Free Cookbook
GILBERT, Paul – Overcoming Depression
GLANVILLE-BLACKBURN, Jo – Home Spa Relax
GOLDBERG, Burton & TRIVIERI, Larry Jr – Chronic Fatigue, Fibromyalgia and Lyme Disease
GOLDENBERG, Don L – Fibromyalgia: Understanding and Getting Relief from Pain that Won’t Go Away
GRACE, Janey Lee – Imperfectly Natural Woman: Getting Life Right The Natural Way
GUPTA, ASHOK – The advanced ME/CFS & Fibromyalgia recovery programme with DVD [3 copies]
HAY, Louise L – You Can Heal Your Life
HOLFORD, Patrick – Super Nutrition for A Healthy Heart
HOLFORD, Patrick – The Energy Equation
HOLFORD, Patrick – The Whole Health Manual
HOLFORD, Patrick & BARLOW, Dr Philip – How To Protect Yourself From Pollution
HOLMES, Diana – Tears Behind Closed Doors: Failure to Diagnose a Thyroid Condition
HOWARD, Alex – Why Me? My Journey from ME to Health and Happiness
HO-YEN, Dr Darrel – Better Recovery From Viral Illness (5th Edition)
HO- YEN Dr Darrel – Climbing Out Of the Pit of Life
HO-YEN, Dr Darrel – Unwind! Understand And Control Life, Be Better!
INVEST in ME – Lost Voices
JACOBS Gill – Beat Candida
JAFRY, Nasim Marie – The State of Me
JEFFREYS, Toni – The Mile High Staircase
KABAT-ZINN, Jon – Full Catastrophe Living: How to cope with stress, pain and illness using mindfulness meditation
KENTON, Leslie & Susannah – Raw Energy Recipes
KENTON, Leslie – The Raw Energy Bible
KENNEDY Graham and Linda Poole – It’s Good to Laugh
LAZARIDES Linda – Nutritional Health Bible
LEVIN, Alan Scott & ZELLERBACH, Merla – The Allergy Relief Programme
LOGAN, Karen – Clean House, Clean Planet: Clean Your House for Pennies a Day, the Safe, Nontoxic Way
LONGDEN, Deric – Diana’s Story
MACINTYRE, Dr Anne – M.E./C.F.S.: A Practical Guide [3]
MACINTYRE, Dr Anne – M.E. – Post-Viral Fatigue Syndrome – How To Live With It
MACLARNON, Katie – M.E. And Me
MAGGIES Cancer – Back-up Recipes
MARBER, Ian – The Food Doctor Diet
MARKS & SPENCER- The eat well cookbook
MASON BROWN, Dr David – ME Action Pack 1 (2 tapes and booklet)
MASON BROWN, Dr David- ME Action Pack 2 (1 tape and booklet)
MAYNE, Michael – A Year Lost And Found
MCKEITH, Gillian – You are what you eat
MCKEON, Patrick – Coping with Depression and Elation
MEEK, Jennifer – Boost Your Immune System (Revised And Expanded)
MEEK, Jennifer – How to Boost Your Immune System
MICHELL, Lynn – Shattered: Life with M.E.
MILLMAN, Dan – Way of the Peaceful Warrior
MICKEL, Dr David – CFS/ME and Fibromyalgia : The long awaited cure
MOELLER, Mary & ELROD, Joe – The Fibromyalgia Nutrition Guide
MOSS, Jill – Three Villains: Exploring New Evidence in ME
MUMBY, Dr Keith – Allergies: What Everyone Should Know
MUMBY, Dr Keith – The Allergy Handbook
MUMBY, Dr Keith – The Food Allergy Plan
PARKER, Phil – An Introduction to The Lightning Process
PATERSON, Barbara – The Allergy Connection
PELLEGRINO, Mark J MD – Inside Fibromyalgia
PEMBERTON, Sue & BERRY, Catherine – Fighting Fatigue
PERRIN, Raymond – Osteopathy and ME
PERRIN, Raymond – The Perrin Technique – how to beat CFS-ME [2]
PROTO, Louis – Coming Alive
PURI, Professor Basant K. – Chronic Fatigue Syndrome
READER’S DIGEST- Foods That Heal Foods That Harm
RENO, LIZ & DEVRAIS, Joanna – Allergy Free Eating
ROSENBAUM, Michael & SUSSER, Murray – Solving The Puzzle Of Chronic Fatigue Syndrome
ROSSI, Ernest Lawrence – The 20-Minute Break (Ultradian Rhythms for Stress Relief)
SANTOS, Daniel – Feng Shui for the Body
SAVILL, Antoinette- The Big Book of Wheat-Free Cooking
SCARFE, Christopher – How to Improve Your Digestion And Absorption
SCHEFFER, Mechthild – Bach Flower Therapy: Theory and Practice
SHARPE, Michael – CFS/ME: The Facts
SHEPHERD, Dr Charles – Living With M.E.
SHERWOOD, Dr Paul – Get Well, Stay Well
SHERWOOD, Dr Paul – Your Back, Your Health
SKYPALA, Isabel – Healthy Eating
STARLANYL, Devin & COPELAND, Mary Ellen – Fibromyalgia & Chronic Myofascial Pain: A Survival Manual
STAUD, Roland with ADAMEC, Christine – Fibromyalgia for Dummies
STEINCAMP, Jacqueline – Overload: Beating M.E.
SUTHERLAND, Gaynor – Fibromyalgia Recipe Book
TEITELBAUM, Jacob – From Fatigued To Fantastic
THOMAS, Pat – What Works, What Doesn’t: The Guide to Alternative Healthcare
THOMSON, Peter & Donna – Complete Food Combining
TURNER, Richard & SIMONSEN, Elizabeth – Candida Albicans: Yeast-Free Recipes
TURP, Elizabeth – CFS/ME for Family
WELLER, Stella – Natural Immune Power
WELLS, Chris Graham – Known in Pain- A self-help guide for Chronic Pain Sufferers
WILKINSON, Steve – M.E. And You
WILKS, John – Understanding the Bowen Technique
WILLIAMS, Xandria – Fatigue
WILLIAMSON, Miryam Ehrlich – Fibromyalgia a comprehensive approach
WOOKEY, Celia – Myalgic Encephalomyelitis
ZINSER, Stephanie – The Good Gut Guide

Booklets

ACTION FOR ME – All about ME: Symptoms and Management
ACTION FOR ME – Your child and ME
ACTION FOR ME – Caring for Somebody with ME
ACTION FOR ME – Pacing for people with ME
ACTION FOR ME – Employees Guide to ME
ACTION FOR ME – Guidance on the Management of CFS/ME [2]
ACTION FOR ME  – Disability Alliance: problems and solutions for people affected by chronic ME
ACTION FOR ME – Men and ME
ACTION FOR ME  – A Turning Point for CFS/ME
ACTION FOR ME – Severely Neglected: ME in the UK
ACTION FOR ME- the Chief Officer’s Working Group Report on CFS/ME
CAMPLING, JOHN & Frankie – Chronic Fatigue Syndrome
CARRUTHERS, Bruce – a Clinical Case Definition and Guidelines for medical practitioners [2]
HOWARD, Alex – A Brain Fogger’s Guide to Nutrition and M.E
LPIN – CHANGES – Stress
LPIN – CHANGES – Stress and Anxiety
LPIN – CHANGES – Controlling Anger
ME ALLIANCE – ME Diagnosis: Delay Harms Health
ME ASSOCIATION – Managing my ME
ME ASSOCIATION – An exploration of the Key Clinical Issues
NHS Scottish Good Practice Statement – Patient Guide
NHS Scottish Good Practice Statement on ME-CFS [2]
NATIONAL TRUST FOR SCOTLAND – Access Guide
POLIO FELLOWSHIP – Pacing for Activity and Exercise
RAMSAY, Melvin – Post viral Fatigue States
SYKES & CAMPION – CFS/ME Trusting Patients Perceptions of a Multi-Dimensional Physical Illness
SYKES & CAMPION – The Physical and the Mental in CFS/ME

DVDs

Beat Fatigue with Yoga – Fiona Agombar & Sue Delf
Gentle Energy Yoga – Kim
Yoga for stress relief – Body Wisdom Media
Dr Richard Bruno & Dr Elizabeth Dowsett – Polio Paradox/Viral illness and ME
Energising Biomedical Research in ME/CFS (2006) – Dr Vance Spence of MERGE (now ME Research UK) [2]
International Conference on ME/CFS Biomedical Research (2008) – ME Research UK/Irish ME Trust [2]
International Conference on ME/CFS (2009) – Invest in ME
International Conference on ME/CFS (2010) – Invest in ME
International Conference on ME/CFS (2011) – Invest in ME
Prime Directive Supplement [2]
What Doctors Don’t Tell You: Health and Nutrition – The Real Facts
Freedom from ME: Journeys to Recovery – A Paul Young film
Ross Grieve – CFS + illness management
MESH Open Meeting: January 2001
MESH Open Meeting: Eva Tombs-Heirman – Homoeopathy – March 2002 [2]
MESH Open Meeting: Dr Abhijit Chaudhuri – ME/CFS – June 2002 [2]
MESH Open Meeting: MERGE (now ME Research UK) – ME Research – March 2003 [2]
MESH Open Meeting: Dr John Gow – Gene Function in People with ME/CFS – September 2005 [3]
MESH Open Meeting: Meeting with ME North East – January 2006 [2]
MESH Open Meeting: Keith Anderson – The Role of the ME Specialist Nurse – March 2006 [2]
MESH Open Meeting: Joan Crawford – ME, Borelliosis and Lyme Disease – October 2006 [3]
MESH Open Meeting: Dr Charles Shepherd of the ME Association – ME/CFS: All That’s New in Rsearch and Management – March 2007 [4]
MESH Open Meeting: Susan Webster – The Role of the AfME Project Co-Ordinator, Scotland – September 2007 [2]
MESH Open Meeting: Ross Grieve – Working with the Person, not the Condition – March 2008 [4]
MESH Open Meeting: Jan Oakley – The Lightning Process – October 2008
MESH Open Meeting: Dr Raymond Perrin – The Perrin Technique – March 2010 [2]
MESH Open Meeting: Dr Julia Newton – Standing Up For Fatigue – October 2010

CDs

ADDERLEY, Delphine – Mindfulness Breathing (short)
CHANGES – Deep Relaxation/Quick Relaxation
CURRY, Nicola (Changes) – Muscular Relaxation: Visualisation on the Beach
JEN (Changes) – Passive Progressive Relaxation
SIEGEL, BERNIE MD – Healing Meditations: enhance your immune system and find the key to good health [2]
STIENE, Bronwen – Reiki Meditations for self-healing

Welfare Benefits/Legal

DLA/AA A guide to making a claim x 3
DISABILITY RIGHTS HANDBOOK 35TH Edition 2010-2011
DISABILITY RIGHTS HANDBOOK 36TH Edition 2011-2012

Fact Sheets

1. MEDICAL RESEARCH COUNCIL CFS/ME research strategy [2]
2. MERGE Report on the AACFS Sixth International Conference 2003
3. EDINBURGH ME SELF HELP GROUP – Value of Healthy Blood
4. ACTION FOR ME – Antioxidants fact sheet
5. ME ACTION CAMPAIGN – Therapy Information Pack
6. MESH Difference in patterns of Motor and Cognitive Function 2000
7. MESH Parliamentary Debate on ME
8. IMMUNOPRO Glutathyone – the Body’s Best Kept Secret
9. SARAH MYHILL DR MBBS An introduction to EPD
10. CFS RESEARCH FOUNDATION Newsletter 6 Persistence of Enterovirus Infection
11. ACTION FOR ME Organo Phosphate poisoning
12. ACTION FOR ME Sex Hormone Replacement Therapy
13. ACTION FOR ME Flu Vaccination Information
14. ME Practical Advice – Dietary changes
15. REPORT OF THE SCOTTISH SHORT LIFE WORKING GROUP CFS/ME Scotland
16. ACTION FOR ME Antidepressants
17. CAPPACCHIONE Lucia The Power of Your Other Hand
18. MIGRAINE TRUST Facts about Migraine
19. ACTION FOR ME Candida Factsheet
20. DR SKINNER ME and Thyroid Function
21. DR DAVID BELL ME and the Autonomic Nervous System
22. GUPTA ASHOK Unconscious Amygdale Conditioning
23. MESH Report of Jill Moss’s Talk on Saturday 19th February
24. ALAN LEAR Random Thoughts on Myalgic Life
25. TINNITUS
26. ME ASSOCIATION Fact sheets
27. CHRONIC FATIGUE SYNDROME NEWS CFS Study
28. DR MASON BROWN Facial Pallor Sign
29. NHS PLUS Occupational Aspects of Management of CFS/ME
30. DR MCINTYRE-Speech to the North Merseyside ME Association
31. Factsheet Long term Avoidance of Exposure to House Dust Mites/Management of Dust Allergy
32. NHS Lothian Review Group on ME/CFS
33. OUTREACH West London ME Group – Blood Ban XMRV and ME
34. ME ASSOCIATION Managing ME

Date: Wednesday 6th June
Time: 2.30pm
Venue: Bisque Bar and Brasserie, 69 Bruntsfield Place, Edinburgh

Map:

We meet in the brasserie, which is a part of the Bruntsfield Hotel. It also has access to a lovely outdoor garden. There is table service so no queuing with trays and no struggling not to spill anything in getting to your seat. Prices are reasonable with a good range of refreshments and snacks.

There is ample parking (Pay & Display) along Bruntsfield Place on the opposite side of the road and also some specific blue badge spaces.

The nearest bus stops are:
From town – at the bottom of Bruntsfield Links (just after BP garage/Whitehouse Loan) which involves a short walk uphill and crossing the road OR the next stop is on the corner of Forbes Road (outside Nippers) – a slightly further walk but flat then downhill and easier access to cross the road at a Pelican crossing.
Into town – just after Costa Coffee outside Bay Tree Company/Hallibut & Herring with a short downhill walk on the same side of the road.
Lothian Buses: 11, 15, 16 and 23.

The cafe meetings are informal get-togethers for company, conversation, support, entertainment, information sharing, and refreshment. Please look out for the Newsletter on our table, or ask the staff if you can’t see us. All welcome to join us – you don’t have to be a member.

If you haven’t been along to the cafe meetings before, and would like some moral support to attend, contact us on info@edmesh.org.uk or 0845 625 2025 and we will arrange for a committee member to meet up with you first.

The Perrin Technique

edmesh Open Meeting Talk on 25 March 2010

From edmesh newsletter 72, Summer 2010

The Speaker

Dr. Raymond Perrin is a Registered Osteopath who trained with the British School of Osteopathy. He has been a specialist in the study and treatment of ME since 1989 when he cured a cyclist patient of ME without intending to, and has a Ph.D. in the involvement of cerebrospinal fluid and lymphatic drainage in CFS/ME.

The Perrin Technique for CFS/ME was carefully researched and tested by academic staff in the Universities of Salford and Manchester between 1994 and 2005. Dr. Perrin personally trains and licences all practitioners of his technique at the Perrin Clinic in Manchester.

The Importance of the Lymphatic System

Dr Perrin explained that every part of the body from cells to organs must be nourished and purified to function healthily. The role of the blood and circulatory system is well known in this regard; less understood is the function of the lymphatic system.

The major functions of the body are controlled by the brain. Cerebrospinal fluid surrounds the brain, supplying nutrients to it. The fluid also draws poisons from the brain, which flow through the capillaries into the bloodstream and from there go to be detoxified in the liver.

However, blood capillaries can only deal with small molecules. Large molecules of toxins must go into the lymphatic system, which is a network of tubes which carry lymph, a clear fluid, around the body. This system provides a drainage method that backs up the blood flow. The large particles enter the system at the terminal lymph vessels or terminal lymphatics, through openings like gills in a fish. The particles break down into smaller molecules in the lymph nodes on the way to the two large subclavian veins under the collar bones. The breakdown products flow into the bloodstream and then make for the liver for final detoxification.

How CFS/ME Develops

Patients all seem to have a predisposing history of sympathetic nervous system overload, either physically, chemically, immunologically or emotionally:

• through  overactivity or injury
• because of environmental pollution
• by chronic infections or allergens
• from family or work stress.

An important function of the sympathetic nervous system is to control the pumping mechanism in the walls of the thoracic duct in the chest, which is the central system for draining lymph fluid into the bloodstream. Dr. Perrin explained that the pumping mechanism was discovered in the 1960s by Professor John Kinmonth, a London chest surgeon. However, even today, this is not generally recognised and taught in medical schools.

Diagram of the normal lymph flow through a lymphatic vessel with open valves.

If the sympathetic nervous system is hyperactive, the pump may push the lymph fluid in the wrong direction and lead to a further build-up of toxins in the body.

The lymphatic system extends from the head to the feet, with main lymph nodes in the chest as well as subsidiary lymph nodes in clusters under the chin, at the shoulders, under the arms and in the groin. It includes the lymphatic vessels through which the lymph travels in a one-way system only towards the heart.

In a disease state, toxins can actually be pumped back into the central nervous system, e.g. into the brain or breast tissue. The valves of the lymph vessels may become damaged as the lymph flows in both directions, creating congestion.

This gives rise to varicose lymph vessels or varicose lymphatics, as seen by Professor Kinmonth in surgery, with their typical beaded, colourless appearance on the skin. Dr Perrin says that they can be felt by a specially trained osteopath and that every ME patient has them.

Diagram showing development of varicose lymphatics, with reverse flow of lymph

The Role of the Hypothalamus

The hypothalamus, a small region low in the front of the brain, controls several hormones and the sympathetic nerves, which spread out in twelve pairs from the thoracic section of the spine, extending down the main part of the back.

The hypothalamus is one of the few sites in the brain allowing large molecules from the blood to enter: the blood-brain barrier acts as a filter elsewhere. The function of the hypothalamus is to sample the hormones that pass to it from the blood, and signal to the organs to rebalance if necessary. Unfortunately, large toxic molecules may also enter the brain at this point, or may already be there because of the chemical changes going on in the brain all the time, especially when stress is present.

Fortunately there is a drainage mechanism from the brain into the lymphatic system, discovered in the 1870s by the American founder of osteopathy, Dr. A. T. Still. He wrote that “the lymphatics are closely and universally connected with the spinal cord and all other nerves, and all drink from the waters of the brain.

Dr Perrin explained that there are four drainage points in the brain. The main one is the cribriform plate, part of the ethmoid bone, which separates the nasal cavity from the brain. Two rows of small holes in the plate allow the passage of blood vessels, nerves and cerebrospinal fluid to the nasal passages. The three further drainage points in the skull are situated at the auditory nerve, at the optic nerve and at the part of the trigeminal nerve in the cheek. If, however, the plate or another point is damaged, there will be a build-up of toxins in the lymph and damage to the sympathetic nervous system’s control of the thoracic duct, setting up a vicious circle. Damage can occur through causes such as congenital defect, birth trauma, emotional upset, infection, postural strain or environmental pollution.

Most of the medical profession are ignorant of these drainage points and their function, said Dr Perrin.

The Four Physical Signs of CFS/ME

Having examined over a thousand CFS/ME patients over 21 years, Dr Perrin (and now his trained practitioners) can identify four signs to confirm the diagnosis. These are:

1. Varicose lymphatic vessels and tenderness at ‘Perrin’s Point’ in the left breast area (the point is where the thoracic duct turns to the left to enter the subclavian vein, and where two sets of sensory nerves join).
2. Tenderness at the coeliac or solar plexus, at the front of the upper abdomen, where adjacent sensory and
   sympathetic nerves connect.
3. Structural problems at the mid-point of the spine, which may be flattened or restricted and tender to the touch.
4. Slow, shallow, erratic cranial rhythm to be felt in the upper part of the head, caused by lymphatic pump reversal.

Other signs include yeast patches on the skin; stretch marks (striae) due to collagen damage caused by backflow of lymph; swellings and cysts; acne; and overdilation of pupils from overstimulation of the sympathetic nervous system.

Treatment

Dr Perrin explained briefly that treatment by his technique involves gentle stimulation of the lymphatic system through stroking to drain the offending toxins from the central nervous system. This induces relaxation, soothes irritation and clears congestion from the cranium and also from the spine and surrounding soft tissue. Treatment may take between three months and three years depending on how severe the symptoms and signs are, and involves some self-massage.

In two recent clinical trials, patients with varying degrees of illness severity showed an overall 40% improvement in a year. Dr Perrin said that 90% of his personal patients are helped, and that 30% get to the 100% functioning level.

Publications and Presentations

Dr Perrin has been having articles about his work published in medical journals since 1993, and has also written a book, The Perrin Technique: how to beat Chronic Fatigue Syndrome/ME. His latest article appeared in the British Journal of Radiology in May 2010.

He was asked to make a presentation to the Group on Scientific Research (the Gibson Inquiry) at the House of Commons in 2006. The final report recommended that his methods would be “cost effective”. As a result, Dr Perrin will be presenting a research project that will take five years to prepare to the NHS and NICE.

He presented three papers at the International Association for CFS/ME’s Research and Clinical Conference at Reno, Nevada, in March 2009, and was invited to address the World Congress of Psychosomatic Medicine in 2009 as well as the European Association of Psychiatrists.

Questions

In response to questions, Dr Perrin explained that stresses of all kinds cause chemical changes in the brain and that toxins could remain in the body for years. When they are drained out by his methods, they will hit the body’s pain receptors, and may cause varying degrees of pain, although usually the more pain, the more gain. Standard lymphatic drainage techniques do not work for CFS/ME as they simply move the lymph faster the wrong way.

Dr Perrin believes that the drainage pathway is compromised mechanically as part of the root of CFS/ME. The main problem is that the toxins are affecting brain function, and metabolism. There is chronic hyperactivity of the sympathetic nervous system. He conceded that other treatments may be needed to complement his work; some of these come under the heading of “Wellbeing Therapy”.

Commenting on the XMRV virus debate, Dr Perrin quoted Dr Judy Mikovits herself as saying that it is “a consequence of impaired immunity”, and not a cause of CFS/ME. This ties in with his own belief that CFS/ME is more often a pre-viral, not a post-viral condition.

Alcohol can be difficult to tolerate because it is yet another toxin that the liver must struggle with, and because it triggers NMDA receptors, which have heightened sensitivity.

Dr Perrin concluded by warning that the World Health Organisation and the American Psychiatric Association are thinking of reclassifying CFS/ME as a psychiatric disease, and that his work is one of the main things that could stand in the way.

Follow-up

edmesh members may obtain your own free copy of the DVD of Dr Perrin’s talk by emailing jack@edmesh.org.uk. The DVD is also available to borrow from the edmesh library.

The book “The Perrin Technique”, published by Hammersmith Press Ltd in 2007, was kindly presented to the edmesh library by Dr Perrin in 2008.

Dr Perrin’s website is www.theperrinclinic.com and a documentary illustrating how patients have benefited may be viewed at www.forme-cfs.co.uk.

© edmesh 2010.

Please contact the newsletter editor (editor@edmesh.org.uk) if you wish to republish this article.

The recently funded AfME/LTCAS project will look at the potential of Skype to be used in a group setting by people with M.E.  Many people with M.E. are too ill to attend their local group meetings or don’t have a support group near them.  The project would like to find out if Skype could be used to allow such people with M.E. the opportunity to take part in a type of virtual support group meeting.

AfME would like to hold small and simple test pilots in Edinburgh and the Highland and Islands. Ideally, some of those taking part would not normally be able to attend meetings.

edmesh would like to invite members who are interested in taking part to contact us via info@edmesh.org.uk, or to pass this info on to anyone with M.E. who may be interested.

More information here:

http://www.actionforme.org.uk/get-informed/news/scottish-hub-news/funds-awarded-for-skype-feasibility-project

The project was awarded a small grant at the beginning of September to pay for running costs. Funded by Comic Relief, through the Scottish Community Foundation. Comic Relief spends money raised by its fundraising campaigns, Red Nose Day and Sport Relief.

This will allow the therapists to continue treating edmesh members meantime.

edmesh will be joining the rally – look out for us under the Action for ME banner.

The event will start at 11am at the Ross Bandstand in Princes St Gardens (link to map) and last about 2 hours. People with disabilities and politicians will speak about the effect of the proposed cuts.

All those interesting in attending are asked to register for the event in advance. For information on how to do so, visit The Hardest Hit website (click on Action this October ->Scotland).

If you cannot attend the rally, or prefer to protest online, go to their website and follow the link at the top.

You must be over 18 to take part. There is no obligation to fill in the survey, and you don’t have to answer any questions you prefer not to. You can have a carer or friend fill it out on your behalf as long as the answers are from you. All data will be kept confidential.

The survey should take about 15 minutes to complete.

The survey is available online at http://www.surveymonkey.com/s/scotneuroalliancehealth1. We will also have printed copies to fill in at our next cafe meeting on 5 October. Surveys can be sent freepost.

Update: you can now download the survey and cover letter (as PDF files) from this page: http://www.scottishneurological.org.uk/blogs/alliance_news/. These can be printed off and returned to the address given.

The closing date for completed surveys is 14 October 2011.