Saturday, March 3, 2007
As I search the Internet I have noticed that there are a number of differing opinions. There are those who use the term ME/CFS interchangeably and to mean the same illness, whilst others claim that ME is a different and more debilitating condition than CFS ; that ME is a more long-standing illness. People in this camp claim that ME is possibly caused by a viral infection where as CFS is expressed when an individual burns out physically. It is almost as if an elitism exists - an attitude that makes me very uncomfortable.
CFS and ME may initially be different illnesses, but if this is the case I think that it is important to note that their outcome is the same. It may simply be that the initial causative factor differs - i.e. an individual becomes debilitated after a virus or an individual becomes debilitated after burn-out. However, pathologically (i.e. in the body) the condition is expressing itself in the same way, whatever its label.
Lets take my own diagnosis for example. I was diagnosed with CFS after a series of multiple stressors - it seems that my body just gave up on me. Taken on face value we could assume that the stresses caused the CFS. However, this is a very Western medical way of viewing the illness, which does not connect past illnesses with present, and views disease in terms of what is presenting now or the symptoms, rather than looking at the whole person. However, if you go for a Perrin treatment, or visit the Bristol Frenchay Centre for ME and CFS, a complete history is taken of your illness from birth to present day. Why is this relevant? Because ME/CFS is a progressive illness and should not just be viewed in terms of the main trigger.
So if we take a deeper look at my medical history, it becomes clear that the point in which my body gave up following multiple stressors was not the start of my condition, rather it had been building for many years and this was it's crescendo. Like many ME/CFS sufferers I had early tonsillitis as a child - so bad that the poison from my tonsils was causing blisters in my stomach lining. I had eczema from birth, suffered a really intense bout of measles, and was what would generally be labeled as a 'sickly child'. During my teens I was constantly off from school with unexplained illness - general malaise and a severe lack of energy. This occurred so frequently that there was Social Services involvement. Just before my twenties I got a cold sore in my eczema which spread all over my body - I had over 1000 sores and was in isolation in hospital for some time. It took me 3 years to get my A-levels instead of 2, and 4 years to get my degree instead of 3. I was often tired and lacked energy, and would alternate between this state and being a complete 'fire ball'. At times I seemed to have spurts of uncontrollable energy and would be completely over-excitable. When my energy was down I fell into the cycle of using stimulants to keep me going, and lived on a rollercoster of adrenaline and energy crashes. When I did finally qualify as a teacher I always had the worst sickness record out of all the team. I never made it through a single half term without some time off for general exhaustion. I had severe blood sugar problems for most of my adult life although I was tested for diabetes many times and the tests became fine. 8 years before I had my major crash with CFS/ME I became allergic to alcohol, caffeine, sugar, wheat, and my digestion became very volatile. I left one teaching position in about 2003 due to exhaustion and spent 18 months recovering. I finally had to walk out of my position as a performing arts lecturer at the beginning of 2006 as I simply could not carry on. Also, six months before I became severely ill with ME/CFS I did have a very severe virus that was so intense that I hallucinated for days. This was the beginning of my decline and I had severe muscle pain and dizziness every time I stood up for the next six months before I finally crashed.
So the questions can be asked: is the CFS that I suffer from a simple matter of burn-out or is it an accumulation of all the illness I have suffered over the past 34 years? Was the initial virus six months before my crash the causative factor or was it the fact that I was so burned out physically that I was not able to fully recover from this virus? I know from talking and connecting with many ME/CFS patients that my story is quite a familiar one. So if ME and CFS are different conditions how can we tell which one I have if we don't have a reliable test to differentiate between the two? But more to the point, I feel that it is not important to me whether I carry the label of CFS or ME. What is important to me is what I do to get better. We could all waste a lot of energy arguing the corner about which condition we sufferer from or whether it's the same condition, and we could all play the "who's worse off than who?" game. But that energy would be put to a far better use if we spent it on ourselves and put it towards overcoming the condition - whatever you want to call it. It is my hope that we can move forward together and overcome this unhealthy attitude towards the labeling of the condition. We often feel isolated as it is without dividing among ourselves.
Wishing you health, whatever your 'label' may be.
Thursday, March 1, 2007
I look forward to my weekly visit to Shirley - as well as being an excellent practitioner she is a truely lovely human being. Her warmth and positivity are infectious and she helps me to keep focused on the positive side of healing. Quite often if I have a dark moment during the week between visits and I recall something that Shirley said and am able to refocus myself. We all know that the journey to health for CFS/ME patients can be a lonely one, and it is really good to have someone on your side who is rooting for your health and contributing to it at the same time.
When I first started the Perrin technique I felt extremely nauseous and uncomfortable - I take this as a good sign as if the treatment was a placebo then this would not be the case. However, over 3 months into the treatment I have moved through the initial wobbliness that it created and feel like I am starting to make progress. Good signs are that the hard lumps in my breasts have become less painful and have started to shift, and my energy is more consistent. I would definitely recommend this path to fellow sufferers, and particularly recommend Shirley to those in the Bristol area. Check out Shirley's website:
and contact her on firstname.lastname@example.org
07870 767439 or on low call 0845 0091249
Wednesday, February 28, 2007
Perrin is an Osteopath. He has recently been awarded a Doctorate from Salford University for his contribution to ME/CFS. About 17 years ago Dr Perrin treated an ME patient for back pain, who subsequently overcame his ME and claimed that Dr Perrin had cured him. This sparked an interest in Dr Perrin which led him to extensive research on the links between ME/CFS and lymphatic drainage. The lymph system drains toxins from the body and deposits them in the blood stream where they are removed by the organs of elimination. In ME sufferers Dr Perrin found that the lymph at some point has been flowing too fast, causing a congestion in the chest area - he discovered that the lymph vessels can actually varicose and eventually become blocked or dysfunctional. In addition, Dr Perrin has studied the work of earlier pioneers which indicates that cerebro-spinal fluid (the fluid found around the brain and in the spinal column) actually drains into the lymphatic system around the point of the midback. In CFS/ME patients it appears that there is little movement in the cerebro-spinal fluid which means that the toxins around the brain are not being moved away from the brain (a feasable explaination for brainfog). He found a number of common pointers in ME/CFS patients that he has developed as a diagnostic technique for the condition. These include a flattening of the spinal column in the thoracic area (between the shoulder blades); hard, painful lumps in the breast area, significantly one inch lateral from the left nipple (i.e. one inch to the left of the left nipple); pain on palpation of the area just below the rib cage; and a dulling of the cranial rhythm (detectable by cranio-sacral therapists).
As is a popular theory among many practitioners and some doctors who have been working with ME/CFS patients, Perrin believes that there is an overactive hypothalamus associated with the condition. The hypothalamus controls the output of a great number of hormones which circulate the body. It governs: the autonomic nervous system; appetite; thirst and water balance; body temperature; emotional reactions; sexual behaviour; and the biological clock, including sleeping and waking cycles. The trouble is that although the hypothalamus is a commander in chief governing all these systems single handedly, as far as Western medicine goes, NOTHING CONTROLS THE HYPOTHALAMUS.
Perrin's treatment involves deep lymphatic massage, particularly on the chest area, to encourage the flow of the congested lymph. It also involves back massage to encourage the flow of cerebro-spinal fluid, plus cranio-sacral work. As well as a weekly session with a qualified practitioner, a home technique is taught which you can practice on yourself or with help of a partner or family member. A series of extremely gentle exercises are taught in order to encourage the flow of the lymph, and hot/cold packs are used on the spinal area. As well as removing the congestion in the lymphatic system the treatment is devised to help calm the overactive hypothalamus.
Perrin does not offer a quick fix for the condition. However, he does offer hope for OVERCOMING the condition, rather than just managing it. He has devised a method where a grade can be given (1-10) on the severity of the condition and the anticipated time of complete recovery. He also has a DVD available which is very encouraging as it interviews many recovered patients. It is also very empowering to be given exercises and things to do that can help, rather than just sitting it out hoping for the best!
Details of Raymond Perrin's work can be found at:
The sight also contains a list of practitioners and details of the DVD.
In following posts I will outline my experiences with the treatment so far.
Tuesday, February 27, 2007
Hello, I'm Sasha, and I'd like to welcome you to my blog. I'm writing this information to share with you my incredible journey of my recovery from ME/CFS which is still very much ongoing. I'd like to take this opportunity to share a bit of my story with you in the hope that it will help you to move forward in your own recovery.
I'm 34 years old and have never really been in good health, but it was only recently that I was diagnosed with CFS. My health took it's most severe nose dive after a series of multiple stresses in 2005, and since then I have been disabled with the condition, although I suspect that it is ME/CFS that has blighted my health since childhood.
Far from seeing this condition as a curse, I have learned to see it as a great teacher and I have been very grateful for some of the lessons that it has taught me, although I haven't always felt this way. There are times when I have been incredibly depressed and have slipped into the dark hole of despair. Despite having trained in a whole host of holistic therapies before the onset of severe illness, I had trouble translating what I had learned into what I needed. Like so many therapists that get struck down by severe illness I found it easier to apply the techniques to others than to myself. Although I wholeheartedly practiced what I preached on one hand, I still had quite an unbalanced and hectic life before I got ill, and ME was my price.
As well as being trained in holistics I was also a Performing Arts lecturer before I became ill – no prizes for guessing how I burned myself out!! To say I was struck down with ME/CFS is an understatement. One month I was lecturing in Performing Arts at a prestigious college, and teaching yoga, pilates and body maintenance, attending gigs and festivals, dancing, working out and generally living my life to the full; within a few months there was such a rapid decline that I needed someone else to put my socks on and to move my feet backward and forward in bed so that my blood still circulated, and I couldn't get out of the bath on my own.
Like most people with the condition I have horror stories about doctors, frustrations at being labeled as a depressive, and a host of memories about not being taken seriously and feeling isolated and neglected. However, that is not what I want to use this space for. There are a vast number of other places on the internet for those who want to express their despair at the antiquated treatment of the condition, and although I believe that there will be a time when it will be looked upon as barbaric by the medical profession at the early treatment of those with the condition, I would like to reserve this space for a more positive outlook and a solution focused approach. This space is to help you with your journey to recovery.
I clearly remember the point when I switched from fear, self-pity, anxiety, depression and grief to hope, belief, joy, optimism and light. It was yet another strike-out day and I was in severe pain. All I could do was lay there all day in a darkened room and the thought was unbearable. Yet from inside me I heard myself ask who was making it unbearable and I realised that it was me! I had long since understood and practised presence - not reflecting on the past or wishing for the future – before I was ill (although not always successfully!). However, I hadn't understood how to be present in illness, especially when there was so much pain. In my misery I paused – I stopped longing for a time in the future where I was better or a time in the past and just accepted where I was in the moment. I felt an overwhelming sense of peace come over me and although the pain was there I felt it in a totally different way.
The months that followed marked a significant change in my approach to the illness. I researched, I connected with the right people, I adapted old techniques from yoga, I learned new techniques, I ordered books, I connected with the right people. Because I was on a different wave length I also started to draw the right people to me. I went to an amazing conference (run by www.healthyme.co.uk) and befriended the organisers (2 fantastic sisters Fiona and Jo who also have the condition and who are a joy to know), I remembered how to laugh and make others laugh, and I started to beat down the weeds that had grown around me and see a light at the end of the tunnel. Thanks to the amazing ME conference I discovered Perrin Technique, learned more about the work of Professor Puri and his invaluable research on essential fatty acids, and learned about a fantastic supplement – Juice Plus – which significantly raises anti-oxidant levels. Through my own research I also discovered Emotional Freedom Technique and Energy Medicine, and so my journey continued. I also discovered Metabolic Typing and changed my diet drastically from a vegan diet of mainly raw foods, to a diet which included meat and was high in protein – a radical shift in my longstanding beliefs about nutrition. I also had sessions in Reverse Therapy and learned the messages that my illness was giving me. I learned to balance the activities that i was doing so that I wasn't doing to much. My only 'fault' may have been my over-zealous attempt to get well but I soon learned that it wasn't a race and that there was no first prize for overcoming illness it in a set time! I had to learn to overcome my perfectionist nature and let go of the outcome, and simply practice health.
I cannot credit myself alone for my positive outlook of the journey I'm on. My partner Rupert has been a tower of strength and has patiently supported me as my self-discovery unfolded, offering patience, wisdom and insight, and helping me financially to fund my journey to health. There are a host of amazing practitioners that have also played a role in my positive outlook, and I will use these pages to reflect on the help and experience that they have offered. There have also been a number of friends and family who have supported in very generous and loving ways. I realize that not everyone is as fortunate and that there are many who go it alone. Whatever your position or path through this mysterious illness I hope that you can find some support or information in these pages that will aid your recovery. I encourage you to find optimism and hope and believe in your body's amazing power to heal. When I am well I hope to dedicate my life to helping others like yourself on their journey to health, but in the meantime I offer my sincere and heartfelt hope that you find something in these pages that helps you to feel that you are not alone.
Sending you hope