CFS/ME what's the difference?

There seems to be lots of confusion over whether CFS and ME are two different conditions, or the same illness. I would like to give my opinion on the subject.

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.

Perrin Technique Part 2 - Shirley Kay

If you are considering undergoing the Perrin Technique for CFS/ME and you're in Bristol, then you are in luck! Shirley Kay is the practitioner for the technique in Bristol and you will be very safe in her hands. Shirley studied Oesteopathy and Naturopathy at degree level and it appears that she hasn't stopped studying since! She continuously updates and develops her wealth of knowledge and is qualified in a host of therapies across the board. As well as being highly skilled in the Perrin Technique she is able to carry out allergy testing (through muscle testing), and assess your metabolic type to ensure you are getting the right balance of macro-nutrients (essential for health). Additionally, Shirley is trained in Iridology and is able to assess the strength of various internal organs and systems through the pattern of your iris. She uses a host of other Naturopathic techniques tailored to your individual needs, in order to support your journey to health. With the Perrin Technique, the introduction of Metabolic Typing into my diet, and a homeopathic remedy for my dust allergies, I have started to make good progress.

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:

www.shirleykay.co.uk

and contact her on info@shirleykay.co.uk
07870 767439 or on low call 0845 0091249

Perrin Technique Part 1

For those of you who aren't familiar with Raymond Perrins work, the following is a brief introduction to the techniques used.

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:

www.theperrinclinic.com

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.