Chronic Fatigue Syndrome (CFS) is a condition that is considered to affect around 250,000 throughout the United Kingdom – with symptoms varying greatly in severity from person to person. Yet what seems to be so perplexing when it comes to fatigue-related conditions such as CFS, Fibromyalgia and ME is the lack of diagnosis, treatment and recovery that is available. A focus on treating symptoms as opposed to finding the root cause of a condition has left thousands of people with debilitating, life changing illnesses that apparently ‘have no cure’.
Our blog this week is provided by Elaine Wilkins, an award winning author and founder of the Chrysalis Effect Recovery Programmes. Elaine looks at the need for a new health model approach to 21st century medicine, not one that numbs pain and treats symptoms, but one that looks at what precedes the breakdown of someone’s health, and treating a symptom as part of the whole as opposed to treating them in isolation.
With this in mind, Elaine introduces us to the Chrysalis Effect Recovery Model, a much needed innovation that looks to overcome fatigue related chronic conditions such as ME, CFS and Fibromyalgia.
In a recent article in The British Medical Journal ‘The Long Wait For A Breakthrough In Chronic Fatigue Syndrome – Not Over Yet’ by Professors Andrew R Lloyd and Jos W M van der Meer,* ME, or chronic fatigue syndrome was referred to as ‘Enigmatic’. I immediately looked this up and the definition was ‘Difficult to understand or mysterious.’
If you, or your patient or client, is suffering with a myriad of symptoms including insomnia, IBS, poor memory, brain fog, muscle and joint pain, headaches migraine and anxiety, you will be familiar with the fact that after multiple visits to GPs, many blood tests and various scans; the most likely outcome will be clear test results and a long and protracted wait for diagnosis.
This will be followed by a very worrying realisation that once diagnosed with either ME, CFS or Fibromyalgia the focus is always on ‘managing’ a long term or chronic condition that is unpredictable.
Sufferers usually feel compelled to look for answers themselves, which can lead to some pretty depressing findings. One book called ‘ME Chronic Fatigue Syndrome: A practical Guide’ by Dr Ann Macintyre opens by saying ‘These conditions have been described as a living death’.
The medical definitions are equally frightening:
M.E. Myalgic Encephalomyelitis
Myalgic means muscle pain or tenderness. Encephalomyelitis means inflammation of the brain and spinal cord.
Chronic Fatigue Syndrome
Chronic fatigue syndrome/ME is a condition where you have long-term disabling tiredness (fatigue). Most people with chronic fatigue syndrome/ME also have one or more other symptoms such as muscular pains, joint pains, disturbed sleep patterns, poor concentration, headaches. The cause is not known.
Fibromyalgia
Also known as fibromyalgia syndrome (FMS), this is a long-term condition that causes pain all over the body. There is no cure.
Fibromyalgia is a neurosensory disorder characterized by widespread muscle pain, joint stiffness, and fatigue. Condition is chronic (ongoing).
The definitions here are cited from trusted websites including NHS website and patient.co.uk which are endorsed by The Royal Society for Public Health and Certified Members of the Information Standard, assuring readers that this is information they can trust.
So here is a situation where people are very ill and facing a prolonged search for a diagnosis and a cure. It is for these reasons that people end up becoming defined by their illness, which is a travesty. There is also the debate over classification of the illness.
Disbelief and Debate over Classification
The World Health Organization: (WHO) has classified CFS as a chronic (long-term)
neurological condition.
National Institute for Health and Care Excellence: (NICE) guidelines for CFS don’t view CFS as a neurological condition.
With such confusing information, none of which is positive, what ensues is a desperate search. Extensive practitioner hopping is common, trying a multitude of random treatments and therapies in an ad-hoc manner until finances and faith in recovery from a condition, with open admission by eminent medical professionals, is ‘Difficult to Understand and Mysterious’.
The Real Mystery
Having been through my own personal 6 year recovery journey of ME, waiting 18 months for a diagnosis and then having to figure out my own recovery, I know what this felt like.
In the early days, I certainly found it difficult to understand why there was no clear explanation for the endless list of debilitating symptoms? Why there was no treatment plan, and why I went from being a dynamic busy mum and businesswoman to becoming bed-bound? This is the reality. Jobs and incomes are lost, social lives disappear, family life is dramatically affected and everyone is in the dark about what to do.
These multi-faceted health breakdowns are messy. They do not fit a neat diagnosis. There is no magic bullet. But they are not a mystery.
The real mystery is why do we still have a health model, in the UK, that treats symptoms not causes?
A model that gives sleeping pills for insomnia, pain killers for pain, anti-depressants for anxiety. A model which refers one person with headaches to a neurologist, IBS to a gastroenterologist, pain to a rheumatologist instead of looking at what has happened to precede the breakdown of a person’s health and seeing each symptom as a part of the whole.
Is it only me that thinks that finds this extremely difficult and mysterious and flies in the face of common sense?
My illness, like every single client we support to recovery, was not something I caught, like the flu. Yes, I did succumb to viruses. My immune system was weakened because I was not taking care of myself. I worked too hard, I did too much for too many, I looked as though I had it all under control but my full-on life had taken its toll. It was a very loud and clear message that my life was totally out of balance. At no point, in any of my many visits within the health service, was that ever addressed or discussed.
Each pain and problem was dealt with as a separate entity. As each medic tested and prodded to find a physical or structural problem. At no point was my diet ever mentioned.
I can tell you it was not good. I lived on energy drinks, ate too much sugar grabbed fast food, often skipped meals and never used supplements. I ended up with undiagnosed adrenal fatigue and thyroid issues. None of which was discovered through the endless medical tests I underwent.
What I eventually learned, is the body can only communicate with us through our feelings, sadness, overwhelm, fear, guilt or anger. When we over ride uncomfortable feelings for long enough like the fact that we hate our job, have friction in our relationships, do not feel happy or comfortable where we live, we experience physical symptoms like fatigue which escalates to exhaustion and headaches which in turn escalate to migraines until we have to take notice.
ME, CFS and Fibromyalgia in my extensive experience, does not happen to people overnight and does not happen to people who live a totally authentic, balanced self–nurturing life. For many, emotional pain like bereavement, losses, relationship breakdown is just too hard to process. So people find ways to numb the pain, through overworking, over exercising, over socialising, over eating or self-medicating with their comfort food, drink or drug of choice.
Numbing the pain, deadening the symptoms is not the answer. It never could be. I believe that is why our health system is imploding. In the 21st century we require a new model. In 2010 we began creating that new model and training Practitioners to specialise. The result is a multi-media recovery programme, proven protocols and a referral practitioner community.
The recovery results are proven and well established. We are working to introduce it into our health system as a much needed innovation to overcome fatigue related conditions and have the first ever Recovery Conference and Recovery and Practitioner Awards taking place on October 15th 2016.
The Chrysalis Effect Model Recovery Model works through:
- A 24/7 multi-media supported recovery programme accessible online
- Reassurance that recovery is absolute possible
- Understanding of the 6 Phases of Recovery
- Living proof- access to role models and peers who have fully recovered
- An understanding of ‘pre-disposition’ common to people who are prone to developing fatigue related conditions
- Clear education and explanation of the domino effect of symptoms- For example: the impact of the HPA Axis in the stress response on every system in the body
- Understanding of the bio-chemistry of relapse and how mitochondria are affected
- Supported recovery plan from accredited trained professionals
- Measuring progress through qualitative and quantitative methods
- Addressing All 8 Areas essential for recovery
When clients are coached to take action in those 8 key areas, symptoms fall away one by one. This model works not only to rebuild health but to sustain wellbeing long term. It is simple cause and effect. It is a hugely empowering model for healthcare, one in which people are able to take responsibility for their health outcomes through education and support and mentoring from those who have been in their shoes. Having a team of experts in so many disciplines who really understand what drives these conditions and have accredited training in this field, ensures no matter what comes up it can be dealt with. Taking a team approach is the key. A combination of education and expertise literally shining a much needed light on conditions that are both preventable and treatable.
For those of us craving an holistic and fully integrated approach to healthcare the time has come to hospice out the outmoded model that labels fatigue related illness as ‘Enigmatic’ It’s time to midwife in the new and make ‘Difficult to understand and mysterious’ a thing of the past.
Elaine Wilkins BA, Hons, PGCE, ILM, CMI Accredited Coach
As an award winning author and founder of the Chrysalis Effect fully accredited international recovery programmes, Elaine knows first-hand what it felt like to be sent home with no answers and having a 6-year journey of recovery with no cohesive treatment plan or specialist help available. It was only after 5 and a half years she received the help of a Naturopath which was pivotal in her final and full recovery. This has been the driving factor for the incredible body of work that is the Chrysalis Effect.
Contact details – T: 01883 712555 or email mailto:info@thechrysaliseffect.com
With many thanks to Elaine for this article. If you have any questions regarding the topics that have been raised, or any other health matters please do contact me (Amanda) by phone or email at any time.
amanda@cytoplan.co.uk, 01684 310099
Amanda Williams and the Cytoplan Editorial Team: Joseph Forsyth, Emma Williams, Simon Holdcroft, Clare Daley and Helen Drake
*Article referenced Ref: Lloyd AR, van der Meer JWM. The long wait for a breakthrough in chronic fatigue syndrome. BMJ. 2015;350. doi:10.1136/bmj. h2087.
Referral Practitioner Information – http://www.thechrysaliseffect.com/foundationlevelcept
Recovery Information Free E-book – http://www.thechrysaliseffect.com
The Chrysalis Effect Recovery Programme – Free Trial – www.thechrysaliseffect.com/30d
Last updated on 25th August 2016 by
marvellous article.
couldnt agree more with all that has been said.my husband has r.l.s.and it disrupts our lives terribly.no cure just tried 5 different drugs with horrifying side effects and he never gets full night sleep.no answers from dr.
always treating a bit of your body at one time
A great article having been through the same process for the past six years, Put on drugs hating the side effects eventually weaning off them to a minimum . Change of diet taking out refined sugars reduced pain by 50 % and increase in energy .