Chronic Fatigue Syndrome (CFS) is a condition that affects over 250,000 throughout the United Kingdom – and with such a lack of clear diagnosis, treatment and recovery available for fatigue-related conditions such as these, that number is only likely to grow.
A focus on treating symptoms as opposed to finding the root cause of a condition has left thousands of people with these debilitating and life changing illnesses.
Our blog this week is provided by Elaine Wilkins, an award winning author and founder of the Chrysalis Effect Recovery Programmes. The programme sets about transforming the approach to treating ME, CFS and Fibromyalgia from a conventional ‘one size fits all’ model that does not address all of the factors, to a holistic approach that looks at each case individually; understanding that the mind, body, environment and lifestyle & dietary choices of an individual are all part of the equation. In this week’s blog Elaine poses the question – Could life-changing health issues such as eating disorders, addiction and OCD benefit from a similar model?
Elaine will be hosting a webinar on Monday 22nd January at 11:30am titled ‘Lifestyle Medicine in Action – Join the Transformation‘ – to find out more and to join this webinar for free please click here.
Chronic Fatigue Syndrome and Fibromyalgia – the Perfect Storm to Herald a New Healthcare Model?
If you have experienced Chronic Fatigue or Fibromyalgia or consulted with a patient suffering from the myriad of symptoms that are the trademark of these illnesses, you will be aware of the level of misinformation and arguments about the causes and prognosis for sufferers.
Sadly, this leaves many patients ending up at the centre of work tribunals and job losses with the prospect of a post code lottery and inconsistency in the NHS treatment that is available to them. There is no cohesive treatment plan.
On top of this there is the elephant in the room. Bitter arguments divide sufferers and health professionals. It begins with what these illnesses are called and seems to focus mainly on a split between those who believe the illness has totally physical origin. And those who are looking at the psychological and emotional causes.
The former group campaign for funding into bio-medical research and have total conviction that this has a purely physical cause. Dr Charles Shepherd is medical advisor for The ME Association. His enthusiastic review of the 2017 ‘Invest in ME’ conference, concluded that presentations covering treatment were largely focused on clinical trials taking place in Norway into use of Rituximab and Cyclophosphamide; which are immune suppressant drugs for cancer patients and Suramin; which is prescribed for both African Sleeping Sickness and Autism.
So, who is correct?
Having been through my own 6-year recovery journey and having worked in this field now for over 9 years. I can unequivocally say that while these opposites wage war, positive recovery results are achieved when the client or patient understands that there are many elements at play in a downward spiral of illness. Mind, body, environment, lifestyle, dietary factors, relationships and the pre-disposition and susceptibility of a person are all part of the picture. Nothing happens in isolation, everything is interrelated. This perspective fosters an open mind into what may have contributed to or pre-ceded their illness empowering people to utilise the support they need to make changes. This directly impacts them physically, emotionally and environmentally.
At recent the Chrysalis Effect ‘Celebrate Recovery’ event, it was clear from those who have fully recovered that the biggest problem with their CFS and Fibromyalgia recovery was that the conventional model they had initially accessed to treat them simply does address all the factors at play which is why it does not work for these 21st century multi-factorial illnesses.
Why? – Well many reasons including:
-
- The 8-10 minute appointment gives doctors no time to address causes.
-
- Long waits for diagnosis, no explanations while constantly waiting for referrals to individual specialists.
- Drugs being offered to manage symptoms – a sticking plaster approach.
- Patients can end up spiralling into a long term chronic state of debilitation which could and should be intercepted.
- Complementary approaches have been largely dismissed by conventional medicine.
‘The Perfect Storm’
When I was bedbound with ME it was the darkest time of my life. But after winter eventually comes Spring. It is during our winters that new seeds of change are germinating. I learned first-hand that the endless waits for appointments and referrals created more stress and made me worse. A recovery focused fully supported treatment option was neither accessible nor available.
Once we harnessed the incredible technology available all that has changed. We can take recovery support instantly to the patient in their own home and support GPs as we surround them with online resources and a community of positive role model support. It got me thinking about the current challenges in treating eating disorders, addiction, OCD, failings of treating parts of the body as separate entities and prescribing drugs as the first option. These are complex and life altering illnesses, which are often viewed as mysterious and difficult to treat. My question was ‘Could these health issues benefit from a similar model?’
I am not alone in asking that question. The time has come. From the erudite powerhouse, that is the comedian, Russell Brand; lobbying parliament for drug free holistic approach to recovery from addictions; to forward thinking GPs and NHS transformational leaders who are open and willing to bite the bullet and drive that new model.
Dr Rangan Chatterjee, from BBC’s ‘Doctor in the House’ fame, is a leading light in this movement. He enthusiastically conveys the need to put down the prescription pad and embrace a collaborative and holistic approach to health. He was frustrated at seeing patients stuck at home with debilitating illnesses like fibromyalgia that conventional approaches were not helping. So, it has taken illnesses that don’t fit into a box to shake things up. To create ‘The Perfect Storm’. The great news is, Dr Chatterjee has taken up the mantle to train GPs to look outside of their current practices to embrace complementary practitioners as their colleagues and follow his lead in which he recognises nutritional therapists, osteopaths, yoga and mindfulness teachers et al as primary care providers. Wow!
In 2009, The Chrysalis Effect set about transforming the approach to ME, CFS and Fibromyalgia. That included engaging with and training practitioners to work in a new way. It created a blueprint that moved the focus from symptom management to recovery and optimising wellbeing. It had to be delivered in the private sector because never the twain shall meet. Now, in the NHS meetings I present to, I can at last feel the long-awaited shift in attitude. It is incredible to be part of the new paradigm of health that complementary field has yearned for.
Elaine Wilkins BA, Hons, PGCE, ILM, CMI Accredited Coach
Elaine Wilkins BA, Hons, PGCE, ILM, CMI Accredited Coach is the award winning, founder and author
of the Chrysalis Effect fully accredited Coaching programmes for Specialist Practitioners. After
experiencing 6 years of illness with CFS Elaine is passionate about working with practitioners to shortcut
recovery for these misunderstood conditions and is heading up a pilot team for the NHS for this proven
intervention.
Download this free 12 point checklist to ensure your Practice is set Up for Recovery Success with ME, Chronic Fatigue Syndrome or Fibromyalgia Clients – click here.
Free additional short videos included as a bonus – for a free 30 day trial of recovery programme – click here.
Contact details – T: 01883 712555 or email 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 (Clare) by phone or email at any time.
clare@cytoplan.co.uk, 01684 310099
Clare Daley and the Cytoplan Editorial Team
Last updated on 7th February 2018 by cytoffice
An interesting article. My wife has been suffering from diagnosed FM for 9 years and has suffered some real lows including using a walking stick for 18 months. She has always worked full time though however exhausted and pain stricken she is. Luckily our GP recognised FM and did a lot to help although that also involves drugs. As part of an NHS pain management clinic a few years ago she was given acupuncture as well as CBT which seemed to help but of course this was only for a very limited time on the NHS. Finally last year she decided to return to acupuncture and massage albeit at her own expense and attends weekly sessions; they have made a staggering difference to her overall wellbeing and mobility. She is now adding in some gentle gym work and so far so good. Not ready just yet to ditch the drugs or run a marathon though 🙂
Glad you have recovered. Good article but it doesn’t go far enough in terms of diagnosis issues. For example my CFS diagnosis came from my GP after 8 YEARS of being told modern life was hard. In the end I refused that response and was told then thst it must be CFS and to make life changes. Thst was it in totality. I have since left the job I had only managed to do part time over the last 8 years. Whilst I am not bedbound I spend much of my day wrapped in a blanket on the sofa. A 15 minute slow cycle in the gym yesterday means I was unable to take my kids to school. This lack of support and even interest is totally unacceptable from the medical profession.
Hi Sarah,
Thank you for kindly sharing your experience. 8 years is such a long frustrating time to wait for a diagnosis, and something we hear all too often. People find their lives slowly shrinking, energy lacking more and more, and everyday activities reduced to the bare minimum, the joy of life disappearing.
At The Chrysalis Effect we understand the isolation experienced, the guesswork involved trying to get your life back on track when there is no cohesive recovery-focused treatment plan being offered via the medical professional.
The good news Sarah is that for the last 9 years The Chrysalis Effect has been successfully supporting people in the same situation as you back to full health. We can explain the 6 Phases of Chronic Exhaustive conditions, identify what has bought you to this point, and the way back out again! How does that sound to you Sarah? What would you just love to be doing?
With the NHS focus on Primary Care Providers currently happening we are delighted they are now wanting to understand our approach, to implement our protocols. It is only a matter of time before these conditions can be intercepted on the first visit to the GPs surgery. In the meantime please feel welcome to visit our website http://www.thechrysaliseffect.com and if you are drawn towards our approach have a look at our 30 day free trial. “Nothing to lose, everything to gain”.
If you have further questions please send them over to admin@thechrysaliseffect.com where one of our team will be happy to answer them for you.
Kind regards.
Elaine
I am a retired physiotherapist who worked closely with Dr Claude Lum (now deceased) who worked closely with patients with chronic hyperventilation.
He referred patients to me for breathing retraining and relaxation techniques.
This was very successful for many patients, but not all and I always felt that this was not the total answer. I worked in the private sector and my patients generally had a session for one hour and so there was time to listen to their problems lifestyle etc. I think this helped them a lot.
I am really interested in the approach and work you are doing.
Thank you for an interesting and helpful article, though the webinar and downloads appear to be for the professional? Under the heading: “Why? -well many reasons incl.”…… Points 4 and 5 are particularly relevant to me having been diagnosed with ME/CFS nearly 20 years ago. In that time even the complimentary practitioners I’ve seen have struggled to try and treat this condition. At one stage I was diagnosed with Lyme disease (who knows, they are very similar – the tests for Lyme being rather unreliable and in any case the doctor treating me was reported to the GMC for practicing alternative medicine!) My G.P. has been unable to help apart from issuing anti-depressants for a long standing sleep disorder,(without success). * see below. Details of a webinar held by “Action for M.E.” were sent to him but this was not mentioned in a subsequent visit. I was simply asked “What did I want to do?” I could have said any of the helpful programmes that are around today based on mind/body strategies used by holistic practitioners. But I had no answer because none of these are available on the NHS. Whilst I was not referred there myself a local centre for ME/CFS patients based on the original CBT/Exercise plan was closed last July – due to lack of funds. At present I am doing an online programme, of the type mentioned above. It is very good BUT it is time consuming, (therefore a struggle to fit into the essentials of daily living) complex (for the foggy brain) and somehow impersonal, also the “disclaimer” comes in the form of constant reminders to seek help with medicines/supplements etc. from orthomolecular/naturopathic practitioners. Even if funds are available that often involves travelling some distance. I’ve learned so much about the condition, mostly from books and the internet but in the end that “face to face” personal professional help is important especially where there is access to your personal and family history. There are some things that do not lend themselves to the internet and I think medical treatment is one of them. That may be a generation thing (I’m 72) Nevertheless I believe in self-help and am encouraged by the many stories of people who have recovered regardless of their age and how long they have had the condition. * I have tried 5-HTP myself but with minimal success. Thanks very much for your time.
Hi Christine,
I am so glad you found the article helpful and interesting.You have raised very valid points that many others will relate to I’m sure.
The current disjointed system of treating these conditions are incredibly frustrating for all, not least the over-stretched medical profession. Our GPs have such limited time,few helpful resources to offer, and very often you find yourself repeating the same information/history to the same GP or to each different consultant you see. So no continuity!
With the proven results we have been consistently achieving it is exciting to have the NHS wanting to meet us, to better understand our tested protocols. Hopefully in the near future these conditions will be stopped in their tracks as the GPs will have our methods to implement.
While these systems are put in place how wonderful would it be to have the support from those who understand the complexities involved, to be given a step by step plan for recovery including the 8 essential elements that require being addressed for recovery to be achieved?
I am delighted you are currently attempting an online recovery focused programme. However if it continues to be too time-consuming and a struggle to fit into your normal days activity then by all means have a look at the 30 day free trial we offer on our website http://www.thechrysaliseffect.com. We appreciate that for some the 1-1 approach works best and we have many Practitioners around the UK (and Australia!) who are happy to support face to face, if locality allows.
If you have any further questions Christine please send them over to admin@thechrysaliseffect.com where one of our team will be happy to answer them for you.
Kind regards,
Elaine
This links well with your Hypothyroid article. I was diagnosed with CFS 35years ago following glandular fever. I just about coped, bringing up 3 children but resting whenever I could. I had a relapse about 10years ago and my GP did a few tests and then said “you’ve got Chronic Fatigue, go back to work”!(I had been off work for 6 months, been in hospital with heart symptoms, but no explanation as to why I felt so ill). I then saw a private GP/ complementary doctor who correctly diagnosed Hypothyroidism despite a normal TSH. I needed T3, T4 on its own didn’t work.
Maybe I had Hypothyroidism all along following Glandular Fever, I’ll never know but this message is, try to get a proper diagnosis if you can and don’t be put off if all your blood tests come back”Normal”.
What an amazing article, thank you, at last a voice in treating these debilitating conditions. I have Transverse myelitis, a rare spinal cord illness that strikes any age group and some never recover more than being wheelchair bound (babies and children too). It is three years since my onset and my Neurologist still isn’t sure if it is that, he is sending me for another
MRI scan next month and my next appointment to get the results is in December to get the results, whitch makes me feel very unimportant. I was sent home from hospital with that TM diagnosis written on my discharge paper and I had to look it up on Google to find out what it was. The only phsycological help I get is from the TM support group (group help and advice is invaluable but sometimes depressing). 2 years ago I sought help privately from a nutritionist, neuro physio and a homeopath practitioner and it has all worked in me getting the best results and a good recovery. My GP has never come across the illness before, so I do not get any support from her. Fortunately, I am now leading a fairly normal life, but it’s mostly due to me being retired and able to rest up when I need to and be in a position to pay for private practitioners. My heart goes out to those in a different position to me, having to work, look after a family, and struggle for help and support. It is TM awareness day tomorrow, I hope by writing to you, it may one day be included under your umbrella of raising your amazingly sensible approach to all health professionals. Good luck with your quest!