The words of the iconic Queen song – “I want to break free !” – must be the mantra of people around the world who suffer from chronic fatigue, long covid, anxiety, agoraphobia and other similar conditions. Orthodox medical approach to treating chronic fatigue CFS (which used to be called ME) has tended to be regarded as ”something you just need to learn to live with“. But, my guest this week, Jan Rothney, is on a mission to demonstrate that recovery is certainly possible and not to resign yourself to thinking nothing can be done. And Jan should know – she has lived with Chronic Fatigue Syndrome (CFS) for many years but went on a journey of learning and discovery, and has managed to achieve recovery status. She has just published her book, ”Breaking Free” to help fellow sufferers get on the road back to recovery. Let’s welcome Jan onto the blog …. Hi Jan!
Hello! I am Jan Rothney, author of the book “Breaking Free: A Guide to Recovering from Chronic Fatigue Syndrome and Long Covid” and creator of the online training programme “Reset to Thrive”, which complements the book and is a great visual aid to recovery, as well as showing people how to live life more healthily, whether or not they had chronic fatigue syndrome (CFS) or Long Covid fatigue symptoms. My background was working as a behaviour therapist, lecturing in health and social care and, after recovering from chronic fatigue syndrome myself and losing my job, I ran a clinic for recovery from chronic fatigue syndrome and related illnesses.
What made you decide to launch your book, “Breaking Free”?
I decided to launch the book because I was retiring from working as a practitioner and wanted to pass on all my information and expertise; being able to offer my expertise in an modestly-priced book meant recovery could be affordable for anyone. Also, during the pandemic I realised that so many symptoms of Long Covid are similar to those of chronic fatigue syndrome. I believe my approach could also help those suffering from Long Covid too. Indeed, it is estimated that 25% of Long Covid patients will be diagnosed with CFS.
Reading your book “Breaking Free”, I thought to myself that the guide to recovery after Long Covid and Chronic Fatigue could also be applied to a certain extent to deal with anxiety/panic attacks/agoraphobia too. What are your top tips to help sufferers get back on the road to recovery?
All the tools in the book are useful for other conditions but my own experience is that people with mental health issues also need support from a practitioner or therapist. However, the book is really useful for people who feel they are burning out – are “Tired All the Time”, struggling to keep going – and for those with fibromyalgia.
My top tips would be to know it is a recoverable condition, to learn how to override the primitive survival system, to focus on where the body is working rather than when it isn’t, to relearn how to approach triggers or events that you used to take for granted (neutral events) and which now feel hard or threatening, and to massively celebrate successes, no matter how small. Crucially, the malfunctioning system needs to know you are safe, not by avoiding life but by approaching everything the right way and making the environment safe. Then it will rebalance itself and revert to the healthy functioning system, that lets your body heal, repair and thrive again.
After suffering from Chronic Fatigue Syndrome (CFS) for many years, and being faced with the orthodox medical approach “to learn to live with the condition” – how and when did you realise that full recovery was indeed possible?
When I first had CFS I recovered on my own. I always assumed I would recover because I realised that my protective system had taken over to shut down my body. Fortunately I knew how to change that because of my background working with clients to rebalance this system. My GP was instrumental in my recovery because he always told me I would recover, no matter how many times I crashed and ended up back in bed for days or weeks. His faith gave me a lifeline when I was at my lowest points.
This is why I was so shocked when I relapsed a few years later, and was referred to the new specialist CFS clinic, wherethe official line is “there is no cure or treatment, and you have to learn to manage the condition”. In fact, they wouldn’t put me forward for group support until I said, “I accept I will never recover”.
In the book I explain how professionals’ beliefs about the condition and practise, have powerful influence on outcome and recovery, so I wrote the book as much for professionals as sufferers. Thankfully, I found a complementary practitioner who reminded me I can recover and got me back on track. Heading for a further relapse a few years later, I realised I had to change how I do life, in order to stop relapses forever and to stay healthy. Part Two of the book is about how to be completely healthy and symptom free. I do not manage the condition – I got rid of it many years ago.
As you now run a CFS clinic and are a health & social care lecturer, what is it about your job that you enjoy most or which gives you the most satisfaction? What is the downside?
I absolutely loved my job as a practitioner, and previously as a lecturer because it is so rewarding to see people recover and achieve. The downside was that I didn’t have enough time to spend with my family and to care for my grandchildren, so I retired. The book has been wonderful, as I get lovely comments from people on how much it has helped them. One email today said “your new book is absolutely brilliant; I’ve been reading at every opportunity and is going to be a massive help on its own – it is going to be my bible to recovery for a long time! Thank you.”
Is ME & CFS the same condition?
Yes. The term M.E (which stands for myalgicencephalomyelitis), was replaced by the term chronic fatigue syndrome (CFS) so, yes, they are the same condition but there is a lot of controversy in the M.E world about the new terminology and they still refer to it as M.E. However,myalgic encephalomyelitis literally means muscle pain and inflammation of the brain and spinal cord, typically due to acute viral infection, but there is no evidence of this so I use the term CFS and clarify that fatigue is not tiredness but the body shutting down.
Growing up, did you always want a “people related” or “health based” career or did you want to pursue a completely different direction?
I have known since I was 4 or 5 years old that I wanted to work with people and have been really lucky to do the two things I love best, teaching and being a practitioner for health and social care.
What are the common problems/symptoms that new patients ask advice on and what do you suggest they should try instead?
Typical symptoms clients with chronic fatigue syndrome have are: flu like symptoms, unrefreshing sleep, aching muscles, sore throat, swollen glands, complete exhaustion, post exertion malaise, brain fog, difficulty with speech and social interaction, pumping heart, temperature fluctuations and hypersensitivity to touch, sound, light, taste or smell. Similar symptoms are exhibited with Long Covid as the body’s defence responses to an infection don’t turn off and people get stuck in the “sickness loop”. Clients with fibromyalgia typically have pain in specific joints and tender spots. People with Burnout or Tired All the Time often have complete exhaustion but not necessarily the sickness defence responses; however, they will often have signs that the body is struggling, such as IBS, skin rashes, susceptibility to infections, or sensitivity to foods and chemicals such as household products or make up. I teach clients how to break the survival system dominance and, instead, switch to the reset to thrive mode.
Is your book, “Breaking Free” available to purchase worldwide?
Yes, the book is available worldwide from:
• The publisher, Arkbound: https://arkbound.com/product/breaking-free-by-jan-rothney/ – and they are offering a 20% discount for the next 6 months if you order through their website. To claim your 20% discount, use the code: BreakingFree2022.
• The Book Depository:https://www.bookdepository.com/Breaking-Free-Jan-Rothney/9781912092154
• Other internet booksellers, including Waterstones
• Bookshops – you can order the book at any good high street bookshop
• and as an ebook from https://www.amazon.co.uk/Breaking-Chronic-Fatigue-Covid-Symptoms-ebook/dp/B09ZT6PJC9 ( please leave a review if downloading the ebook!).
Personal now – What outfits and shoes would you normally be found wearing?
I normally wear jeans, tops and cardigans or jumpers. When I run a clinic, I usually wear a smart dress. You can most often find me in walking boots or stilettos!
Do you have any favourite shops or online sites?
I am trying to be more environmentally conscious and buy ethically sourced materials, so I buy cashmere or linen and cotton clothes from www.purecollection.com, and tops from baukjen.com and www.bambooclothing.co.uk. My latest jeans are Salsa Secret, although I need to check their fairtrade and environment rating.
What’s next on your clothes/shoe wish list?
Next on my list is sandals and a couple of thin strap linen tops from Pure Collection for summer.
Boots or Shoes?
Boots. I love my walking boots as they fit like a glove and are great for walking the South West Coast Path or the beach with my dog. I also love Dubarry ankle boots and wear them all the time, unless it is summer.
Links you would like to share:
Thank you Jan for chatting to us today and I’m sure you’ve inspired many sufferers to strive for recovery. Thanks also for the copy of your book for reviewing purposes – I found it most interesting – good advice and workable goals.
All photographs have been published with kind permission of Jan Rothney.