CFS/ME & Me
CFS & Me: The beginning
Hi, my name is Jeff.
I am a semi-retired project manager, proud Dad and Grandad, and self-published author.
My journey to the here and now began over 11 years ago, after running my second marathon of the year, I began to feel unwell - slightly woozy, my body ached all over and felt depleted, not tired as such but just completely lacking in strength and energy.
At first I thought it was just a bug of some sort, but as the days and weeks passed without improvement I realised that it must be more serious. Neither my GP nor any of the medical professionals I consulted could tell me what was going on - without any tangible test result, the default diagnosis was stress, ‘it’s all in your head’.
Reluctantly, believing that I had no other choice, I accepted this advice and used this opportunity to give into my long-held desire to write. The creative process became a means to relax my mind and temporarily escape from my world of increasing anxiety, pain and discomfort.
You can read more about my journey to CFS/ME diagnosis and recovery in my book On a Scale of 1 to 10 — available in paperback and e-book.
A long-awaited diagnosis
Only through my own stubborn perseverance and the support of my wife did I eventually secure a diagnosis of Chronic Fatigue Syndrome (CFS/ME: Myalgic encephalomyelitis): a complex condition with both neurological and physical symptoms that interplay. It took over 7 years of investigation, a painful trial and error process of elimination, exploring one potential cause after another.
Throughout this long and often lonely journey I learnt so much. Not only am I now managing my condition much better, regaining some quality of life, I am optimistic that I am on the right path toward recovery.
In order to shorten the journey of others to diagnosis and management, I have collated my learnings in one page: the CFS/ME page will give sufferers and those that love them information on symptoms, diagnosis, condition management as well as resources I have found useful over the years.
Please get in touch if you feel anything is missing from this page – I’d love to hear from you!
CFS/ME at the moment
Knowledge about Chronic Fatigue Syndrome (AKA, Myalgic Encephalomyelitis), within the traditional medical, world is sadly lacking.
It is only through the research and dedicated efforts of communities devoted to the condition that more information is now emerging, information that is actually useful.
A number of those who have now fully recovered have detailed their paths and what they have learnt, developing support programmes for those still suffering, but this support often comes at a price (which many cannot afford).
The path to regaining improved quality of life and ultimately recovery is by no means easy, it takes a lot of personal effort and dedication – but armed with knowledge, guided and supported by those with lived experience who better understand the condition, recovery is possible.
CFS recovery video diary
I have recently started a Video Diary for what I hope will be the final leg of my recovery.
Through practicing mindfulness and improved diet, I have made great strides toward managing my symptom severity, downward cycle depth and duration.
These two tactics form two of the three elements of the recovery triangle:
Mindfulness: eg emotional wellbeing and cognitive function
Diet: removing unhealthy ingredients that damage gut health and increase inflammation
Physical Activity: limiting daily exertion to within your current capacity)
It is this a third element which I still haven’t mastered.
Learning to manage my physical activity within my current capacity boundary can be tricky, more trial and error. Without strictly implementing this third element, my recovery has and will doubtless continue to stagnate.
As I’m sure many can relate, I am unable to secure a place on a supported recovery programme, due to financial constraints, meaning I must to continue my self-help approach. It is with this in mind that the video diary came to fruition, aiming to use them to check-in and to hold myself accountable to you, my viewers.
Video 1 : Recovery is possible! is available on YouTube
Comment or get in touch to share your thoughts and experience.
CFS/ME recovery & management
There are two key messages that I have learnt over my journey and , key messages I would want you to take away from this post:
No matter how long you may have suffered with this condition - YOU CAN RECOVER and regain your quality of life.
There is no quick fix - recovery will take time and can only be achieved through YOUR continued effort and dedication.
CFS/ME & Us
As someone who knows all too well the confusion, frustration and despair that accompanies the awful collage of physical symptoms of this condition, I want to do my part for others. I would not want a fellow sufferer embarking on their own lonely journey, to wander lost as I did for nearly 8 despairing years.
Even when a diagnosis of CFS/ME is confirmed, better management and ultimate recovery can only be achieved through understanding, guidance and the support of those who have walked the path before you.
Sadly, whilst more information is now available, this support can be expensive. There are also those charlatans and snake oil sellers who would offer miracle cures, eager to make a fast buck at the expense of those desperate for a solution to their turmoil.
I therefore want to offer something very different: I offer my accumulated knowledge, lived experience and support for free.
Alongside my support, I would like to create a community of those with experience of CFS/ME – direct or indirect – to share knowledge, support each other and maybe even sometimes switch off from thinking about it all.
My dream
My long-term dream is to promote a healthcare revolution.
I envision a space where sufferers and medical professionals alike join forces, giving freely a portion of some of their time, to build knowledge, offer support and self-help techniques advice to maximise quality of life, whatever the condition.
Our current healthcare systems in the Western world simply can’t cope with the population demographic – more people living longer is expensive.
Administration after administration have failed to solve the problem, preferring to either cut services and/or focus funding, all the time trying to treat the symptom instead of addressing the cause.
A focus on pre-intervention ‘preventative’ healthcare through education – like countries such as Finland, Japan and Singapore - would demand for a change away from diets of processed foods, hydrogenated meats, sugary drinks, refined carbohydrates and additives.
If only the general public really understood the truth about the damage long term or excessive intake of such foods does to our bodies, damage which could so easily be avoided, and in some cases even reversed.
With knowledge sharing, I believe there would be a significant increase in demand for more whole and organic food on our shelves, at reasonable prices. The big chain supermarkets will no doubt follow demand when their profits start to reduce, it just takes one large player to take the initiative and seize the opportunity to secure the moral high ground, and maybe long-term market lead.
We really don’t want to have to learn this the hard way.
To start any revolution (or change for the better) you have to start somewhere.
You need a passion and a purpose to drive — CFS/ME is mine.
You also need support from like-minded people — that is where YOU come in.
So let’s build this community together and see if we can start the revolution and force a change for the betterment of current and future generations.
Comment or get in touch to share your thoughts.
