As someone who works with both doctors and CFS patients, there is a big miscommunication between the understanding of what is actually happening to patients and what they are really going through and how they should go about recovery.
Common mistakes and misunderstandings
There is a gap, so to speak, that needs to be filled in the understanding of what the patient is going through in their struggle with M.E/CFS.
Now, first of all I am going to show you the common mistakes doctors make when a CFS case is presented to them. (Please note this is not intended to knock all doctors, however this is written on behalf of the thousands of patients who I am have met who have been misled and misguided.)
We will start with understanding. Knowledge of M.E/CFS is vital in order to have an understanding of what is actually going on. Without understanding, there is no knowledge. With no knowledge comes a messy disbelief in what the patient is experiencing.
These disbeliefs about M.E/CFS have sadly been spread across the globe with many patients still suffering and many going undiagnosed for years on end.
The first problem is the Doctors who don’t believe in CFS at all. “There is no such thing as CFS. Good luck with it.” Again, this goes to the lack of knowledge, or care, or understanding about CFS as a whole.
The phrase, “It is all in your head”, gets thrown around like a tennis ball.
A throw-away comment like, “You are probably just depressed, it’s all in your head”, can do some serious damage – not only emotionally, but physically too. Imagine starting your road to recovery on the back foot, through negative feedback.
The patient who has no answers is desperate for an answer, any answer – as for months on end they have gone through hundreds of blood tests which have shown no results and they have a range of excruciating symptoms: from swollen lymph nodes, sore throat, complete exhaustion, nausea, muscular pain and aches, dizziness to the point of collapsing, irritability, gut problems, night sweats, insomnia, brain fog to name a few. So, understandably, any answer is going to be taken literally.
The importance in understanding
The impact this has on the patient is disempowering. “Here, take this pill and that should fix it”. Whilst medically prescribed drugs can sometimes be helpful to some patients for management, this is not a long-term progressional solution to the recovery of CFS.
Sadly, when clients are dismissed and told it is all in their head, emotional turmoil begins. They start to beat themselves up and the negative spiral begins.
Often along with the dismissal of it being “all in your head”, comes the line, “you’re just lazy, go and exercise more”.
This is another poor assessment and can be detrimental in the long-term recovery of anyone with CFS.
They have been told to exercise more to feel better. Of course that is what they want.. to feel better. So they do what they are told, believing it is the on way forward for recovery. Only to push past their adaptive stress threshold to crash into setbacks and severe relapses, which only exacerbates the onset of symptoms, confusing the patient about what the hell is going on. The doctor said I “should exercise”, but I am feeling terrible, what is wrong with me?
“Sleep it off, you are just tired because you are lacking sleep. Here, take these sleeping pills and you’ll be right”. Again, another band-aid solution from a very surface level assessment. No matter how much sleep one gets with CFS, fatigue is one thing that just doesn’t go away after a good nights sleep. If it did, then no one would have CFS!
These are just some examples of the type of ineffectual, off the cuff diagnoses made by many doctors who just don’t know what else to say, try or do in their allotted 15 minute appointment time.
To clear things up … CFS is not all in your head. CFS is not something you sweat out through exercising. CFS does not get fixed by sleeping it off. CFS recovery is a little more complex then a good nights sleep or a run around the oval. In fact, some patients can’t walk ten metres without struggling with an onset of symptoms. It can be seriously debilitating.
Not all doctors are bad, in fact most aren’t at all. They are human beings just like everyone else. The ones that do not understand are just misinformed and haven’t seen how big the CFS world actually is. The severity of it and the impact it has, not only on the patient, but on their family and friends too. Who can blame them for not understanding. If they haven’t had it themselves, or experienced it with a family member, it is hard to really understand what it is.
Paediatrician Dr Lionel Lubitz of Royal Children’s Hospital stated at the CFS International Conference in San Francisco last year, that the most important thing is to give hope and belief. This is coming from a medical doctor who has literally seen thousands of patients over his many years of practise.
Not only that, he educates patients about a holistic approach. A gradual process of eliminating things that don’t work and building on the things that do, in a safe and effective way.
The biggest problem is the specificity of the patient’s recovery plan.
Doctors who have a small understanding of CFS are great in terms of diagnosis and believing in the patient’s problem, but half the battle is what happens next.
Getting a diagnosis is almost a catch 22. It’s like being told you are going to marry the love of your life – but really, soon you won’t ever see that person again. There is lost hope.
“Okay, so yes you do have CFS, but there is nothing you can do about it”, is also a common statement dished out to patients. On one hand, it is a relief to finally get a diagnosis after the exclusion of many other serious illnesses, but on the other, you are left hopeless as to what to do next.
The recovery journey begins
Sleepless nights spent on Google searching for the cure for CFS. Or going for more blood tests just in case, even though they have already ruled out everything else. Going down the alternative path, taking hundreds of potions, herbs and pills to hopefully get better quick, often spending thousands of dollars on stuff that doesn’t work.
I know all this because I went through it myself. I have experienced both sides of the coin. Being a former sufferer who has now recovered, I have a good understanding of what the missing link has been with regard to CFS for many, many years.
Over the past ten years I have been working to close that misinformed gap. One thing I know for sure is that thousands of desperate people have been told the wrong information and they have believed it.
As Dr Lionel Lubitz said to the leading CFS specialists of the world, “You need hope and belief”.
Doctors need to not only understand that M.E/CFS is real, but more importantly, they need to empower patients about the possibility of improving their condition with educated advice.
Whilst being realistic, it is important to show optimism and share what could be useful and helpful.
One of the biggest problems I had through my recovery was the unspecified advice being given to me – such as, make sure you exercise, eat well, have routine and structure and stay positive. Yet I was debilitated and did not know where to start. Exercise used to be a10k run and now I can’t even walk for one minute before getting tired. How can I possibly exercise or where do I even start?
What routine and structure? How can I have a routine and structure when I can barely do anything?
What does sleep routine mean? What do I do on the bad days and what do I do on the good days?
Think positive? How can I think positive when my life sucks and is practically non-existent.
My road to recovery
There was no specific help on these matters which ultimately were the keys to my recovery in the long-term. I worked specifically on these heath fundamentals of sleep, nutrition, restorative movement to progressive safe exercise, mindset and stress/anxiety management over the space of four years. Eventually, through trial and error, I built up my strength, stamina and overall well-being. I rebuilt my health and my life. I went from being completely bed-bound and missing over 200 consecutive days of high school – I was 17 at the time. I used to love to run and play sport but with CFS, walking from my bedroom to the back yard was a marathon. I had to forego many special family events due to M.E/CFS. At my worst, I thought what was the point of living. CFS consumed my life and there was very little light at the end of the tunnel. Now I am able to guide others through their own recovery through various structured CFS recovery programs.
After CFS, I went on to study health science for a few years to gain a better understanding of the human body and mind. I worked alongside Dr Lionel Lubitz to develop the first, holistic, practical recovery program (both online and face to face) in the world – we now reach over 29 countries and have helped thousands of people.
I write this not to boast, but to show you the biggest gap in the CFS world – PRACTICAL HELP. What to do on a daily basis, what to when things aren’t going well and what to do when things are going great. Self-help management is the key to personal empowerment.
There is a time and place for everything. But one thing sufferers need is practical, specific help on how to improve their condition on a day to day basis.
The negative dark world that CFS once lived in has definitely changed to a lighter, more positive shade over the past ten years. It is my passion to not only show people that M.E/CFS is real and prevalent in today’s world, but, more importantly, that there is hope and there is a way out of it.
A summary of ME/CFS
Chronic fatigue syndrome (CFS) is a complex medical condition, characterised by long-term fatigue and other symptoms. These symptoms are to such a degree that they limit a person’s ability to carry out ordinary daily activities. CFS may also be referred to as systemic exertion intolerance disease (SEID), myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), or several other terms. Quality of life of persons with CFS can be extremely compromised.
Biological, genetic, infectious, and psychological mechanisms have been proposed, but the cause is not understood. Diagnosis is based on a person’s signs and symptoms. The fatigue is not due to ongoing exertion, not relieved much by rest, and is not caused by other medical conditions. Evidence suggests that counselling, a gradual increase in exercise, and the medication rintatolimod is useful in some people. In 2012 the FDA considered that evidence for the safety or benefit of rintatolimod to be insufficient to approve its use in the United States.
Estimates of the number of people with the condition vary from 7 to 3,000 per 100,000 adults. About one million Americans and a quarter of a million people in the UK have CFS. Fatigue is a common symptom in many illnesses, but the fatigue experienced by persons with CFS is comparatively rare. CFS occurs more often in women than men, and is less common among children and adolescents.
There is agreement that CFS has a negative effect on health, happiness and productivity. However, various physicians’ groups, researchers and patient advocates promote differing terminology, diagnostic criteria, proposed causes and treatments, resulting in controversy about many aspects of the disorder. The name “chronic fatigue syndrome” is controversial; many patients and advocacy groups, as well as some experts, believe the name trivialises the medical condition and they promote a name change.
For more information on CFS health, recovery programs,help and a free 9 point checklist on what to best do for recovery click here.