Today, May 12th is a date many people around the world will celebrate as International ME/CFS Awareness Day. It’s also the birthday of Florence Nightingale, and it is believed that she also suffered from this illness, hence the date being chosen for International ME/CFS Awareness Day is on the same day.
As I suffer this illness and have done for nearly 3 years, I have found myself doing intense research, and I am compelled to share some of my research and insights on what I think is the most controversial illness around.
M.E./CFS According to Medical Specialists
M.E. stands for ‘Myalgic Encephalomyelitis‘ and CFS stands for ‘Chronic Fatigue Syndrome‘. According to actionforme.org.uk, this illness is “a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems”.
nice.org.uk says that “Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) is a relatively common illness. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. CFS/ME places a substantial burden on people with the condition, their families and carers, and hence on society”.
Just a few of many symptoms include;
. muscular pain/fatigue, joint pain and severe headaches
. poor short-term memory and concentration, and difficulty organising thoughts and finding the right words (“brain fog”)
. painful lymph nodes (small glands of the immune system)
. stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipation, diarrhoea and nausea
. sore throat
. sleeping problems, such as insomnia and feeling that sleep isn’t refreshing
. sensitivity or intolerance to light, loud noise, alcohol and certain foods
. psychological difficulties, such as anxiety, depression, irritability and panic attacks
. less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature.
Controversy, Confusion and Stigma
As M.E/CFS can be traced all the way back to 1750, it didn’t really become accepted as a “genuine illness” until the 1980’s. Although M.E/CFS has become more widespread with an estimated 17 million worldwide suffering from this disease (2011), it’s baffled the best of speacialists as to where this illness has come from. In 2011, a survey took place, and 84% of members of the Association of British Neurologists didn’t view M.E./CFS as a neurological condition. To this day, it’s still considered not a disease by many being labelled “all in the head”.
Reasons why I think people become confused about M.E/CFS and regard it as not a genuine illness are;
. Chronic Fatigue Syndrome – The word ‘fatigue’ is such a common word nowadays, being present in almost every disease. Also, a lot of people refer to fatigue as tiredness. That’s why someone who has M.E./CFS will hear responses like “I’ve had that“, “We all get tired“, “You’ll be okay. A bit of rest will do the trick“, and the best one of all, “You just have to push through it“. I don’t think you can blame people for thinking and saying these things. After all, they’ve looked past the ‘Syndrome’ part.
A syndrome is “a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms”. (Oxford dictionary). So as you can see, fatigue is just a little part of this illness so to speak. And when one includes the ‘syndrome’ part to the ‘fatigue’, they should see the larger picture.
Also, you’ll find there’s confusion when it comes to Chronic Fatigue and Chronic Fatigue Syndrome.
I’ve come across titles on the internet and YouTube such as, “How I Healed My Chronic Fatigue Syndrome”, when ideally they should’ve used ‘Chronic Fatigue‘ or something more clear that separates M.E./CFS from the other.
In the scenario of Chronic Fatigue, the individual has probably suffered a state of ‘burnout’ or ‘extreme tiredness’ caused by a prolonged state of stress. So what’s happened, the stress (physical, environmental or emotional) has become too demanding on the adrenal glands, and therefore the adrenal glands can’t produce enough vital hormones to maintain homeostasis, causing fatigue and other symptoms related to the fatigue. This is called Adrenal Fatigue or Adrenal Fatigue Syndrome. (Hasn’t been scientifically proven).
In this case, it is advised that good rest and as much stress removed as possible should see the individual regain vitality and energy. Techniques such as mindfulness/meditation, plenty of sleep and a ‘good diet’ would play a part in this recovery/healing process.
As you can see it’s quite simple for people to think they’ve had M.E./CFS, when in fact they haven’t. There’s a total difference between M.E/CFS and Chronic Fatigue or Adrenal Fatigue.
However, I believe that rest is absolute paramount and mindfulness/meditation could be applied as an outlet for someone with M.E/CFS to regain some sort of mental clarity and possible relief of physical symptoms. But it’s such a complexed illness, that I believe there’s not one protocol that fits all.
. “You don’t look ill” – I was watching a programme on TV the other day, and there was this young man who presented himself in nice clothes with a clean shaven face. More importantly, this young man was vibrant, happy and always had a smile on his face. Not so long after, I came across a heartbreaking statement from this man’s family, stating that he had taken his own life. He never recovered from his mother’s death at a young age.
I really didn’t expect to see this awful news. It just goes to show that suffering and illnesses more often than not can not be seen by the naked eye. The same goes for people with M.E/CFS. For those who are fortunate enough not to be bed-bound, they tend to ‘look themselves’ and somewhat ‘act themselves’. But the truth is, inside there are multiple organs and systems that aren’t working like they should be, and the individual is affected dramatically that others won’t see.
. There’s no single blood test to diagnose M.E./CFS – Getting a diagnosis for M.E./CFS can often be a lengthy and frustrating process. Majority of people find that their blood tests come back within the ‘normal range’, and because the symptoms of M.E/CFS are alike other symptoms of different illnesses, the healthcare provider has to rule out other possible illnesses or conditions first in order to get a diagnosis for M.E./CFS.
The Cause and Affect of M.E/CFS
What exactly causes this illness is unknown, however there is a lot scientific evidence of multiple abnormalities which then causes a ‘loop effect‘ on other vital organs/systems, or otherwise known as ‘secondary symptoms‘.
Below are a few abnormalities found in multiple tests done regarding the M.E/CFS;
. Brain abnormalities – “Brain scans have demonstrated a range of abnormalities including changes in blood flow to key parts of the brain, which could help to explain the cognitive dysfunction (= problems with short-term memory, concentration, etc), as well as other brain-related symptoms such as poor temperature control and pain”. (meassociation.org.uk)
. Muscle abnormalities – “Abnormalities involving skeletal muscle biochemistry in ME/CFS, where there’s an abnormally prolonged production of lactic acid following exercise in some people, were first described over 30 years ago in The Lancet. This research, in which I was involved and used my own leg muscle, was carried out in Oxford. It examined what happened at a biochemical level during exercise using magnetic resonance spectroscopy (MRS).
Since then, structural and functional abnormalities involving the mitochondria – a key part of the cell where nutrients are converted into an energy-carrying molecule called adenosine triphosphate (ATP) – have been reported in a number of research studies”. (meassociation.org.uk)
. Endocrine abnormalities – “One of the most consistent research abnormalities to be seen in ME/CFS involves what is termed a down- regulation of the hypothalamic- pituitary-adrenal (HPA) axis. The hypothalamus and pituitary are tiny glands inside the brain that play a key role in the control and production of hormones elsewhere in the body.
In the case of ME/CFS, there seems to be a defect in the output of the hormone cortisol from the adrenal glands, which sit above the kidneys. This lowered level of cortisol (= hypocortisolaemia) could be related to symptoms such as fatigue and low blood pressure.
The hypothalamus also acts as the body’s thermostat in relation to appetite, sleep and temperature control – all of which are affected in ME/CFS”. (meassociation.org.uk)
. Mitochondria dysfunction – “Our observations strongly implicate mitochondrial dysfunction as the immediate cause of CFS symptoms. However, we cannot tell whether the damage to mitochondrial function is a primary effect, or a secondary effect to one or more of a number of primary conditions, for example cellular hypoxia or oxidative stress including excessive peroxynitrite. Mitochondrial dysfunction is also associated with several other diseases and this is not surprising in view of the important role of mitochondria in almost every cell of the body, but this fact appears to have been recognised only in recent years”. (ncbi.nlm.nih.gov)
. Mental health issues – Many patients find that their congnitive and mental state become worse due to many complexed factors. Hormone imbalances and mitochondria dysfunction can cause one to feel worse mentally and emotionally.
Also a variety of emotions such as confusion and hopelessness can arise due to sudden onset of the illness. It’s important that the healthcare provider/GP is made aware of any changes regarding mental health.
Treatment and Management Options
There’s no known cure for M.E./CFS, although there have been occasions when people have become “well” or “cured“. Even though there’s no known cure, there are multiple options such as certain types of therapy and medication that relieves certain symptoms and enables the individual to cope or manage with daily symptoms;
. CBT (Cognitive Behavioural Therapy)
. GED (Graded Exercise Therapy)
. Painkillers (prescribed or over the counter)
. Allergy treatments
. Antiviral drugs
. Hydrocortisone and other hormonal treatments
. Immunological treatments
. Supplements (Vitamins and minerals).
My Thoughts Towards M.E./CFS
Coming to the end of what’s been quite a long post, I’m sure that you can see that M.E./CFS is a complexed and more often than not a confusing illness.
As I’ve mentioned in the beginning of this blogpost, I’ve spent a large quantity of time digging deep into the science of the human body, and I’d like to finish off where I provide my own opinions and insights towards M.E./CFS.
Mind/Body = Whole Being
I’ve always been drawn to the mind/body connection. In fact, I don’t think it’s a ‘connection’, because in order for something to connect, they must be separate. And when the human body (mind included) is looked upon properly, one will find that there is no separateness within the human body. The body only becomes separate when the preferred language is labelling different parts of the human body.
I feel as science has advanced and the focus is more on treating singular parts of the body, the mind has been left behind. I haven’t come across many specialists or doctors that speak about the importance of the mind, even though research and evidence proves that one’s emotional state has profound effects not just on the mind itself, but also on the physical body;
“And we’re spending billions of dollars on researches into cancer and so on that are never going to get us anywhere, because we ignore the life stresses that very often, if they don’t by themselves cause, they certainly contribute in a major way to the onset of disease. But we’re not looking at them. We’re not dealing with them. And we’re leaving people without the appropriate tools to restore their own health”. – Dr. Gabor Maté
“The separation of mind and body is an erroneous view, incompatible with science. Personality traits—that is, psychological patterns—conduce to disease because the brain circuits and systems that process emotions not only exert a profound influence on our autonomic nerves, as well as our cardiovascular, hormonal, and immune systems: In reality, they are all conjoined. The recent, but no longer new, discipline of psychoneuroimmunology has delineated the many neurological and biochemical mechanisms that unite all these seemingly disparate systems into one super-system“. – Journal of Pediatrics
In summary, therapy treatments, medication, rest and other approaches are really important and can be vital in individuals who suffer from M.E./CFS. But I believe that emotional well-being is just as important as physical well-being, and that’s why I think specialists and doctors are found puzzled by this illness. If only they incorporated a relationship with the patient where the emotional state is explored just like the physical body is explored, I think we’d see success in M.E./CFS.
Click to access MEA-What-do-we-know-about-the-causes-of-MECFS-Shepherd-2015.pdf