In writing this
article on Chronic Fatigue Syndrome causes, I wish to state that I am not a medical practitioner. I am simply someone who
has lived with CFS/ME for 23 years. 'Simply' doesn't seem quite the right word!
As much as those of us living with CFS or ME desperately wish for an answer to the question "Why do I feel so ill?" the reality is that it is more likely to be ourselves answering someone else's question.
I hope this CFS article will help you give some ideas on how to answer the question: What is the cause of Chronic Fatigue Syndrome?
Suggestions for a Chronic Fatigue Syndrome causes
Contents continue below....
Subgroups suggesting possible Chronic Fatigue Syndrome causes
Alternative healing therapy may provide clues to Chronic Fatigue Syndrome causes
The need for a diagnostic marker for CFS
You might also wish to read:
CFS news shares research into CFS including possible Chronic Fatigue Syndrome causes
Diagnosis of CFS - what are the different CFS criteria? What are the CFS symptoms which lead someone to be diagnosed.
Other chronic illnesses with overlapping symptoms to CFS.
Chronic Fatigue Syndrome causes are not known at this time though the recurring suggestion is that a virus is responsible.
In the following paragraphs I put forward some commonly suggested causes of CFS. I repeat again that I am not a medical expert.
Epstein Barr Virus
The Epstein Barr Virus (EBV) causes Infectious Mononucleosis. This is often referred to in the USA as the illness Mono and in the UK as Glandular Fever.
Epstein Barr Virus has been put forward as a possible CFS cause as many people develop CFS following an outbreak of EBV. Yet many patients have not had EBV.
Magnesium deficiency is common in those with CFS. It is likely that magnesium deficiency is not a CFS cause so much as a result of whatever is happening within the body to cause the illness.
For myself, I consistently tested for low magnesium throughout the years of severe illness. I suspect I would continue to do so, though I no longer pay to have the test done.
The blood test you need for low magnesium is the red blood cell magnesium test.
If you are in the UK, the test for magnesium is not the one available on the NHS which will often show up as normal. The blood testing clinic I used was Biolab in London, UK. With your GP's agreement, it is possible to have blood samples collected and sent there for testing.
Mitochondrial Dysfunction in CFS
Dr Sarah Myhill, UK, published a paper in 2009, showing that patients with M.E. have mitochondrial dysfunction.
In 2014 the Optimum Health Clinic in London, UK funded research into mitochondrial function.
Emotional trauma is a factor that precedes the occurrence of much chronic illness. In the case of cancer, for example, studies have suggested a correlation between emotional trauma and the subsequent onset of cancer within the following six months.
I don't consider that I had suffered any particular trauma at the time of becoming very ill, although certainly there had been stressful events in preceding years.
After I got ill – and in my experience it is the same for many people – I had to deal with far greater emotional trauma than prior to illness. Chronic illness had repercussions on my finances, relationships, housing and survival.I believe that those of us living with CFS increase our quality of life and chances of recovery by working with emotional healing therapy such as EFT and self talk. We can hope to let go of negative events in the past. AND, just importantly, we can learn to cope with the ongoing emotional challenge of living with chronic illness.
Having said that, it is important, when living with ME or CFS to accept that you are living with a physical illness so that you can take appropriate steps to manage and limit the illness.
Despite emotional trauma experienced during 14 years of being bedbound, please note, I still experienced dramatic healing.
I say this because sometimes when we are living with chronic illness and pursuing alternative healing therapy, we can think we need to become sorted out emotionally before we can heal.
Look around you. There are many people suffering with painful emotional trauma who are walking around in good physical health!
A CFS cause is not known at this time. However, certain subgroups have been identified amongst those who receive a diagnosis of CFS.
Visitors to this alternative healing website are often interested in my own journey with CFS/ME. Below I discuss how well these subgroups fit with my own medical history.
In terms of identifying Chronic Fatigue Syndrome causes, the subgroups provide hints but no more.
Myself, along with many others, fit into many different sub-groups.
There is no way to know if CFS/ME causes are multiple and cumulative or if one single factor leads to the development of this chronic illness.
Early on when living with illness I had no diagnosis. As some of you
will know, it is hard to be very ill and have no label to give others to explain
that you are no longer your previously healthy self.
12 months later I had blood tests which showed the presence of an ongoing viral infection.
6 months after that, I was diagnosed with Myalgic Encephalomyelitis.
If someone receives a blood test early on after symptoms develop, the tests sometimes reveal an infection with an enterovirus
Some cases of CFS follow mononucleosis (glandular fever) or hepatitis A.
However, by the time most people are given a diagnosis of Chronic Fatigue Syndrome there is no longer any evidence of viral infection.
I know of one lady who contracted M.E. at University. A number of her fellow students got a virus. Many recovered but 8 of them went on to develop the illness ME.
(It is interesting to note that because they were clear on the cause and had each other's experience as reference, they did not have any of the emotional trauma of disbelief that many with the diagnosis of ME unfortunately have to deal with.
This lady rested well for a number of years and, despite having been in a wheelchair, made a full recovery. Her experience suggests that Chronic Fatigue Syndrome causes may be multiple - a virus combined with susceptibility due to other factors.)
I had a history of childhood allergies, with the symptoms being catarrh and stomach problems. They were not disabling.
In 1990 I had an operation to reduce swelling in my nose. It was as though I never quite fully came around after the general anaesthetic. Many years later I discovered I had Multiple Chemical Sensitivity (MCS) - see more below. It is likely that the anaesthetic played a role in my deteriorating health.
Although I got CFS at the age of 23, I already had some history of foreign travel to places that required vaccinations -- I had been to Israel, Egypt and Hong Kong.
I also remember reacting quite badly to the BCG vaccination at school after which my perspiration was embarrassingly yellow in colour. Looking back, this wasn't normal.
After many years of illness with ME /CFS I realised in 2000 that I had Multiple Chemical Sensitivity (MCS).
On reducing the chemical load in my environment my quality of life improved
significantly. I was able to
sit up more easily to be fed a meal and regained some speech.
On looking back over my life, I realise I had had MCS all along.
Age 5 my parent's built a loft conversion in their house and this became my bedroom.
Back in 1974 the rules were less strict about levels of toxins in building materials. It is probable that there was lead in the paint and other toxins in the floorboards.
From the time I slept in this room, age 5, I had dull aches in my legs with jumpiness at night - often called 'restless legs'.
I remember hearing the cuckoo clock ring each hour reminding me that I was still awake. (Mind you, it seems unbelievable now to sleep in a room with a cuckoo clock!)
In more recent years, I realised that an increase in the severity of ME
/ CFS had followed a time when a carer had washed my sheets in fabric conditioner.
doctor felt that MCS was the cause of Chronic Fatigue Syndrome symptoms in my case.
Another doctor thought that MCS was a symptom of CFS in my case.
Age 7 I had 8 dental amalgams put into my mouth over two days.
They weren't for decay but for 'sticky fissures'. (At the time I thought they were called sticky fishers!)
With heinsight there may have been a connection between this event and severe stomach problems over the following years, with ongoing and painfully bad indigestion which has only disappeared in recent years.
About age 11, I then developed bad sinusitus which was again ongoing.
I put all such symptoms in the category of 'something to live with' and got on with it. It was only when looking for Chronic Fatigue Syndrome causes and answering questions posed by alternative healing practitioners that these past events took on a new possible significance.
"Early signs of mercury toxicity include:
decreased sense of touch, hearing, vision and taste, metallic taste in the mouth, fatigue or lack of physical endurance, and increased salivation.
Symptoms of mercury toxicity may progress with moderate or chronic exposure to include:
anxiety, depression, anorexia, numbness and parestesias, headaches, hypertension, irritability and excitabiliyt, and immune suppression, possibly immune dysregulation.
Advanced disease processes from mercury toxicity include:
tremors and incoordination, anemia, psychoses, manic behaviours, possibly autoimmune disorders, renal dysfunction or failure."
Source: Doctor's Data Inc.
In 2002, I had a fecal test for mercury levels. My levels were off the chart.
At the time I was bedbound and there were few possibilities for treatment.
Partly as a result of writing this article I am now reflecting that mercury toxicity should be featured as a cause of symptoms in its own right rather than placed on the list of possible Chronic Fatigue Syndrome causes.
I am about to try a highly recommended detox product and will let you know the results.
I worked hard and played hard. I remember a time when I had a very nasty virus which put me in bed for a day. It took a lot to make me go to bed. I then decided that I just had to do what was planned and got out and acted as though I was fine.
I had a great capacity to push through symptoms, which I believe
is shared by many people living with ME or CFS. (For recovery or
management it is SO important to learn to 'give in' to the illness and
listen to your body.)
ME and CFS are often experienced in isolation but occasionally there have been outbreaks. One of the first was in 1955 at the Royal Free Hospital, Hampstead, UK where the hospital had to be shut down as so many doctors and nurses became ill with a polio type illness. Some never recovered.
The illness is common amongst the medical community, leading some people to suggest that exposure to viruses combined with pushing through symptoms to continue working leads to the illness taking hold.
In 1990, after camping in a barn, I found a tick buried into me. (It was later in 1990 that I had the operation mentioned above.) I had pulled the tick off. Apparently, when you do so, the dying tick injects something into your system.
In 1987 I had worked on summer camp in Massachusetts in a wood by a lake - this is another possible occasion where I could have been bitten by a tick.
Years after I became ill, something small and dark worked its way up to the surface of my skin. Quite possibly a tick had been successfully living in me for all those years.
Lyme disease is another possible cause of symptoms of ME/CFS.
Because of the lack of treatment available, those with Chronic Fatigue Syndrome CFS are often more prepared to experiment with alternative healing therapy than those with more treatable illnesses. Some of these therapies are proving effective.
Chronic Fatigue Syndrome causes may eventually be identified from observing which treatment is effective and tracking back to find out what is going wrong in the body to lead a particular treatment to have a beneficial effect.
It is not only alternative healing therapy which may lead to alleviation of Chronic
Fatigue Syndrome symptoms and therefore provide clues to a CFS cause.
At least two drugs given to cancer patients have reduced CFS symptoms. Click to read more about Low Dose Naltrexone and Rituximab.
drugs - often in much small doses than for depression - are found helpful by some people with CFS/ME. One trial showed a reduction in CFS pain.
My personal view is to go carefully when trying anti depressants. The side effects can outweight the benefits and they are often addictive.
What is a diagnostic marker?
If there was a clear biomarker, you could go into your doctors, have a blood test and you would be given a diagnosis of ME or CFS.
Consistent abnormalities of brainstem and cortical perfusion have been demonstrated in adult ME patients using PET scans. Unfortunately PET scans are expensive and not widely available, or such findings would provide a possible diagnostic marker. (Research by Work by Costa in London, UK)
The use of the name 'syndrome' as in Chronic Fatigue Syndrome is a result of the absence of a diagnostic marker. A syndrome is determined by a collection of symptoms.
With a clear diagnostic
marker or biomarker Chronic
Fatigue Syndrome causes could be much more easily identified.
It is probable that a CFS cause will be found first and will lead to the development of a diagnostic marker.
Move from Chronic Fatigue Syndrome causes to read about medical tests relevant to CFS, ME and Fibromyalgia.
Without a clear cause you may suffer disbelief in your own symptoms or encounter disbelief from others. Click for tips on how to deal with disbelief.
Move to the CFS
to link through to other people's CFS research articles, including those which suggest additional Chronic Fatigue Syndrome causes. Let's hope there will be more to come.
If you are aware of any other ideas about or articles on Chronic Fatigue Syndrome causes, you are welcome to share them via the Healing Forum.
Move to read more of my approach to Alternative Healing Therapy.
Move to an article which discusses how the causes of chronic pain may not be what we think.
Joining you in seeing you healed,
Katherine T Owen
Webmaster at www.HealingCFSME.com