What are Chronic Fatigue Syndrome subgroups?
Sometimes people talk about CFS subgroups.
Subgroups can refer to the different situations or triggers that have proceeded the illness for different people.
Subgroups can also refer to different groups of symptoms shared by certain people diagnosed with CFS or ME.
The presence of subgroups raises the question: Do all of us with a diagnosis of CFS have the same illness?
We don't know the answer to that question at this time.
This article shares my personal journey. It talks about the different Chronic Fatigue Syndrome subgroups I relate to in terms of the possible triggers for the illness I experience.
For a less personal take, please click through to read about possible causes of Chronic Fatigue Syndrome.
Myself, along with many others, fit into many different Chronic Fatigue Syndrome subgroups.
Early on when living with illness I had no diagnosis. As some of you
will know, it is hard to live with severe chronic illness and have no label to give to others to explain
why 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 CFS 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 usually no longer any evidence of viral infection.
(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 Myalgic Encephalomyelitis 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 M.E. and Chronic Fatigue Syndrome causes may be multiple - perhaps 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 vaccine at school after which my perspiration was embarrassingly yellow in colour. Looking back, this wasn't normal.
I have since found out that in order to establish the vaccine in the body, chemicals are included which could cause health problems.
As with so many of these Chronic Fatigue Syndrome subgroups, the body's response to a vaccine could be causal in the development of CFS/ME, or it could be that someone who already has a tendency to develop CFS/ME is more sensitive to vaccines than someone in the general population.
After many years of illness with ME /CFS I realised in 2000 that I had Multiple Chemical Sensitivity (MCS).
When I reduced 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.
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.
Do I have mould in my house? Yes.
Is it affecting me? I don't know.
The connection between mold and CFS/ME is one that I have only come across recently, but I now see it everywhere!
My own exposure to mercury as a possible cause of CFS symptoms is as follows:
Age 7 I had 8 dental mercury amalgams put into my mouth over two days.
The fillings 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 sinusitis 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 answering questions posed by alternative healing practitioners that these past events took on a new possible significance.
In addition mercury is an ingredient in many vaccines in the form of thimerosol.
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.
As a student at University, 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 CFS/ME. (For recovery or
management it is SO important to learn to 'give in' to the illness and
listen to your body.)
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 not really one of the Chronic Fatigue Syndrome subgroups, but a separate illness. If you have Lyme Disease you have been misdiagnosed, and may want take steps to get the correct diagnosis.
However, there are many people like myself who may have Lyme disease and yet continue with a diagnosis of CFS/ME.
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.
believe that those of us living with Chronic Fatigue Syndrome increase our quality of life
and chances of recovery by working with emotional healing therapies such
as EFT and self talk.
We can hope to let go of negative events in the past.
Just as importantly, we can learn to find ways to cope with the ongoing emotional challenge of living with chronic illness.
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!
We will get asked the question "What causes CFS/ME?".
Move from Chronic Fatigue Syndrome subgroups to read about some possible ways to answer this question.