Before we jump into what is Chronic Fatigue Syndrome (CFS)?
It’s important to know that this condition has a variety of different names…and there is now a new one to add to the list! Recently, there is a push to rename it SEID (Systemic Exertion Intolerance Disorder) by the Institute of Medicine (IOM). However, for ease, we will use ‘CFS’ in this information, as it is a term most of us are most familiar with.
Equally important is to know that this condition is not a mental illness! CFS has been accepted as a physical illness by many different countries health systems. (If you are finding that your medical practitioner says otherwise…time to get another doctor!).
The Different and Changing Names Game
- Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
- Chronic Fatigue Syndrome or “CFS”
- Post-Viral Fatigue Syndrome or “PVFS”
- Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”
- SEID (Systemic Exertion Intolerance Disorder)
Typical Features of CFS
Commonly, a previously fit and active person finds their illness triggered by an infection – where people never fully recover from their illness. Less common triggers include toxins, vaccinations, major trauma, organophosphate pesticides or stress/trauma – such as an accident, pregnancy and surgical operations.
In some cases there is no specific or obvious event and the person reports a gradual decline in their health over a period of months or even years.
The most predominant symptom of CFS is usually severe fatigue and malaise following mental or physical activity. The full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity (this is assuming that the person was not already in a flare-up or in a ‘recovery period’ from a previous activity).
It’s important to note that this doesn’t mean people are exhausted from doing a 5 mile hike! For some, simple things like even taking a shower, or doing a load of laundry can be absolutely exhausting.
The other main symptoms are:
- Muscle pain issues that arise from exercise intolerance and post-exertional malaise (i.e. feeling exhausted the day after not a huge amount physical activity), pain (myalgia) is present in around 75% of CFS patients) and visible twitching of the muscles ,which sometimes includes eyelid twitching.
- Other symptoms which tend to occur in CFS include sleep disturbances (and never feeling rested), alcohol intolerance and IBS (Irritable Bowel Syndrome)
- Some people may develop mood swings and features of clinical depression
- Issues in immune system function include joint pains, sore throats, enlarged glands, headaches, issues with body temperature control and flu-like feelings.
- ‘Brain Fog’ – forgetting words, losing concentration easily, making silly mistakes
- There are many other symptoms that come along with CFS
Suspect You Have CFS?
If you suspect that you have CFS, a great way to provide your doctor relevant information about your experiences, both mentally, physically and sleep, is using our FibroMapp App.
The detailed, yet easy to read reports provides not only your doctor, but you, with a better understanding of what is going on with your body.
As there is no one treatment (and no ‘one size fits all’ with CFS – everyone is different), it is imperative for your doctor to establish all the issues that are going on with you, investigate with tests to rule out other conditions and then treat each symptom separately in many cases.
There are many people who find that they are doing better once removing gluten, wheat, sugar and sometimes dairy from their diets.
Unfortunately and similarly to fibromyalgia, there sadly is no real conclusion as to what is causing CFS/ME/SEID. Much more research needs to be done to get to the root issue as to the cause of this debilitating condition. Finally, more funds are being made available to do just this. For more resource information, click here.