What ME/CFS isn't

 

There are many myths and misconceptions surrounding ME/CFS. None of which are helpful for people suffering from this illness. 

 

Here are some of the more common myths. Click on each myth to learn why it's not true.

8 common myths (click to find out more)

ME/CFS isn't "real"

When people say ME/CFS is "not real" they are often trying to say it's a psychological or psychosomatic illness (as opposed to physical or biomedical). This is not true.

 

In a nutshell there are a number of biological abnormalities seen in ME/CFS patients. Studies show that fatigue has a physical origin and health organisations do not classify ME/CFS as a psychological illness. The cause does not fit the profile of a psychological illness, generally starting with an infectious trigger and sometimes occurring in outbreaks.

 

Click here for a more detailed explanation about why ME/CFS is "real".

ME/CFS isn't a serious illness

Many don't consider ME/CFS as 'serious' as other chronic illnesses.

 

Whilst some with ME/CFS lead relatively normal lives, functioning day-to-day, there are a significant number of sufferers who remain unseen who cannot leave their homes.

 

Research in New Zealand shows that ME/CFS can affect quality of life as seriously as Parkinson's Disease or Multiple Sclerosis.

 

It's an invisible illness, often causing others to underestimate the seriousness of ME/CFS.

ME/CFS is just "Yuppie flu"

In the 1980s, ME/CFS was referred to as "Yuppie Flu", reflecting a common view that it only strikes middle class, caucasian, people in developed countries. 

 

This is incorrect, as research shows that ME/CFS affects people regardless of race and social class. Some research suggests the illness is even more common amongst minority groups.

ME/CFS is just tiredness

Some think of ME/CFS as normal tiredness, saying things like "I get tired at the end of a long day too". ME/CFS is very different to tiredness experienced by healthy people.

 

Firstly, it's much more severe, with some sufferers describiing it as an 'unnatural' or 'debilitating' fatigue unlike any fatigue they've ever experienced.

 

Secondly, it can be triggered by even the smallest amount of activity. For example, the level of fatigue that a healthy person experiences after running a marathon can be triggered, in a person with ME/CFS, by something as simple as taking a shower.

 

Thirdly, the tiredness is often accompanied by a range of symptoms which heighten the feelings of exhaustion.

ME/CFS is just depression

Some have suggested that ME/CFS is depression as there are a number of overlapping symptoms between the two illnesses. This is a misconception which isn't helped by the fact that many ME/CFS sufferers suffer from depression as a result of having chronic illness (i.e. secondary depression).

 

ME/CFS differs from depression in a lot of ways. Here are five quick ways to distinguish the illnesses: 

 

  1. Cause - The most common trigger of ME/CFS is a viral infection, and most triggers seem to implicate the immune system

  2. Symptoms - ME/CFS is associated with a range of symptoms that aren't present in depression (e.g. orthostatic intolerance)

  3. Biological changes - research shows a number of biological abnormalities that aren't present in depression. (e.g. low VO2 threshold)

  4. Post-exertional malaise - depressed patients can respond well to rigorous physical activity, however this makes ME/CFS patients worse

  5. Attitudes - when patients are asked what they'd like to do when they are well, ME/CFS patients generally list a number of things. Often depressed patients do not as they lose interest in activities they previously enjoyed

ME/CFS is a "waste basket" diagnosis that should not be considered

Some physicians believe that ME/CFS shouldn't be diagnosed due to the perceived level of subjectivity involved, and consider it a "waste basket" diagnosis.

 

Whilst we don't have the luxury of an objective diagnostic lab test, there are a number of reasons an ME/CFS diagnosis should be considered:

 

  1. Peer reviewed clinical criteria can guide a robust ME/CFS diagnosis (one of the more popular criteria is the Canadian Case Definition). These criteria distinguish ME/CFS from alternative diagnosis such as depression. Click here for more

  2. Making a diagnosis is important. Early diagnosis and management has been shown to improve long-term outcomes

  3. Lack of an objective biomarker is not unique to ME/CFS, with illnesses like Parkinson's Disease also being diagnosed on the basis of exclusion

There are no treatments that can help ME/CFS

Some physicians believe there is little that can be done to treat ME/CFS patients. Whilst there is no cure, there are a lot of treatments that have been proven to help manage symptoms and improve quality of life.

 

Many believe that it is a misconception Graded Exercise and Cognitive Behaviour Therapy are the most effective management techniques for ME/CFS. In fact world leading specialists are arguably most optimistic about a chemotherapy drug in the treatment of ME/CFS. Studies (although in an early stage) are producing some remarkable results

People with ME/CFS do not recover

Some assume that, because there is no cure for ME/CFS, patients don't recover. This is not true.

 

Despite there being no cure, some patients do recover. The reasons why some recover and others do not are not clear. However, implementing a solid management programme could improve chances of recovery.

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