What is CFS/ME and what are the symptoms?

Big topic. Causes strong reactions. Best place to start? probably not. But here we go...

This blog is about handling the daily practicalities of living with CFS/ME, so, ignoring the politics for now, but :

What's in a name?

CFS = Chronic Fatigue Syndrome
ME = Myalgic Encephalomyelitis

Some believe ME and CFS are totally different illnesses with different symptoms. Some think they're the same or similar. Others are waiting until the causes can be identified (including me).  The general consensus seems to be that there's a whole range of causes, causing a group of symptoms that sufferers can have - but they can't be reliably diagnosed & fixed yet like something relatively simple (ie a broken bone) can be.


So as a result, some people prefer to only use one or the other label.  I use both together - which will no doubt annoy the greatest number of fellow sufferers (grinning wickedly).  Moving on...

There are several different DEFINITIONS of what symptoms are required for a CFS/ME diagnosis.  The ME Association has a useful article about this covering these three  HERE :

• CDC (US Centre for Disease Control aka Fukada) Criteria
• Oxford Criteria
• Canadian Guidelines

Is it a REAL illness?

Yes. It's not imaginary. It's not hypochondria. It can't be fixed by 'mind over matter' or 'more exercise' or 'less sleep'.

Apologies for the brutality of the next sentence - currently, it cannot be tested for (tests only exclude every other illness they can test for that might be the culprit) - the cause is not known, there is no cure.

Anyone who tells you there is a cure or a magic bullet.  Well, they might be able to help a specific subset of sufferers (being charitable) but it costs a lot of time, money & energy to find out whether you're in that particular subset or not.  Because there's no reliable way of testing and identifying people for subsets, yet.  Your choice, but caveat emptor, keep your eyes open!

Does that mean there's no hope? NO! It is a FLUCTUATING illness - it can get worse or better all by itself. More research is being done. And you can at least 'soften' the edges of your ME/CFS by lifestyle management - you can often slow down relapses and stabilise your condition & speed up recovery for long periods of time if you're careful.  Not very comforting at the beginning when newly diagnosed, but good to keep in mind as you learn to live with the condition.

What if your GP or family or friends don't believe you? They are wrong. The UK Chief Medical Officer disagrees with them - your GP has to follow the NICE Guideline CG53 for CFS/ME: HERE

The NICE Guideline is the Blueprint for how you should be treated once you have been diagnosed with ME/CFS.  

What are the symptoms?

Wide ranging! Everyone is different, and it often changes over time.

The NICE Guideline at point 1.2.1 says this about symptoms:

[Start NICE Guideline Extract]

1.2.1 Presenting symptoms suspicious of CFS/ME

1.2.1.1CFS/ME is recognised on clinical grounds alone. [...]

1.2.1.2Healthcare professionals should consider the possibility of CFS/ME if a person has:

• fatigue with all of the following features:
  • new or had a specific onset (that is, it is not lifelong)
  • persistent and/or recurrent
  • unexplained by other conditions
  • has resulted in a substantial reduction in activity level
  • characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)
    
    and
• one or more of the following symptoms:
  • difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle
  • muscle and/or joint pain that is multi-site and without evidence of inflammation
  • headaches
  • painful lymph nodes without pathological enlargement
  • sore throat
  • cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing
  • physical or mental exertion makes symptoms worse
  • general malaise or 'flu-like' symptoms
  • dizziness and/or nausea
  • palpitations in the absence of identified cardiac pathology.

1.2.1.3Healthcare professionals should be aware that the symptoms of CFS/ME fluctuate in severity and may change in nature over time.

1.2.1.4Signs and symptoms that can be caused by other serious conditions ('red flags') should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated^[5]:

• localising/focal neurological signs
• signs and symptoms of inflammatory arthritis or connective tissue disease
• signs and symptoms of cardiorespiratory disease
• significant weight loss
• sleep apnoea
• clinically significant lymphadenopathy.

[Stop NICE Guideline Extract]

Does everyone get the same symptoms?

No.

Not only that, YOU probably aren't going to get the same symptoms.    The symptoms can change in type and severity over the period of illness, monthly, weekly, daily or even hourly!  This can be very confusing and distressing, so try and remember it's normal for a fluctuating illness to do this.

Sometimes symptoms can become familiar and be warning signs, other times they just arrive and wipe you out at worst, or annoy you at best.

Can I be ill with something else as well as CFS/ME? at the same time?

Yes.

There's some crossover anyway with illnesses like Fibromyalgia and Irritable Bowel Syndrome and many others.  In addition, many CFS/ME people (meeps)/ sufferers have other illnesses as well.

So, if you get new symptoms or they change enough for you to notice them - ALWAYS go back to the GP to make sure the ME/CFS isn't masking something else. Better safe than sorry!