CFS/ME

Introduction

Chronic fatigue syndrome (CFS) / Myalgic Encephalomyelitis (ME) is a condition where you have long-term disabling tiredness (fatigue). Most people with CFS/ME also have one or more other symptoms such as muscular pains, joint pains, disturbed sleep patterns, poor concentration, headaches. The cause is not known. Treatments that may help in some cases (but not all) include a programme of graded exercise therapy (GET) and cognitive behavioural therapy (CBT).

It is estimated that around 250,000 people in the UK have CFS.
Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15. 

The term CFS is often used by doctors. This is because the main symptom is often fatigue and the condition is chronic (persistent). There is also disagreement on the presence of inflammation in the brain or spinal cord which is implied by the term encephalomyelitis.
The term ME is the preferred term by many people with the condition. Some people with this condition feel that the word fatigue is an everyday word which does not reflect the different and severe type of fatigue that they have. Also, although fatigue to some extent occurs in most cases, it may not be the main or only symptom.
Some people believe that there are two separate conditions - CFS and ME. Other people believe that the two conditions are the same - but symptoms can vary.

Sometimes, however, researchers and medical staff use the term CFS to mean ME. So the situation is confusing and until these issues are resolved, many people now use the umbrella term of CFS/ME.

Symptoms 

Fatigue (exhaustion). The main symptom of CFS is persistent physical and mental fatigue. This doesn't go away with sleep or rest and limits usual activities. Most people with CFS describe this fatigue as overwhelming and a different type of tiredness from what they've experienced before.

muscular pain, joint pain and severe headaches
poor short-term memory and concentration, and difficulty organising thoughts and finding the right words ("brain fog")
painful lymph nodes (small glands of the immune system)
stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipation, diarrhoea and nausea
sore throat 
sleeping problems, such as insomnia and feeling that sleep isn't refreshing
sensitivity or intolerance to light, loud noise, alcohol and certain foods
psychological difficulties, such as depression, irritability and panic attacks
less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature

Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe symptoms. These are defined as follows: 
Mild: you are able to care for yourself, but may need days off work to rest. 
Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and need to sleep in the afternoon.
Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but you have significantly reduced mobility. You may also have difficulty concentrating.

Exercising can make symptoms worse. This is called post-exertional malaise, or "payback". The effect of this is sometimes delayed – for example, if you were to play a game of sport, the resulting fatigue may not develop until a few hours afterwards, or even the next day.
People with severe CFS are unable to do any activities themselves or can only carry out simple daily tasks, such as brushing their teeth. They're sometimes confined to their bed and are often unable to leave their house. 

Causes 

It is not known exactly what causes CFS. Various theories have been suggested, including:
a viral infection
problems with the immune system
an imbalance of hormones
psychiatric problems, such as stress and emotional trauma

Some people are thought to be more susceptible to the condition due to their genes, as the condition is more common in some families. It's possible CFS is caused by a combination of factors. Further research is necessary to confirm what causes the condition.

Diagnosis

There's no test for chronic fatigue syndrome, and it can take a long time for CFS to be diagnosed, as other conditions that cause similar symptoms need to be ruled out first. You may have blood tests, urine tests and scans to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems. It's likely some people diagnosed with chronic fatigue syndrome actually have postural tachycardia syndrome (PoTS). PoTS is an abnormal increase in heart rate after sitting or standing up, which typically causes dizziness, fainting, sweating and other symptoms.
The National Institute for Health and Care Excellence (NICE) says that a diagnosis of CFS should be considered if you meet specific criteria regarding your fatigue (for example, it can't be explained by other conditions) and if you have other symptoms too, such as sleeping problems or problems thinking and concentrating.
The diagnosis can then be confirmed if these symptoms are experienced for several months.

The concept of CFS/ME being primarily a physical disorder is foreign to most of the medical profession. However, many of them recognise that CFS/ME has physical symptoms.

For those who are interested in more detail, here is a link to a recently completed NHS research project based on a chance discovery in 1989 by osteopath and neuroscientist Dr Raymond Perrin who revealed a possible association between certain biophysical dysfunctions and the incidence of CFS/ME.

Treatment

There is yet no cure for CFS, so treatment aims to reduce the symptoms. Everyone with CFS responds to treatment differently, so your treatment plan will be tailored to you.
Some of the main treatments include:
cognitive behavioural therapy (CBT)
a structured exercise programme called graded exercise therapy
medication to control pain, nausea and sleeping problems
Treatments such as these can help improve CFS in most cases, although some people do not make a full recovery. It is also likely there will be periods when symptoms get better or worse.

Does osteopathy work?

There's good evidence that osteopathy is effective in treating persistent lower back pain. The National Institute for Health and Care Excellence (NICE) recommends it as a treatment for this condition.
There's currently good evidence that osteopathy is effective treatment for health conditions related to the musculoskeletal system:
lower back pain
neck pain
shoulder pain
arthritis
problems with the pelvis, hips and legs
sports injuries
problems with posture caused by driving, work or pregnancy

How can an Osteopath help?

Case study

I saw a 60 year old female patient who presented with severe neck and head pain. Her symptoms were bilateral and she was also complaining of chronic lower back pain. 

To my understanding, the cause of her pain was mechanical, musculoskeletal in nature. 

She said that she had ME. 

I focused on the individual symptoms that affected her, taking her condition into consideration. She was a shallow breather and I detected a lot of muscular tension across her shoulders and upper back. She was an office worker and had a demanding and stressful job. She was worrying that her condition might prevent her from continuing to work. 

The osteopathic treatments I gave her consisted of soft tissue and muscle energy techniques. I concentrated on her thoracic spine, rib cage and diaphragm. A wide range of non-invasive manual techniques, such as deep tissue massage, joint articulation, trigger point therapy, myofascial release and where appropriate medical acupuncture, were all used. She showed a remarkable recovery after the first two weeks, we continued with the weekly treatments for 6 weeks in total. I recommended returning should her symptoms come back. 

She said that the most important thing she has realised as a ME sufferer is that she needs to totally rest and allow her body to recover during the flare up episodes. Especially important is not to “over-do” things on the first day she feels better as this can trigger a relapse.


References


ME Association (2016). “Expert US and British opinion on the ‘Name Change’ Report recommendations”12 Feb 2015 Accessed on  16 November 2017.

NHS (2015) “Chronic fatigue syndrome” Accessed on  16 November 2017.
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