CFS/ME

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 yet a clear 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.

Youtube videos:


Perrin's lecture (1 of 6)



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.


More about the condition 

The illness was first diagnosed in the  19th century as neurasthenia, but has been given many other  names since including CFS, myalgic encephalomyelitis (ME), system exertion intolerance disease and Epstein-Barr virus. Suggestions about the cause have ranged from infections, gut bacteria, stress, depression, immune problems, trauma, environmental toxins or allergies.


History 


Reports of illness that fit the description of chronic fatigue syndrome go back as far as 1750, when Sir Richard Manningham reported a syndrome called febricula, meaning “little fever.” Papers published by medical journals such as The Lancet and the British Medical Journal also refer to the likelihood that historical figures such as Florence Nightingale and Charles Darwin suffered from a condition that resembles the syndrome (News-Medical 2017).


The term “chronic fatigue syndrome” was first used in medical literature to describe an illness that “seemed like chronic active Epstein-Barr virus (EBV) infection but did not seem to be caused by EBV.” In 1988, the term was defined in a publication: “Chronic fatigue syndrome: a working case definition,” and replaced the term “chronic Epstein-Barr virus syndrome” (Holmes, et al 1988).


Dr Andrew Wakefield's 1998 study claims of links between vaccination and autism in the UK (Wakefield A et al,1998). He was discredited and struck off the medical register, the study was retracted by the Lancet and the idea that autism is connected to the measles, mumps, rubella (MMR) vaccine has been thoroughly discredited by a number large-scale clinical trials (Nature, 2011)


Judy Mikovits, PhD, a biochemist and molecular biologist in US with more than 33 years of experience. In 2009 she found that at least 30% of our vaccines are contaminated with gammaretroviruses. "Not only is this contamination associated with autism and chronic fatigue syndrome, it is also associated with Parkinson’s, Lou Gehrig’s disease, and Alzheimer’s” (Lombardi et al, Science, 2009). The article was retracted in 2011 by Science.


2010 Dr Sarah Myhill, who specialises in treating people with CFS/ME, had been suspended from the medical register by the General Medical Council, although in 2011 her name was restored with conditions. Dr Myhill states that "chronic fatigue syndrome is the symptom caused by mitochondrial failure". According to her, "CFS/ME is the clinical picture that arrises when energy demand chronically outstrips energy delivery. Diagnosis is all about identifying the reasons for this because that gives clear indication for management. Fatigue is the symptom that patients experience when energy demand exceeds energy delivery. Correction of mitochondrial function addresses the issue of energy delivery. Attention to energy expenditure is also part of management, hence the importance of pacing of activity." Dr Myhill is an author of many publications 2009, 2012 where she concludes that Mitochondrial function tests identify the causes of the biochemical lesions which, for the most part, are immediately due to substrate deficiencies and blocking by endogenous or exogenous toxins (Myhill et al, 2009, 2012, 2012).


With that in mind, Dr Andrew Wright who had a private practice in Bolton, Lancashire, specialising in the management of fatigue disorders said: ”anything that helps the lymph work properly is of benefit to many patients, simply by helping the lymphatic system flow properly you clear toxins and inflammatory chemical that the immune system produces if there is an infection". He thinks that CFS is a chronic infection, a bacterial illness where toxins are deriving from bacteria centred in the lymphatic system. In 2011 The General Medical Council decided that his fitness to practise was impaired, adopted an “unwavering mindset” that ignored mainstream medicine.


In 2011, the Pace trial – a five-year study of CFS funded by the UK government, recommended cognitive behavioural therapy and graded exercise regimes as treatments for the disease. However, the ME association, the National Institutes of Health and the patient community argued that CBT and GET should not be used as a primary treatment strategy in ME/CFS.


2013 Professor Jonathan Edwards, a rheumatologist, urged for more acknowledged scientific methods to confirm whether the disease is caused by inflammation or it is psychogenic, "objective measures of patients symptoms to show by how much and by what degree any improvement is been achieved". 2015-16 he publicly criticised the Pace trial in a letter signed by 36 additional colleagues in the ME/CFS field. 



 Worldwide CFS/ME

The prevalence rate of CFS/ME worldwide is estimated around 1.2 per cent (News-Medical 2017). 


 US

According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed.
 

Behind chronic fatigue syndrome’s benign name is an illness that can ruin the lives of once healthy people, leaving them in a near-permanent state of exhaustion and sometimes unable to work, think clearly or care for themselves (smartnews).


In recent years, however, activism by patients and their families has fueled greater recognition of CFS as a real illness that should be studied and cured. Much of that activism has focused on replacing “chronic fatigue syndrome” with the older, less stigmatized (though questionably accurate) name “myalgic encephalomyelitis,” which means “brain and spinal cord inflammation with muscle pain.” The illness name is often shortened to ME/CFS. Activists have also pushed to get funding from the National Institutes of Health to research the illness (smithsonian). 



 UK


About 250,000 people in the UK have CFS (Department of Health).

Up to date, according to the National Health Service, the main symptom of CFS/ME is feeling extremely tired and generally unwell. The National Institute for Health and Care Excellence (NICE) says you should be offered a treatment plan tailored to your symptoms.

NHS overview, symptoms, diagnosis and treatment.


Dr Raymond Perrin, an osteopath and neuroscientist, has developed a system of manual diagnosis and treatment that is based on the hypothesis that CFS/ME is a disorder of the lymphatic drainage of the CNS. The Perrin’s Technique video.


* More about the Lymphatic system: facts, functions and diseases.


* BMJ open: Can physical assessment techniques aid diagnosis in people with chronic fatigue syndrome/myalgic encephalomyelitis? A diagnostic accuracy study


* JAOA journal: Lymphatic Drainage of the Neuraxis in Chronic Fatigue Syndrome: A Hypothetical Model for the Cranial Rhythmic Impulse

 


 Russia 


According to Vitaly Dontsov, a professor at the Moscow state medical university and Russia’s leading expert on chronic fatigue syndrome (CFS) the disease can be caused by an infection:

"There are plenty of such agents. According to a virus theory the herpes virus can cause the fatigue syndrome disease. Immune system disorder and psychological background are also important factors. The chronic fatigue is typical in such cases. It is difficult to make a move or say a word, which goes far beyond usual fatigue. It is a pathological fatigue.”


While it is quite difficult to define the cause of the syndrome to cure the disease is almost impossible.  It is a kind of “mini-AIDS” of the 21st century, Dontsov states:


"Foreign experts applied immunotherapy but it led to drastic complications. In Russia we practice a systematic approach used for curing diseases, which do not respond to treatment.  It implies a three month sanatorium course with compulsory body massages, long walks, intensive psychotherapy, gradual increase of physical exercise and softly stimulating immune remedies. After this course the condition of 40% of patients has improved." (Sputnik News 2017). 



 Australia 


It is estimated that as many as 200 000 Australians have ME/CFS (News-Medical 2017).


Biological basis

It is not yet clear whether the increase in inflammation markers could be a cause or result of the condition.

However, Montoya says the results support mounting evidence that CFS is a physiological condition, not a psychosomatic disorder. “There’s no question this is something that’s biologically based,” he says. “This is a disease that does not get cured with psychological treatments, counselling or anti-depression drugs (newscientist.com). 



 Norway 


A team in Norway has had some early success in treating CFS by targeting the immune system and reducing inflammation. They have been using a drug called “rituximab" to wipe out the white blood cells that may make inflammatory antibodies (newscientist.com).




References


Holmes, et al (1988) “Chronic fatigue syndrome: a working case definition” Available online at: <https://www.ncbi.nlm.nih.gov/pubmed/2829679> Accessed on 24 November 2017

Lombardi V, Ruscetti F, Mikovits J et al (2009). Science “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” Available online at: <http://science.sciencemag.org/content/326/5952/585.full> Accessed on 24 November 2017

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

Montoya et al (2017). “Cytokine signature associated with disease severity in chronic fatigue syndrome patients” Available online at: <http://www.pnas.org/content/114/34/E7150.full> Accessed on 11 December 2017

Myhill et al (2009). “Chronic fatigue syndrome and mitochondrial dysfunction” Available online at: <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/> Accessed on 24 November 2017

Myhill et al (2012). “Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” Available online at: <https://www.ncbi.nlm.nih.gov/pubmed/22837795> Accessed on 24 November 2017

Myhill et al (2012). “Targeting mitochondrial dysfunction in the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - a clinical audit” Available online at: <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3515971/> Accessed on 24 November 2017

Nature 2011, “Fresh dispute about MMR ‘fraud’. Pathology records are at the centre of a new disagreement over disgraced medic Andrew Wakefield” Available online at: <http://www.nature.com/news/2011/111109/full/479157a.html> Accessed on 24 November 2017

News-Medical 2017, Available online at: <https://www.google.co.uk/amp/s/www.news-medical.net/amp/health/Chronic-Fatigue-Syndrome-History.aspx> Accessed on 24 November 2017

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

Sputnik News 2017. “The voice of Russia” Available online at: <https://sputniknews.com/voiceofrussia/2011/11/14/60368373/> Accessed on 11 December 2017

Wakefield A, Murch SH, Anthony A et al 1998 “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children” Available online at: <http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)11096-0/fulltext> Accessed on 24 November 2017

Comments