Chronic Fatigue Syndrome (CFS)
This syndrome has a number of names including ME (myalgic encephalomyelitis) and post-viral fatigue syndrome.
The main symptoms are fatigue, muscle pain, brain fog, sleep disturbance and impaired temperature control. Other findings can be digestive disturbances, headaches, recurrent infections, dizziness, balance problems, night sweats, panic attacks and increased sensitivity to light and sound. For the diagnosis of CFS these symptoms need to have continued for 6 months.
Critically symptoms are worsened with exercise (whereas exercise often alleviates depression).
There are thought to be 250,000 patients with CFS in the UK. However the illness has been surrounded in controversy for the reasons outlined below.
Difficulties with the Diagnosis of CFS
- There is no standard diagnostic test. Typically blood tests come back normal so doctors are left confused about whether there is anything wrong. Worse still, when tests come back normal, some doctors have assumed, without supporting evidence, that CFS is “all in the mind”.
This is far more likely to happen in CFS than in other serious diseases such as multiple sclerosis, rheumatoid arthritis or ulcerative colitis where there are more obvious signs of disease.
- Few consultants have expertise in CFS so there is often nowhere for GPs to refer. Even those that do accept referrals often give inappropriate advice (see below). This has led to Dr Myhill, a specialist in this disease, declaring that CFS is the worst treated disease in modern medicine.
- CFS overlaps with the much commoner and less serious problem of “tired all the time” which is a frequent presentation in GP surgeries and is often short-lived.
What is the Cause?
For many years the cause of CFS remained a mystery. However our understanding of the nature of CFS has changed radically with the pioneering work of Dr Sarah Myhill. She has been investigating and treating patients with CFS for over 25 years and has been able to identify the underlying biochemical fault.
She has found that CFS is caused by an abnormality in the mitochondria, the energy-producing units within our cells and has published papers on this.
Mitochondria produce ATP (adenosine triphosphate) which is the essential unit of energy within our bodies. To give some idea of how critical this is for life, we produce a hardly believable 70 kg (two-thirds of our body weight) of ATP every single day. This normal breaks down to ADP (which is easily recyclable) and energy.
CFS patients don’t produce enough ATP. Worse still they have difficulty recycling its breakdown products, characteristically breaking down ADP further to the poorly recyclable AMP. This leads to a deficiency and a delay in the build-up of ATP, especially after exertion.
But what causes the mitochondria to fail in the first place? The two major causes are viral infections (this is sometimes called post-viral fatigue syndrome) and toxicity (as in sheep-dip flu and Gulf War syndrome), though there are many other triggers. Studies have found CFS patients have twice the level of pesticide residues and higher levels of metals in their bodies. In other words their bodies are more toxic than normal.
How do we test this?
Dr Myhill uses the state-of-the-art ATP Profile (not available on the NHS) to give essential information on mitochondrial function. The test gives a mitochondrial energy score which indicates the degree of mitochondrial dysfunction. This correlates well with the degree of disability.
The test also indicates whether mitochondrial function is impaired due to lack of substrates (shortage of key nutrients) and if it is impaired due to toxic chemicals attached to the mitochondrial membrane (translocator protein) producing a malfunction of the mitochondria.
Depending on the results she uses an integrated approach combining pacing activities through six steps to gradually increase energy, diet, mitochondrial and other supplements and measures to remove toxic chemicals. This has proved the most effective approach developed for the disease so far.
She also often does a test called cell-free DNA which gives a measure of damage to the cells. This also correlates well with the severity of CFS (levels are often very high: in the same range as cancer patients undergoing chemotherapy). In other words, despite the lack of obvious signs, the disability in CFS can be extremely severe.
More detailed information on this is in her book “Diagnosis and Treatment of Chronic Fatigue syndrome and on her website: https://www.drmyhill.co.uk/
Unfortunately Acumen laboratories who designed these test are no longer operating so these useful tests are now unavailable.
Is testing necessary?
Testing is expensive and Dr Myhill has found nearly all CFS patients are deficient of key mitochondrial nutrients including D ribose (the precursor of ATP), Co-enzyme Q10, magnesium, niacinamide (Vitamin B3) and carnitine. It is possible to supplement these without testing, using her protocol, and this is nearly always helpful. However testing will show individual differences in substrate deficiency and will highlight if there is toxicity.
Clues in the History
CFS needs to be distinguished from other forms of tiredness. A key difference is markedly reduced physical and mental stamina (due to lack of ATP). Typically these patients tire within seconds of doing an activity.
The second is delayed fatigue after mental and physical activity, lasting one to four days after activity. This is because after burning up their ATP, CFS patients are unable to recycle ADP in the normal way and have to synthesise new molecules of ATP from scratch which can take one to four days.
Other approaches can be useful. The book Recovery from CFS: 50 Personal stories –compiles by Alexandra Barton demonstrates that people can recover from CFS even if they have been ill for years. These 50 stories show a variety of approaches can be effective.
A study of older patients with CFS who took a supplement called Robuvit 300mg for 4 weeks showed a 25% improvement in fatigue. Another study in 2014 of 91 patients with CFS found improvements in fatigue, joint pain, memory, dizziness and weight fluctuation.
These approaches included diets such as raw food diets, chemical free diets, allergy and sugar-free diets and the anti-candida diets. There is an interesting overlap here with Dr Myhill’s methods. A number of people got better after using novel psychological approaches such as Mickel therapy, reverse therapy and the lightening method. Chinese herbs and yoga helped in other cases. Typically using several approaches together proved useful. I believe that no on approach will work for everybody with CFS as the causes can vary.
Another method is that of the Optimum Health Clinic run by Alex Howard who himself suffered from CFS for seven years and has written a book “Why ME. My Journey from ME to Health and Happiness”. This is a private treatment but integrates the most useful treatments currently available for ME. They have worked with over a thousand patients and are currently conducting clinical trials. Many of the therapists are recovered CFS patients.
The Pace Study
The Pace study has led to guidelines on the treatment of CFS. However its findings have been controversial, not least because it was partly funded by the Department of Work and Pensions who had more than a small vested interest in the outcome.
Patients with CFS were treated with a psychological technique CBT (cognitive behaviour therapy) and GET (graded exercise therapy). It showed subjective but not objective improvement with CBT and minimal improvement with GET. This is in line with a Belgian study which found both these treatments to be ineffective. The trial has, not surprisingly, been widely criticised. In addition graded exercise therapy has the potential to severely aggravate CFS for the reasons given above.
The net result of this study is unfortunate in that this ineffective and probably harmful approach to treatment has become the standard treatment in CFS It also unfairly implies that CFS is caused by psychological issues whereas in reality the real cause lies in a breakdown in basic cellular biochemistry.