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The Name, the Blame, and the Shame

man with head in hand

Why is Chronic Fatigue Syndrome and Myalgic Encephalitis (CFS/ME) the worst treated condition in Western medicine? Because of the Name, the Blame and the Shame.

The Name – when the name masquerades as a diagnosis

The practice of medicine used to be an honorable occupation undertaken by doctors who listened to patients, catalogued their symptoms and tried to make sense of why they were suffering such. Having established the cause, there were clear implications for treatment. This is called diagnosis – with the cause established, the treatment followed naturally and logically.

In the treatment of chronic conditions, doctors no longer diagnose. They may be good at recognizing and giving names to clinical pictures, but this now masquerades as a diagnosis. Patients feel comforted and reassured that their illness has been recognized because it has been named. What I shall call “CFS/ME” has been called “the disease of a thousand names.” Its clinical picture is variously recognized under the names of yuppie flu, myalgic encephalitis, post-viral syndrome, Royal Free syndrome, systemic exertion intolerance disease (SEID), chronic fatigue immune dysfunction syndrome (CFIDS) and many others.

Quite naturally and understandably, patients assume, once their illness has been named, that appropriate treatment, addressing the causes, will follow. But this is where it all starts to go horribly wrong.

Conventional medicine offers a package of treatment that bears no resemblance to causation. In fact, the treatments make things much worse, be they antidepressants or graded exercise therapy. Many patients are told that they are depressed, but so often the CFS intolerance of medication means that the drugs prescribed make them much worse. Meanwhile, it is an intellectual disgrace that graded exercise therapy is offered in a condition which, by definition, is exacerbated by exercise.

We have arrived at this intellectually risible situation because Western medicine is now run for profit and driven by Big Pharma. Big Pharma established its reputation early with the discovery of antibiotics. These miracle drugs have saved millions of lives, have been and continue to be a massive medical asset. The problem with antibiotics is that, whilst they save lives, they do not make big money for Big Pharma because people are cured.

Pharmaceutical companies quickly worked out that the way to register big profits is to get patients and doctors dependent on symptom-suppressing drugs which they have to take for life. Having been dazzled by the antibiotic miracle, doctors are now wooed by Big Pharma so that they no longer act as free-thinking, intelligent, responsive and responsible individuals. They have been sucked into a mechanistic tick-box set of algorithms which masquerade under the names of diagnosis and treatment.

Nowhere is this worse than in the treatment of CFS/ME where fatigue is called “depression” – this really makes CFS/ME sufferers angry. “No,” they cry, “not depressed, but seriously frustrated because I do not have the energy to get on with life.” In the eyes of the doctor, the tears of frustration further confirm the diagnosis of depression. The essential doctor–patient trust is then lost.

The Blame – when compensation should be due

There are many triggers for CFS/ME and a common cause is acute infection. Almost invariably there will have been a package of stress (and life is full of such), which has led up to the trigger. However, we now recognize increasingly that many people are switched into CFS/ME by other factors about which the patient has no knowledge, no say and no control. In my 35 years of seeing, I estimate, over 6,000 patients with CFS/ME, I have seen many other triggers, including:

  • Sheep dip ’flu (poisoning by organophosphate pesticides)
  • Aero-toxic syndrome (poisoning by engine fumes, including organophosphates)
  • Dental amalgam fillings (mercury leaks out of fillings from the moment they are inserted)
  • 9/11 syndrome (poisoning by burnt plastics and fire-retardant chemicals)
  • Gulf War syndrome (multiple triggers including vaccination, organo-phosphates, chemical warfare and depleted uranium)
  • Sick building syndrome (poisoning by volatile organic compounds used in carpets, paints, glues and solvents)
  • Vaccination (this is pro-inflammatory with the potential to switch on the immune system – vaccinations are immuno-toxic)
  • Silicone poisoning from breast and other implants (silicone migrates out of implants from the day they are inserted; it migrates through the body and switches on inflammation – it is immuno-toxic)
  • Carbon monoxide poisoning
  • Prescription drugs (the Pill, HRT and fertility drugs are a major risk factor and trigger for CFS. Statins are a particular hate of mine) Outdoor air pollution (from pesticide drift, polluting industry) Poisoning by formaldehyde (farmers in chicken-rearing sheds)
  • ‘Recreational’ drugs (alcohol, cannabis, amphetamines, etc.)

What is common to many of the above conditions is that there have been huge patient-driven campaigns to recognize these syndromes so that appropriate litigation and compensation can follow. I have often been involved. The outcome is predictable – the Establishment ignores, denies and buries the problem to ensure a cheap conclusion. Where compensation has resulted in individual cases, a gagging clause has been applied so that no others can follow that route.

To achieve the above, successive governments have colluded with doctors to bury the proper diagnosis of CFS/ME and continue to run with clinical pictures that pander to the different Establishment pressure groups. Millions of pounds of government and industry money have been spent to establish CFS/ME as a psychiatric disorder, culminating in what is known as the PACE trial, which was published in The Lancet in 2011 and cost in the region of £5million. Those wishing to investigate the true nature of CFS/ME can only dream of receiving such sums of money; in fact, these researchers have been left out in the cold.

The Roadmap to Recovery

Energy

sprinter getting ready to raceEnergy is a vital part of life but is medically neglected. The commonest complaint in general medical practice is fatigue – it even has its own acronym, TATT (tired all the time) – but it is the worst treated symptom in modern Western medicine.

We would all like to have more energy. Energy is like money – it is great fun spending it, but very hard work earning it. Think of energy as money in the bank, but our energy bank is one which we cannot go overdrawn on – we cannot borrow energy. If our bank runs out of energy, then we die. Energy is the difference between life and death. This is why fatigue is such an important symptom – it protects us from death. Henry Worsley, who tried to walk across Antarctica unsupported, died in January 2016 of ‘complete organ failure’. He had poured all his energy into physical exertion and had nothing left to run his body on. He simply ran out of energy. Similarly, Napoleon was only interested in soldiers who ran themselves into the ground: The first virtue in a soldier is endurance of fatigue; courage is only the second virtue. – Napoleon Bonaparte

My primary interest is with increasing the energy we need to live life to its fullest. Whilst my main focus is on people with debilitating fatigue, the same principles apply also to athletes for peak performance and to healthy people who simply wish to live to their full potential. We all live on the same energy spectrum – athletes are at the top and some of my patients with CFS/ME are near the lower end.

The key to recovery is to understand how your body delivers and uses energy.

  • The goal is to maximize the delivery of energy and minimize the expenditure of energy, especially the wasteful expenditure of energy.
  • We can maximize the delivery of energy by looking at factors such as:
    • mitochondria
    • diet and gut function
    • thyroid gland
    • adrenal gland
    • sleep
    • methylation cycle
    • antioxidants
    • detoxification
  • We can minimize wasteful energy expenditure by looking at such factors as:
    • the ‘emotional hole’ – stress and worry
    • the ‘immunological hole’ – infection, allergy, autoimmunity, inflammation
    • Chronic fatigue syndrome (CFS) occurs where there are poor energy delivery mechanisms.
    • Myalgic encephalitis (ME) is CFS + inflammation – that is, CFS concurrent with infection, allergy or autoimmunity.

I spend more time talking about diet than all other subjects put together. This is in direct proportion to its importance. It may be the most difficult thing I ask people to do, but also the most vital. People want me to be prescriptive about diet and tell them exactly what they can and cannot do, but there is no such universal prescription – we are all so very different with respect to allergies, likes, dislikes, gut function, deficiencies, ethnic background and so on. Choosing the right diet for oneself is like playing cricket – I can give you the rules (whoops, ‘laws’) of the game, but everyone has to develop their own style within those laws.

Metabolic syndrome (that is, loss of control of blood sugar levels and all its attendant problems) is a major risk factor for CFS/ME and part of the reason why we are seeing epidemics of that condition. I read recently that 3 per cent of school children were off school because of CFS/ME.

In the early days of treating CFS/ME, I used to pussy-foot around with diet, negotiating what each patient was and was not allowed to eat. I used to do deals with patients – ‘OK, cut out the dairy products but you can have butter’; ‘OK, cut out the wheat but you can have rice’; ‘OK, cut out the sugar but you can have honey.’ However, I now know that those deals just postponed recovery. As I cruelly say to my patients now, my job is to get you better, not to entertain you. For that to happen we have to have as much in place as we know we can do. All the elements of the car have to be working to get it to go. Once you are recovered, then you can, as I call it, do a deal with the Devil and allow yourself to relax the regime, so long as you stay well. Interestingly, most of my patients having recovered stick to the rules that allowed that recovery.

One of my philosophies is that I never ask my patients to do anything that I cannot do. I had to write a book to fully convince myself of the importance of not just the Paleo but also the ketogenic diet. I am not going to repeat all the arguments iterated in that book here – you will have to buy Prevent and Cure Diabetes; both it and Sustainable Medicine cover this in detail. Indeed, most of my ill CFS/ME patients would not have the energy to read and digest either book, so what follows are the simple Rules of the Game followed by a suggested daily menu.

Suggested daily menu

Breakfast

  • Bacon, eggs, fried tomato
  • Smoked fish (kippers, mackerel with lemon juice)
  • Nuts and seeds with soya yoghurt or coconut yoghurt

yogurt in jar

Lunch

  • Cold meat, fish (tinned fish in olive oil is fine), prawns, salami, smoked fish, rusk-free sausage (i.e. 100 per cent meat), avocado
  • Salad (lettuce, cucumber, tomato, celery, peppers, etc.), French dressing
  • Green vegetables with nut/seed oils
  • Home-made soup (made from meat stock, not cubes, only with allowed vegetables)
  • Nuts and seeds with soya yoghurt or coconut yoghurt
  • Linseed bread

Supper

  • Meat, fish or eggs, green vegetables
  • Berries, soya yoghurt, coconut yoghurt, coconut cream
  • Nuts, seeds

 

Initially, be careful with root vegetables such as potato and parsnip, which are relatively high in carbohydrate. Whether to include them in the diet later depends largely on whether there is a fermenting gut problem. Most people can introduce some; others not at all.

Always remember: breakfast like an emperor, lunch like a king and sup like a pauper!

Don’t dig your grave with your knife and fork. – Old English Proverb

 


The above excerpt is from Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis by Dr. Sarah Myhill. It has been adapted for the web.

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