Vicious circles in CFS/ME

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(By Craig Robinson, as edited by Dr Sarah Myhill.)

With thanks to Sarah for ALL the ideas, as imparted to me over many years and via the writing of 6 books!

Preamble by Sarah

One falls into CFS/ME as a result of a perfect storm whose foundation stones are poor diet and inadequate sleep, compounded by overwhelming demands which may be physical, mental, emotional and/or financial. Initially the body copes surprisingly well as it gears up with thyroid and adrenal hormones to kick our mitochondrial engines into generating more energy to cope with these demands. However this progression means, to use a nautical analogy, you are sailing close to the wind. Mixing metaphors slightly, as is the tradition, it then only needs a final straw, a last demand or an unexpected infection, and suddenly your ship is in irons – sails flapping uselessly and the boat wallowing dangerously and with no steerageway.

[Historical Note - A sailing vessel is “in irons” when she is trapped in the “No Go Zone”, unable to bear away and begin sailing. The term dates from when criminals aboard old sailing ships were secured to the deck with leg-irons, unable to move.]

Recovering your position is not simply a case of reversing the most recent wrong. You have to get it all right to restore normal sailing. So it is with recovering from CFS/ME and this is illustrated by modelling the situation with catastrophe theory – see Catastrophe theory: why we get into and how we get out of CFS

So, to be blunt to the point of rudeness, you have to “get your shit together” and hold it there even as you worsen. And worsen initially you will. See Diet, Detox and Die-off Reactions - expect to get worse.

What makes this journey worse are vicious cycles. Learn to identify them and use this knowledge to make you even more determined. So what are those common vicious cycles? Over to Craig who has walked and is walking the path…….

Vicious circles.png

Introduction

[See also this Blog - CFS/ME – Vicious circles and multitasking]

There are many vicious circles in CFS/ME and these represent a further block to recovery, or worse still, contribute to a decline in functionality and an increase in symptom load.

That is the bad news.

The good news is that we have at our disposal the tools needed to break these vicious circles and often we can reverse them into virtuous circles. These tools are readily accessible to all, but some do require a determination and strength of will that is difficult to muster when one is feeling so very ill.

All I can say is that I have faced many of these vicious circles and I have found that breaking them, however hard, is its own reward through improved functionality and reduced symptom load.

Further good news is that many solutions ‘multi-task’ in that they break more than one of these vicious circles.

What follows is a list of some of these vicious circles and how one can break out of them. Much of the text, and all the thinking, is taken from Sarah’s book ‘Diagnosis and Treatment of CFS and ME – it’s mitochondria not hypochondria!’. This paper has been an exercise in collation.

The Metabolic Syndrome Vicious Circle

Metabolic syndrome is a problem because CFS/ME sufferers do not have the energy to cook. They feed themselves on convenience foods which need minimal preparation, such as bread, cereals, biscuits, crisps, fruit, sweets, chocolate and dairy products. Worse still, these foods provide a very short-term, addictive buzz of energy. This sets up a vicious cycle here because these are the very foods which result in metabolic syndrome, fermenting gut, allergy and micronutrient deficiencies all of which deplete energy.

So, we have:

Eat the wrong foods because of lack of energy --> Addictive buzz but this makes metabolic syndrome worse --> Continue to eat the wrong foods because of lack of energy --> …..

Worse still, the symptoms these foods create mean that those with CFS/ME may turn to other addictions to relieve those symptoms – to caffeine, nicotine and possibly others.

SOLUTION –

The Patent foramen ovale Vicious Circle

Dr Paul Cheney has demonstrated that over 90 per cent of CFS/ME patients have a patent foramen ovale (Fisher GC, Cheney P. Chronic Fatigue Syndrome: a comprehensive guide to symptoms, treatments and solving the practical problems of CFS. Warner Books, 1997). This is a hole in the heart between the left and right atria (which normally closes as a flap at birth); this means that blood bypasses the lungs and does not pick up oxygen as it should. Strictly speaking it is not a hole but a valve which should snap shut and stick shut at the moment of birth. This converts the single circulation of the foetus to the double circulation of the adult and allows blood to pass round the lungs to collect oxygen. For some people, the valve does not stick – it remains as a flap. This does not matter so long as the higher pressure in the left atrium compared to the right atrium holds the flap shut. But if the heart is weak, as it is in CFS/ME patients because of poor mitochondrial function, then the pressure difference is lost and the valve may blow open. If this happens, some blood does not circulate round the lungs; it short cuts back into the left side of the heart. This means oxygen levels in the blood coming from the left side of the heart drop and energy delivery is further impaired because of poor oxygen supply to the tissues. This can happen suddenly and I suspect this explains why some CFS patients can very quickly deteriorate in a way not commensurate with increased activity.

So, we have:

Poor mitochondrial function --> heart is weak (the heart is a muscle packed full of mitochondria to ensure good function) --> pressure difference between left and right artria is lost --> valve may blow open --> blood does not circulate round the lungs but short cuts back to the left side of the heart --> oxygen levels drop --> energy delivery is impaired --> poor mitochondrial function -->…..

SOLUTION –

  • Feed mitochondria their preferred fuel which are ketones ie the PK diet - see The Paleo Ketogenic Diet - this is a diet which we all should follow and Our book 'The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds'
  • Give mitochondria the raw materials to function with the mitochondrial bolt on package
    • Coenzyme Q10 as ubiquinol – 200 milligrams
    • Vitamin B3 as niacinamide – 500-1500 milligrams – slow release
    • Acetyl-L-carnitine – 1-2 grams
    • D-ribose – up to 15 grams (but this must be part of the carb count of the PK diet)
    • Vitamin B12 – 5 milligrams sublingually or ideally B12 by injection
    • Magnesium – ½ ml 50% magnesium sulphate by injection, ideally, together with 300mg orally and vitamin D 10,000iu daily to enhance absoprtion
  • Identify blockages – the common ones are products of the fermenting gut, pesticides and VOCs (can be got rid of with heating regimes - see Detoxing - Far Infrared Sauna (FIRS))
  • Look at the control mechanisms – thyroid accelerator pedal and the adrenal gearbox see Conducting the CFS orchestra

This is a sub-example of the vicious circle below.

The Mitochondrial Function Vicious Circle

The heart delivers fuel and oxygen to all cells in the body and if fuel and oxygen delivery is impaired then this too further impairs energy delivery mechanisms as seen below:

Mito.png

SOLUTION –

  • Improve the mitochondria as above - mitochondrial bolt on package

The Oxygen Delivery - Hyperventilation Vicious Circle

If energy delivery at the cellular level is impaired, the brain may misinterpret this as poor oxygen delivery and stimulate the respiratory centre to breathe harder. This may result in hyperventilation, which actually makes the situation worse. Hyperventilation changes the acidity of the blood (it becomes more alkali) so that oxygen sticks more avidly to haemoglobin so worsening oxygen delivery. Remember, shortness of breath may also result from heart failure, respiratory distress and anaemia, and these symptoms need investigating as a separate issue.

So, we have:

Poor energy delivery as a result of poor mitochondrial function --> brain misinterprets this as poor oxygen delivery --> respiratory centre breathes harder, resulting in hyperventilation --> blood becomes more alkali --> oxygen sticks more avidly to haemoglobin --> oxygen delivery worsened --> respiratory centre breathes harder, resulting in hyperventilation --> ....

SOLUTION –

The Magnesium Deficiency Vicious Circle

The release of energy from ATP is magnesium dependent, as is the synthesis of ATP from ADP. Magnesium is of central importance in mitochondria. Magnesium deficiency is common in CFS/ME sufferers and may result from hyperventilation – so we may have a vicious circle within a vicious circle! [See Quote below].

Having low levels. of magnesium inside cells and mitochondria is a symptom of CFS/ME but also a cause of it. This is because 40 per cent of resting energy simply powers the ion pumps for sodium/potassium (Na/K) and calcium/magnesium (Ca/Mg) across cell membranes (an essential ongoing process for life). When energy supply is diminished, there is insufficient energy to fire these pumps, so magnesium cannot be drawn into cells for oxidative phosphorylation to work. If there is insufficient energy to drag magnesium into cells, then there is a further diminishing of energy delivery.

So, we have:

Poor energy delivery as a result of poor mitochondrial function --> insufficient energy to drive the ion pumps for sodium/ potassium (Na/K) and calcium/magnesium (Ca/Mg) across cell membranes --> magnesium cannot be drawn into cells for oxidative phosphorylation to work --> energy delivery further impaired because the release of energy from ATP is magnesium dependent, as is the synthesis of ATP from ADP --> ….

SOLUTION –

  • Interventions as above to improve energy delivery mechanisms - mitochondrial bolt on package

'Quote re circles within circles' As Black Elk [Nicholas Black Elk [Hehaka Sapa] (c. December 1863 – 17 August or 19 August 1950 [sources differ]), famous Wichasha Wakan (Medicine Man or Holy Man) and Heyoka of the Oglala Lakota (Sioux)] said:

“The Universe is circles within circles, and everything is one circle, and all the circles are connected to each other.”

So, it is with the body as it is with the Universe.

The Toxins Vicious Circle

The business of dealing with toxins requires energy – and a lot of it. Some of these toxins are external to the body, whereas others are caused by the fermenting gut, itself a result of an incorrect diet (high carbs and sugar, etc). These unwanted toxins have to be detoxified by the liver’s cytochrome P450 detox system. At rest the liver uses up 27 per cent of all the energy available to the body, compared with the brain at 19-20 per cent and the heart at 7 per cent. Much of this energy is for detoxification. In CFS/ME, where energy delivery is impaired, one may expect detoxification also to be impaired.

So, we have:

Poor energy delivery due to poor mitochondrial function --> poor detoxification --> more toxins remain present in the body’s systems --> worsening energy delivery mechanisms --> ….

SOLUTION –

The Lactic Acid Vicious Circle

We have:

Poor mitochondrial function --> means the body can switch much earlier into anaerobic respiration --> leads to a quick build-up of lactic acid (that familiar burning pain that CFS/ME sufferers experience in their muscles) --> lactic acid inhibits mitochondrial function --> ….

SOLUTION –

  • You must pace better! Energy is like money- - it is great fun spending it but jolly hard work earning it! If you overspend you have to temporarily borrow from the lactic acid loan shark - otherwise known as Anaerobic metabolism! He (and normally it is a he too!) will loan you 2 molecules of ATP, which when 'used', will produce painful lactic acid which will cost you 6 molecules of ATP in order to get rid of the pain. It is a rotten deal! In the heart, lactic acid pain is called angina. This goes unrecognised by cardiologists who call it “atypical cardiac pain”.

The ‘look-alike’ antioxidant and toxic metals Vicious Circle

We acquire a toxic load of metals in two steps. First, we are exposed to them – the two commonest examples are mercury from dental amalgam and lead from drinking water. Then we absorb them. However, the absorption of both of these common toxic metals, for example, is greatly enhanced by the fermenting gut. One of the products of a fermenting gut is hydrogen sulphide and this sulphide converts poorly absorbed inorganic metals into well-absorbed organic metals with the potential to bio-accumulate. In this way, we can see how the fermenting gut ‘helps’ the absorption of toxic inorganic metals. These toxins then bio-accumulate in the heart, brain, bone marrow and kidneys – places where the liver cannot get at them. This bio-accumulation is worse when the body is deficient in friendly trace elements – if it cannot, for example, access zinc for enzyme systems then the body will grab something which ‘looks’ similar, such as arsenic or nickel. If it cannot access selenium then it will grab something which ‘looks’ similar, such as lead or mercury. This means that the synthesis of super-oxide dismutase, dependent on zinc, or glutathione peroxidase, dependent on selenium, will both be less efficient. This in turn means that the body will be able to call on fewer of these powerful antioxidants, thereby weakening its own detox systems. This has the potential to develop into a particularly vicious circle.

So, we have:

Fermenting gut --> produces hydrogen sulphide --> hydrogen sulphide helps the absorption of toxic metals --> these toxic metals accumulate where the liver cannot detox them (eg brain) --> this accumulation is made worse if the sufferer is low in friendly trace elements because the body will grab ‘look-alike’ toxic metals to use in the place of those friendly trace elements --> the synthesis of super-oxide dismutase and glutathione peroxidase is less efficient --> the body has a poorer detox system --> toxic metals accumulate more quickly --> …

SOLUTION –

The Allergic Muscle Vicious Circle

What are allergic muscles? What seems to happen is that muscles get sensitised as a result of mechanical damage. Tearing or bruising the muscle means that it comes in direct contact with blood, which may be carrying food antigens, or possibly microbial antigens from the gut. Then the allergy is switched on at that time and the pain which follows the muscle damage, and which persists long term is mis-attributed to damage, when actually it is sensitisation. So, a torn muscle in the back from, say, lifting a heavy load, could sensitise to, say, dairy products, and it is the consumption of dairy subsequently which keeps the problem on the boil. Possibly, for example, polymyalgia rheumatica is muscles becoming allergic to gut microbes.

The diagnosis is made more difficult because there are often delayed reactions, which start 24 or 48 hours after allergen exposure and last for several days. Muscles can only react in one way, which is with contraction, and this can vary from low grade cramp and muscle tics or jumping, to acute lancinating pain. Probably the type of reaction depends on how much of the food is being consumed – regular consumption results in chronic low grade spasm and cramp, but the odd inadvertent exposure in somebody who is normally avoiding that food can cause acute lancinating pain so severe that the sufferer literally collapses. Typically, this just lasts a few seconds. Pain is triggered by stretching the affected muscle. Initially any stretch will cause it; then, as things settle down, only a sudden stretch will do that. The sufferer protects him/herself from the pain by moving slowly. Other muscles in the vicinity of the allergic muscles may also go into spasm to protect against sudden inadvertent stretching and this causes a more generalised muscle spasm and stiffness. There is a further complication because if muscles contract inappropriately they can damage themselves literally by pulling themselves apart (and, indeed, this is the mechanism that athletes employ to get fitter – if you damage the muscles slightly, this stimulates the production of more muscle). Further pain develops because the blood circulation through the muscles is disturbed and there is the build-up of toxic metabolites, in particular lactic acid and lactic acid causes pain.

So, we have

Allergic muscles causing spasm --> spasm causing build of toxic metabolites --> this build up of toxic metabolites causes more pain --> the muscles react to this pain with further spasm --> ….

SOLUTION –

The Emotional Vicious Circle

This can be summarised as below, although for each sufferer, this will be expressed in different way:

Inability to cope with situations that previously the CFS/ME sufferer would have sailed through --> Loss of self-esteem and self-worth, accompanied by feelings of inadequacy --> Further inability to cope with situations because of reduced 'emotional resilience' as a consequence of reduced self-esteem and self-worth --> Further loss of self-esteem and self-worth, accompanied by feelings of inadequacy --> …

Please accept my deepest apologies if any of these words offend or appear to trivialise, or don't seem to 'fit' your situation. This is a vast topic and I have included only a brief summary here, for completeness.

SOLUTION – can be very tough

  • Be as rigorous as possible in the treatments you have in place for identified physiological problems – this will improve physical functionality and cut off the vicious circle at the very start as the sufferer becomes able to cope with more situations.
  • Reduce demands – pace as well as possible
  • Consider psychological interventions (counselling etc) but choose your counsellor well and make sure that they understand that CFS/ME is a physical illness and that psychological interventions do not cure CFS/ME but rather may help with dealing with the awful consequences. This didn't work for me [Craig] - I had 2 counsellors - one suffered a nervous breakdown during my treatment with him, whereas the other burst into tears actually during a consultation! However, I know of many great therapists and of a great many sufferers who have been helped in this way.
  • Consider prescription or other medications or supplements – eg Valerian, Herbal Teas, Rescue Remedy, Diazepam… However, do take care here as you may hit another ‘vicious circle within a vicious circle’ here because some prescription medication inhibit mitochondrial function directly, thereby reducing your energy delivery mechanism and possibly making you less able to deal with situations that you previously were able to deal with.

The Financial /'Length of Illness’ Vicious Circle

Sufferers often ask whether the length of time that they have suffered with CFS/ME affects their chances of recovery.

There is an obvious financial/social/biologically plausible circle here which is as follows:

The longer one is ill --> the less money one has (loss of job, or cutting down hours) and the more chance there is of more biological systems becoming dysfunctional --> one has less money to deal with potentially more problems --> one becomes more ill as issues are not addressed --> potentially the less money one has (loss of job, or cutting down hours) and the more chance there is of more biological systems becoming dysfunctional --> ….

SOLUTION – can be very tough

  • Baby steps!
  • Try to do what you can and pick the easy and cheap (er) things first. See this checklist and be as rigorous as you can on Stage 2 - CFS Checklist
  • Essentially this means doing as much of Groundhog BASIC as possible – see Groundhog BASIC
  • Then as you feel better you can gradually add in new interventions
  • BUT the best way – easier said than done – is to never get into this situation in the first place. By following Groundhog BASIC and its ACUTE and CHRONIC cousins as necessary, you maximise your chances of never being in this situation at all. See Groundhog BASIC and Groundhog ACUTE and Groundhog CHRONIC

Once again, please accept my deepest apologies if I have seemed to trivialise what can be a truly awful situation. I have been there and for me, this particular Vicious Circle was very significant.

Conclusion

Breaking these vicious circles is crucial because they will only get worse!

However, the interventions often multi-task and are available to all. There is the added bonus that dealing with them can convert them into virtuous circles. For example, consider the Toxins Vicious Circle, which becomes Virtuous as below:

Good energy delivery due to good mitochondrial function --> good detoxification --> fewer toxins remain present in the body’s systems --> improving energy delivery mechanisms --> ….

Once the interventions are in place, and the virtuous circles follow, the trick is not to become complacent and ‘let things slip’ because you feel ok, but rather to keep on top of it all and do not disturb those virtuous circles, as Archimedes said:

"Nōlī turbāre circulōs meōs!" (Do not disturb my circles!)

Archimedes, Greek Mathematician, c 287 – 212 BC

Historical Note - According to Valerius Maximus, the phrase was uttered by Archimedes. When the Romans conquered the city of Syracuse after the siege of 214–212 BC, the Roman general Marcus Claudius Marcellus ordered the soldiers to retrieve Archimedes. Some soldiers entered the house of Archimedes and one of the soldiers asked Archimedes who he was. But, according to Valerius Maximus (Facta et dicta memorabilia, Book VIII.7), Archimedes just answered "Noli, obsecro, istum disturbare" ("Do not, I entreat you, disturb that (sand)"), because he was so engrossed in the circles drawn on the sand in front of him. After that, one of the soldiers killed Archimedes, despite the order of Marcus Claudius Marcellus.

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