Reprogramming the brain in CFS/ME

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The Energy Equation

Fatigue is the symptom we perceive when energy demand exceeds energy delivery. This is the all-important energy equation that dominates the management of CFS. It is attention to both sides of this equation that will deliver a result clinically.

Put simply, every person has their own unique energy equation which will depend upon their individual circumstances, and which will also vary with time and the differing stresses placed on that individual.

The various components of this energy equation can altered by the use of interventions such as mitochondrial support and pacing. The idea is to get the energy equation "into balance" or to a situation where energy delivery exceeds energy demand.

This equation is easily summarised as:

                                     "Available Energy = Energy Delivery MINUS Energy Demand"

In more detail, the Energy Delivery side of the equation will include the following components:

  • Fuel in the tank --Diet, hypoglycaemia, micronutrients and gut function
  • Regular servicing --Sleep
  • The engine-- Mitochondria
  • Oxygen and fuel delivery --Heart, lung, blood supply
  • Accelerator pedal-- Thyroid gland
  • Gear box --Adrenal gland
  • Exhaust system-- Liver, kidney, detoxing
  • The driver of the car --The brain

And the Energy Demand side of the equation will include the following components:

1.Normal energy expenditure:

  • Housekeeping duties – basic metabolism: heart, gut, liver, kidney, lung, hormonal function
  • Physical activity
  • Mental activity

2.Wasteful energy expenditure:

  • Immunological holes:

a. Inflammation for healing and repair
b. Inflammation in infection
c. Useless inflammation in allergy and autoimmunity

  • Emotional holes.

Charles Dickens was only too aware, personally, of the applicability of this equation, when translated into monetary affairs:

"Annual income twenty pounds, annual expenditure nineteen pounds nineteen and six, result happiness. Annual income twenty pounds, annual expenditure twenty pounds ought and six, result misery" (Mr Micawber from David Copperfield. Charles Dickens (1812-1870) )

So it is with energy as it is with money!

Brain perception of imbalances in the Energy Equation

How does the brain know when there is an imbalance? More importantly, in terms of illness management, what if its perception of such an imbalance is wrong? Such a misperception by the brain could help to explain why some CFSs do not improve despite having worked hard and corrected all those elements of Energy Delivery and Energy Demand that have been highlighted as needing to be corrected. The brain may not realise that, with all these interventions in place, it is now "safe" to spend energy. It is stuck in energy “conservation/survival mode”, or “safe mode”.

“Kick-starting” the brain

So, how can we kick start the brain out of “safe mode” into “normal functioning mode”?

Let’s look at addiction. We use addictions to cope with the uncomfortable feelings of stress which arise, I believe, when the above energy equation is compromised. We use some addictions to "plug" the emotional hole in our energy buckets – the common ones being sugar and carbohydrates, nicotine, alcohol and cannabis. Prescription drugs used to plug emotional holes include benzodiazepines, SSRIs (Yes! They are addictive!), antidepressants and anti-psychotics. We use these addictions when, through force of circumstance, we do not have enough love, laughter, sunshine, exercise, sleep, games, music and security (of relationships, finance, future etc).

We use other addictions to kick our mitochondria into life. Caffeine is an adrenaline like drug which stimulates mitochondria to increase output - however this is not sustainable in the long term – you can’t have an upper without a downer! I suspect addictions to substances like amphetamine, cocaine and ecstasy work by fooling the brain into thinking that it has bottomless supply of energy.

“If your day is gone, and you want to ride on, cocaine”, Eric Clapton, lyrics to ‘Cocaine’ You tube link to this track

These drugs allow addicts to dance all night, be mentally sharp and be outrageously funny. However it’s a dangerous ploy - if energy demand exceeds energy delivery, dramatically and suddenly, then we risk death - and of course we all know that this is possible with these drugs.

However, it may be possible to use stimulant drugs judiciously, in combination with all the other treatments for CFS, to facilitate an otherwise delayed or "not happening" recovery. This is not to say that there is a psychological block to "recovery" at all. Rather it is the case that there is an "unconscious unwillingness" of the brain to move out of "safe mode". This is not "psychological sickness behaviour" but rather a physiological response which requires a physiological "kick"!

Dr Jon Kaiser (see next section below) puts it this way:

"I believe it is reasonable to imagine very sick mitochondria as being stuck in a dysfunctional mode similar to a heart muscle that is “fibrillating”. In ventricular fibrillation, if all you do is inject supportive drugs (i.e. lidocaine), nothing happens. It is only upon “kick starting” the heart with a jolt of energy that a normal heart rhythm once again occurs."

In this sense, also, I can’t emphasise enough the importance of doing “all the other treatments”. If the underlying physical problems have not been fully addressed, then it is dangerous medicine to use stimulants to kick the brain into ignoring the energy equation. To emphasise this point – one should only consider this use of stimulants if one is sure that all that can be done to address the various components of Energy Delivery and Energy Demand has, in fact, been done. One does not want the brain ignoring a “valid energy equation” but rather one wants to “kick-start” the brain out of a “safe-mode” of operating that is no longer relevant to the individual’s current, and improved, circumstances. It is a fine line, both to identify and walk, and needs professional oversight and monitoring by an experienced CFS specialist.

The Synergy Trial

For some time I have been following the work of Dr Jon Kaiser who has been treating CFS with a combination of supplements to support mitochondria together with low doses of methylphenidate (Ritalin) – he calls this combination KPAX 002 (“KPAX”). Please see Jon Kaiser's website.

Dr Kaiser set up the Synergy Trial where he looked at reduction of symptoms in patients taking KPAX vs placebo. 36% of KPAX patient improved by more than 20% over 4 weeks (fatigue, motivation, concentration and activity) – interestingly the sickest patients improved most. Please see this webpage for full details of this study - webpage for the Synergy Trial.

These results and the full study have been published online (at A prospective, proof-of-concept investigation of KPAX002 in chronic fatigue syndrome ), with the following conclusion:

"Fatigue and concentration disturbance symptoms were measured at baseline, 4 weeks, and 12 weeks using two clinically validated tools: Checklist Individual Strength (CIS) and Visual Analog Scale (VAS). The primary outcome objective was a decrease in the total CIS score of ≥25% in at least 50% of the subjects. The mean total CIS score decreased by 36.4 points (34%) at 12 weeks (P<0.0001), corresponding to a ≥25% decrease in 87% of the participants. Treatment with KPAX002 was well tolerated and significantly improved fatigue and concentration disturbance symptoms in greater than 50% of patients with CFS. These results were statistically significant. This combination treatment is worthy of additional investigation."

This trial does not separate out the effects of mitochondrial support and methylphenidate. It would make more sense to me to compare patients taking mitochondrial support with patients taking mitochondrial support AND methylphenidate. The cynic in me suspects that KPAX 002 can be patented whilst nutritional supplements for mitochondria cannot! I would also like to see patients followed up in the longer term – to see if any such improvement is sustained.

However, this trial does raise the possibility that some patients could be “kick started” into recovery by using methylphenidate. It may be that we are already doing this with the active thyroid hormone T3 - that too is a neurotransmitter and I already have many patients whose recovery has been “kick started” by this drug. Many of them, once they have achieved functioning at a high level, have found that they can reduce T3 to physiological doses without a worsening of their symptoms.

UPDATE - Dr Kaiser has recently published again [2018] - KPAX002 as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a prospective, randomized trial. He concludes thus:

"Treatment with KPAX002 resulted in a reduction in fatigue and concentration disturbance symptoms in multiple analyses. Two key subgroups of patients whose response approached statistical significance were identified. "

Dr Kaiser has made his 63 page book “A Healing Program for Fibro & Fatigue" free for all. Please see here - - “A Healing Program for Fibro & Fatigue" Or if you would prefer, you can downlaod the book here:

"A Healing Program for Fibro & Fatigue 1st Edition"

Implications for management

I think it is reasonable to trial these interventions when all other treatments are in place - there is a check list of such other treatments below. The drug options would be:

  • Methylphenidate (Ritalin 10-20mgs daily – in regular use to treat narcolepsy and ADHD in children).
  • Modafinil (Provigil – 100-200mgs daily – in regular use for narcolepsy, sleep apnoea, appetite suppression).
  • Tertroxin (pure T3) or Armour thyroid (T4 + T3) – needs regular monitoring of thyroid function tests.

All the above also require:

  • Regular home checks of pulse and blood pressure
  • GP must be informed and ideally oversee the regime.

My guess is that it would take 6-12 months for the brain to “relearn” the new energy equation. I do not foresee dependence on these drugs for life (but I may be wrong!)

Checklist of all other treatments in place:

  • Energy delivery mechanisms – using the car analogy:
Energy Delivery Mechanism Analogy "Reality" Detail / Reference - follow the links on these links too!
Fuel in the tank Paleo Ketogenic Diet Ketogenic diet - the practical details My book - Paleo-Ketogenic: The Why and The How The Paleo Ketogenic Diet - this is a diet which we all should follow The Paleo Ketogenic Diet - meals which require no cooking or preparation The Paleo Ketogenic Diet - PK Bread The Paleo Ketogenic Diet - PK Dairy
Basic package of supplements Nutritional Supplements

Multivitamins, multiminerals, essential fatty acids, vitamins C and D

Fermenting gut Fermentation in the gut and CFS

Low carbohydrate, high fat diet, possibly digestive aids (acid with food, 90 minutes after food Mg carbonate, digestive enyzymes, bile salts). Probiotics eg Kefir
Anti-microbials such as vitamin C at night, possibly herbs or prescription drugs

Regular servicing Sleep Sleep is vital for good health - especially in CFS

8 hours of quality sleep at night, waking naturally and feeling refreshed

Engine of the car Mitochondria CFS - The Central Cause: Mitochondrial Failure

Supplements: ubiquinol 200mgs, acetyl L carnitine 1 gram, niacinamide 500mgs-1500mg slow release, D-ribose 10 grams, glutathione 250mgs
(Possibly 4 months of detox regimes – eg FIR saunaing)
See Detoxing - Far Infrared Sauna (FIRS) and Detoxification - an overview

Oxygen and fuel delivery Heart, lung, blood supply No heart disease, lung disease.

No anaemia.

Accelerator pedal Thyroid gland Thyroid - the correct prescribing of thyroid hormones
See also Conducting the CFS orchestra – how to put yourself in charge
Gear box Adrenal function Adrenal Gland - the gear box of the car (DHEA and cortisol)
See also Conducting the CFS orchestra – how to put yourself in charge and Common Hormonal Problems in CFS - Adrenal
Exhaust system Liver and kidney Routine blood and urine tests for liver and kidney function.
Driver of the car The brain See Chapter 14 of my new book - "The Infection Game - life is an arms race"
  • Energy expenditure
Energy Expenditure Comment Detail / Reference - follow the links on these links too!
Basic metabolism

(basal metabolic rate)

(uses 67% of all energy generated) We need this to stay alive!
Doing all the above will make this much more efficient.
Physical energy PACING Boring but essential.
If too much physical energy is expended then there is a switch from aerobic to anaerobic metabolism with the production of lactic acid.
This is painful, slows mitochondria even more and turns virtuous cycles into vicious cycles.
See Getting enough rest - an essential part of managing CFS and Chapter 15 of "Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis"
Mental energy PACING - The brain comprises 2% of body weight but consumes 20% of all energy Mental pacing!
Use different parts of the brain, vary mental activity.
Again boring but essential
See Getting enough rest - an essential part of managing CFS and Chapter 15 of "Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis"
Immunological energy Acute infections Viral infections - avoid them and treat them aggressively
The immune system is our standing army – armies are greatly demanding of energy and raw materials!
See also Infections: how to prevent and cure – first improve the defences and my new book "The Infection Game - life is an arms race"
Chronic bacterial infections eg Lyme Lyme Disease and other Co-infections and my new book "The Infection Game - life is an arms race"
Chronic viral infections eg Epstein Barr Valacyclovir in the treatment of post viral fatigue syndrome
Chronic viral presence in CFS/ME and my new book "The Infection Game - life is an arms race"
Allergy Category:Allergies,autoimmunity and infections and see my new book "The Infection Game - life is an arms race"
Autoimmunity Autoimmune diseases - the environmental approach to treating and see my new book "The Infection Game - life is an arms race"
Immunological self-perpetuating fire – the OH/NO/OO cycles Antioxidants
Correct anti-oxidant status – high dose vitamin B12 by injection often very helpful and see my new book "The Infection Game - life is an arms race"
Emotional energy Difficult! Identify and address causes of stress.
Consider psychological counselling.
Ensure good sleep - -even if this means prescription hypnotics and see Chapter 21 of "Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis"
See Healing the Emotional Hole in the Energy Bucket
See Balancing

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