Reprogramming the brain in CFS/ME

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(By Dr Sarah Myhill and Craig Robinson)

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:

                                     "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”.

The argument here is similar to that put forward in the Catastrophe Theory chapter of my book “Diagnosis and Treatment of Chronic Fatigue Syndrome” – please see “Diagnosis and Treatment of Chronic Fatigue Syndrome” and Catastrophe Theory and CFS

The relevant quote from Chapter 8, "Catastrophe Theory and CFS", of my book is:

…..we should first consider a different example, that of the "phantom limb". The brain has an internal map of the body and also of what is going on in the body, and this internal map may not always reflect reality. So, a limbless person may still feel as though he has a (painful) limb because of this ‘incorrect’ internal body map that his brain is still relying on. In effect, the brain has not ‘updated’ its internal map of the body in the light of new information. In a similar way, it is possible that the immune system has such an internal map of what is going on within itself and this map will reflect the situation as it has subsisted for some time, rather than the situation as it actually is now. So, just as the brain ’registers’ a limb, or limb pain, because that is the situation which has subsisted for some time, even though this is no longer the reality, so does the immune system ‘register’ CFS because that is the situation that has subsisted for some time, even though the reality is now that the patient is in a non-CFS state.

“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 and The Synergy Trial.

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 ClinicalTrials.gov webpage for full details of this study - ClinicalTrials.gov webpage for the Synergy Trial and also see Final Study Results of 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.

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
Fuel in the tank Stoneage diet Stone Age Diet
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)

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

Thyroxine or Armour thyroid.

Gear box Adrenal function Adrenal Gland - the gear box of the car (DHEA and cortisol)

Pregnenolone 50mgs

Exhaust system Liver and kidney Routine blood and urine tests for liver and kidney function.
  • Energy expenditure
Energy Expenditure Comment Detail / Reference
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
Mental energy 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
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!
Chronic infections eg Lyme Lyme Disease and other Co-infections
Chronic viral infections Valacyclovir in the treatment of post viral fatigue syndrome
and
Chronic viral presence in CFS/ME
Allergy Category:Allergies,autoimmunity and infections
Autoimmunity Autoimmune diseases - the environmental approach to treating
Immunological self-perpetuating fire – the OH/NO/OO cycles Antioxidants
Inflammation
Correct anti-oxidant status – high dose vitamin B12 by injection often very helpful
Emotional energy Difficult! Identify and address causes of stress.
Consider psychological counselling.
Ensure good sleep - -even if this means prescription hypnotics

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