Conducting the CFS orchestra
By Dr Sarah Myhill and Craig Robinson
Conducting the CFS orchestra – how to put yourself in charge
Allowing the body to heal from any condition is like conducting an orchestra. Not only do we need to know who all the players are, but these players also need to be playing the right tune at the right time. Then you get a melody!
Eric Morecambe, in that immortal tv scene, knew this when it came to playing Grieg’s Piano Concerto ………….
Andre Previn “Mr Morecombe – you are not playing the right notes!”
Eric Morecombe, in confident mode……… “Mr Previn, I can assure you I am”
……….and then slightly bashful…..
“I am playing all the right notes………… but not necessarily in the right order!”
Please see Eric Morecambe Andre Previn clip
This is particularly the case with CFS/ME. Remember:
- CFS = poor energy delivery mechanism,
- ME = CFS PLUS inflammation.
Energy Delivery Mechanisms
Let us first look at energy delivery mechanisms. As an aside I am now very aware that we do not have the doctors to advise or prescribe. So, we have to develop those interventions that people can do themselves.
With respect to energy delivery mechanisms I think there are 4 key players namely:
- fuel (diet)
- mitochondrial (engine)
- adrenals (gear box) and
- thyroid (accelerator pedal).
Not only must they all be performing at the same time but so as to correct mechanisms we must address them in a particular order. I think I now appreciate what that order is. The order is what Eric Morecambe was getting wrong and why his rendition of Greig's Piano Concerto sounded so awful!
The Correct Fuel
FIRST – diet.
The preferred fuel of mitochondria are ketones. These come from fat in the diet and the fermentation of fibre in the large bowel. The diet may be the most difficult thing you need to do to recover but really without this in place the power of subsequent interventions will be greatly diluted. For example, if you are eating any carbohydrate then you will have a fermenting upper gut. In the presence of such you will malabsorb – simply because there are always some microbes in the gut and these microbes are at the front of the food queue! Without good gut function you cannot absorb the missing nutrients essential for the engine of your body. There is much more detail about diet in our books - see: “Diabetes” for WHY a paleo-ketogenic diet is so crucial and the “PK Cookbook” for HOW to achieve such a diet. See "Prevent and Cure Diabetes - delicious diets not dangerous drugs" and "The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds" respectively.
I think diet impacts directly on core temperature in several possible ways:
- A high carbohydrate diet results in fluctuating blood sugar levels. As these fall, adrenalin is poured out and this will spike core temperature (often by making the hands and feet feel cold as peripheral circulation is shut down).
- Fluctuating blood sugar means that fuel delivery to mitochondria is “on” then “off”……so mitochondria run fast then slow…..and so core temperature will wobble. (The engine of my car is the same – the heater works when it is going fast and packs up when slow – yes – like me - it is an old truck! My 1978 MGB GT has similar problems but I can forgive 'Gatsby' anything - Craig).
- A high carbohydrate diet results in fermenting gut. These microbes get into the blood stream where the body reacts with a “fever” response – and temperature spikes. They get into the bloodstream via a process called bacterial translocation – see here - “Bacterial translocation from the gastrointestinal tract.” Author - Berg RD. Publication - Adv Exp Med Biol. 1999;473:11-30.
By contrast a ketogenic diet does none of the above – even better, fibre is fermented constantly in the large bowel to generate heat and this helps to keep us warm. Indeed, herbivores such as my grass and hay eating horses fuel their body entirely from fermenting fibre – this generates so much heat that their normal core temperature runs up to 38.5 degrees centigrade.
The Mitochondrial Engine
SECOND – mitochondria.
Almost always these are going slow in CFS. We know this from our first paper (“Chronic fatigue syndrome and mitochondrial dysfunction”). As importantly our third paper (“Targeting mitochondrial dysfunction in the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a clinical audit”) showed that when the necessary nutritional supplements are in place, together with the detox regimes, then mitochondrial function improves reliably well. The detail of how to do this is in our book “Diagnosis and treatment of CFS/ME it’s mitochondria not hypochondria” - see Diagnosis and Treatment of CFS/ME - it's mitochondria, not hypochondria!
The supplements are
- magnesium 300mgs,
- co Q 10 100-200gs, (as ubiquinol)
- acetyl carnitine 500mgs-1gram,
- niacinamide 1500mgs slow release and
- D ribose 5-15 grams daily.
Mitochondria may be going slow because they are blocked. The two tests for toxicity would be:
- For volatile organic compounds and pesticides: toxic effects core profile from Genova email Gail (email@example.com) to order
- For toxic metals: urine elements following DMSA 15mgs/kg chelation: see Toxic Elements in Urine following DMSA and Toxic Elements Screen Urine Sample Test
Remember every engine needs servicing and mitochondria need 8-9 hours of quality sleep, taken at the right time in every 24 hours to heal and repair the metabolic damage of every day. You must be as disciplined, possibly more disciplined, about sleep as you are diet. See Sleep is vital for good health - especially in CFS
The Adrenal gearbox and the Thyroid accelerator pedal
THIRD AND FOURTH - Adrenal and Thyroid glands
Just like a car, the accelerator (thyroid) and gearbox (adrenal) work together in order to precisely match energy delivery to energy demand. Optimal use of energy is a critical survival mechanism – energy wasted is a survival loss. But how to do this well?
However, we now need to add in some clinical fine tuning, as in any good car service. The best and cheapest measure of overall energy generation in the body is to measure the core temperature. The ‘at rest’ core temperature should be remarkably stable. This makes perfect sense – all enzyme systems in the body are temperature dependent – if temperature fluctuates you get a “now we are working well” to a “now we are going slow” change of states! This is inefficient. Ask any factory production manager - the more constant the supply of raw materials and environment the more efficient is production.
Core temperature has often been used just to diagnose an underactive thyroid. However, it is actually a measure of the combined effects of diet, mitochondrial function, thyroid and adrenal function. This is why it is so important for the PK diet to be established and the mitochondrial lesions corrected. Core temperature then becomes a correct measure of combined thyroid and adrenal function.
What is so interesting is that the adrenals and thyroid hormones manifest on core temperature in different ways and this allows us to tease out what is a thyroid and which is an adrenal issue.
Broadly speaking thyroid hormones “base load” for the coarse tuning of body temperature and so we are warm by day and cool by night. Adrenal hormones are responsible for the “fine tuning” over the seconds, minutes and hours and they do this in response to environmental demands. An outpouring of adrenalin in response to a stressful demand will double the output of mitochondria in seconds – this would allow me to run the fastest 100metres ever if faced by a sabre-toothed tiger! Over minutes this allows me to feed my horses and pigs. Over the hours it allows me to work physically and mentally.
Not all energy is used for actions – some is “wasted” as heat. Of course, some heat is essential for life, but some will be wasted – in that event we feel too hot and we sweat to lose that heat. However, core temperature should stay pretty stable. If not stable, that tells us that the adrenal gear box function is not tightly linked to demand and energy is wasted. Wasted energy means we have less “energy” to “spend” on life……it is like tearing up £10 notes!
If the thyroid is going slow, then the adrenals gear up and vice versa. In the short term if adrenal hormones are used because thyroid hormones are not available then patients suffer “tired but wired” symptoms. This may be a particular problem if they are doing a ketogenic diet because their body will then use adrenal hormones to fat burn. They are biochemically in ketosis, but they suffer the symptom usually associated with low blood sugar (which in fact are adrenalin symptoms). This is called ketogenic hypoglycaemia.
So, in this case, what we have here is
- Thyroid is going slow
- Adrenal hormones are used to compensate for this – there is a greater effect here if doing the ketogenic diet because thyroid hormones are used to burn fat and thyroid is going slow any way
- Person then suffers the symptoms of high adrenalin – which are the same symptoms as you suffer with low blood sugar (hypoglycaemia)
We run into even more serious problems when both thyroid and adrenals are down and this combination, surprise surprise, is very common in CFS.
The Practical Details
To diagnose thyroid and adrenal issues we need to use the techniques of Dr Rind. I do recommend you see his website for details Dr Rind Metabolic Therapy
1-Get yourself a thermometer which records to an accuracy of at least 0.1 degree centigrade (or Fahrenheit). Amazon.co.uk Link for One Step Digital Basal Thermometer
2-The most accurate reading is rectal temperature – but this is not convenient! I suggest you measure rectally once and compare this with the temperature under your tongue. I recommend doing oral first and then go for yer bottom! Expect to see a difference of about 0.3-0.6 degrees centigrade. Mine is 0.4 degrees. The point here is that the average core rectal temp should be 37 degrees – so the average under the tongue temp should (in my case) be 36.6 degrees.
3-Record your temperature in exactly the same way regularly through the day (under the tongue). Take the first temperature on waking. What we need is a “video” of correct temperature not a snapshot. It is better to do 20 temperatures readings over one day than one reading daily over 20 days!
4-Graph the results. Add in relevant comments that may influence temp eg recent meal, activity, stressor – you will soon get a feel for what is going on.
[See '5' and '6' below too!]
Interpretation of the results
Some factors influence temperatures from day to day. For example:
- during a normal menstrual cycle, temperatures will spike mid cycle and remain higher during the latter half.
- if you have an infection then body temperature will run higher (for some people who are very fatigued they may not even have the energy delivery mechanisms necessary to spike a fever!)
- it is normal, indeed highly desirable and necessary, for core temperature to fall at night. Indeed, it is falling core temperature which encourages and initiates sleep and rising core temperature in the morning (due to a spike of thyroid and adrenal hormones) which wakes us up. I suspect being an OWL is typical of a thyroid and adrenal issue.
Once you have a graph you will be looking at this in two ways:
5-What is the average temperature during your waking day? In the absence of illness or excessive physical activity the average core rectal temperature should be 37.0 degrees centigrade (98.6 degrees F). Do remember the difference detailed above – my core oral temperature is 36.6 degrees centigrade. If your average core temperature is low, you have a thyroid problem.
6-How much do the readings wobble? If they wobble by more than 0.6 degrees, then you have an adrenal problem.
AGAIN - remember the above guidelines only apply if you are fuelling your body with ketones AND you have normal mitochondrial function.
Do have a look at the metabolic temperature graphs of Dr Rind which give some examples of thyroid and adrenal issues Dr Rind Metabolic Temperature Graph. Again, remember these graphs will be very difficult to interpret if you are not ketogenic and/or have abnormal mitochondrial function. Apologies for labouring this point but it is vital!
If you do want my help to interpret your temperature readings then please send your temperatures through in the following format:
|Day||Oral or rectal, number of measurements in day||Average temp (reflects thyroid)||Temp range (ie the lowest in the day and the highest in the day - the wobbles reflect adrenal function)||Daily temps vary by||Extra notes|
|Monday||Oral x 8||36.4||35.7-36.6||0.9||N/A|
|Tuesday||Oral x 10||35.6||35.5-35.7||0.2||N/A|
|Wednesday||Oral x 14||37.2||35.9-38.6||2.7||Feeling ill -- ?feverish|
The average temperature is the total of all the days temps divided by the number of readings
Nutritional Support with adrenal and thyroid glandulars
Thyroid and adrenal glandulars provide the best nutritional support when these glands are wanting. What this means in practice is that the man on the Clapham omnibus (see Historical Note below!) can access safe and effective support directly.
I use “Procepts Nutrition” glandulars, available through The Natural Choice:
- Porcine thyroid gland – metavive I or metavive II
- Bovine adrenal cortex - adrenavive II or adrenavive III
The Porcine thyroid glandulars are sourced from RSPCA approved farms of outdoor-reared, UK pigs. The bovine thyroid and adrenal cortex are from BSE-free, grass fed, free-range cows from New Zealand.
For the thyroid glandulars, the whole gland is used, but for the adrenal glandulars only the outer cortex is used. The inner adrenal medulla is where adrenalin and noradrenalin are produced and this is removed during the process. Some people like to use whole adrenal glandular adrenavive I comprised of cortex and medulla
If you have a core temperature that wobbles [ADRENAL]
If you have a core temperature that wobbles by more than 0.3 degrees C then you will benefit from bovine adrenal cortex glandular.
- For adrenal support, start with one capsule of adrenavive II daily (on rising). Continue to monitor your core temperature and “listen” to your body! Wait two weeks.
- If all goes well increase to two capsules of adrenavive II (one on rising and one midday). Wait two weeks.
- Most people end up needing adrenavive II 2-6 (equivalent to adrenavive III 1-3) daily.
- Start with adrenal support before moving on to thyroid support.
If you have a low average core temperature [THYROID]
If you have a low average core temperature, then you need thyroid glandular.
From experience we find that the following regime best supports the thyroid gland. The principles of support are as follows:
- Continue with your normal PK diet. Remember, if you are fuelling your body with carbohydrates then this causes high blood pressure because as blood sugar wobbles the stress hormone adrenalin is released – you must be PK adapted for at least this reason.
- If indicated, take mitochondrial supplements as detailed above.
- Start with metavive I. Take one capsule on rising. Continue to measure your core temperature though the day. It may take 2 weeks to see a response, so do not adjust your dose for 2 weeks
- If all goes well go to: metavive I one on rising plus one metavive I midday.
- Build up slowly adjusting one capsule increments every two weeks. You will have to do this slowly in order to find your “sweet spot”. If you adjust too fast you may miss this.
- Fine tune using average core temperatures according to the Dr Rind methods detailed above. Most use between 2-6 capsules of metavive I to optimise their average core temperature (equivalent to 1-3 metavive II).
- During this time, it would be prudent to check your pulse and blood pressure. It is typical of sick patients that they have low blood pressure because energy delivery mechanisms to the heart are so poor that it cannot beat powerfully as a pump.
If your temperature is not settling on this regime then this may point to chronic infection being a problem - ie your body is trying to run a fever to deal with such
Once done (all in the right order) you shall play just as Previn wanted and not as Morecambe delivered:
- "Prevent and Cure Diabetes - delicious diets not dangerous drugs"
- "The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds"
- Diagnosis and Treatment of CFS/ME - it's mitochondria, not hypochondria!
- Sleep is vital for good health - especially in CFS
- Ketogenic Diet - the practical details
- CFS - The Central Cause - Mitochondrial Failure
- Toxic Elements in Urine following DMSA
- Eric Morecambe Andre Previn clip
- My online shop for 'A Mitochondrial Package (Starter Kit'
- Dr Rind Metabolic Therapy
- Online Sales@DoctorMyhill shop
- Amazon.co.uk Link for One Step Digital Basal Thermometer
- Dr Rind Metabolic Temperature Graph
- Wikipedia, The man on the Clapham Omnibus
- Khatia Buniatishvili plays Grieg's Piano Concerto
- “Bacterial translocation from the gastrointestinal tract.” Author - Berg RD. Publication - Adv Exp Med Biol. 1999;473:11-30.
- “Chronic fatigue syndrome and mitochondrial dysfunction”
- “Targeting mitochondrial dysfunction in the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a clinical audit”
"The man on the Clapham omnibus is a hypothetical ordinary and reasonable person, used by the courts in English law where it is necessary to decide whether a party has acted as a reasonable person would – for example, in a civil action for negligence. The man on the Clapham omnibus is a reasonably educated, intelligent but nondescript person, against whom the defendant's conduct can be measured.
The term was introduced into English law during the Victorian era, and is still an important concept in British law. It is also used in other Commonwealth common law jurisdictions, sometimes with suitable modifications to the phrase as an aid to local comprehension. The route of the original "Clapham omnibus" is unknown but London Buses route 88 was briefly branded as "the Clapham Omnibus" in the 1990s and is sometimes associated with the term.
The phrase was first put to legal use in a reported judgement by Sir Richard Henn Collins MR in the 1903 English Court of Appeal libel case, McQuire v. Western Morning News. He attributed it to Lord Bowen, said to have coined it as junior counsel defending the Tichborne Claimant case in 1871."''
Nowadays, the term refers to the 'ordinary' man or woman on the street.
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