Addressing the causes and squashing the symptoms – getting it right

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"Never Ever Give Up"

By Craig Robinson, as edited by Dr Sarah Myhill
DATE OF PUBLICATION - 22 APRIL 2022
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Introduction

I write this as an ME sufferer of nearly 30 years. I say this because what follows is a compromise and may not be the ‘best’ way of recovering from M.E. for everyone. You will have to decide where you sit on this compromise.

But my motivation for writing this page is that the longer I have had this illness, the more I think that recovery from M.E. is the art of the possible.

My definition of recovery is a sustained situation whereby you can both ‘do more’ and ‘have fewer / less intense symptoms’ AT THE SAME TIME.
[see Chaos Theory and CFS/ME recovery path]

So, for some of us, and maybe just for the time being, we must mimic politicians! Perish the thought I hear the hordes rise up! Fear not, I am merely quoting Otto von Bismarck [1815 – 1898] 

“Politics is the art of the possible, the attainable — the art of the next best”

Ironically, Otto died from gangrene in his foot and refused to accept any treatment for it; neither symptom squashing nor cause addressing!

This issue, of symptom squashing versus cause addressing, is important.

It affects recovery.

I have personally faced this dilemma and so have many of the M.E. sufferers on Dr Myhill’s Facebook group, which I co-admin with Katie Twinn – ‘Support for followers of Dr Myhill’s Protocol’ Facebook Group

It is a topic that comes up a lot.

What is the difference?

Take the example of when I fell out of a tree in my Nan’s Garden, aged 7, and landed on the remains of an old mangle, nicely embedding a couple of rusty screws in my right thigh.

1--Symptom Squashing –– take some paracetamol for the pain and maybe do something about the blood
2--Cause Addressing – go to Accident and Emergency, have the screws removed by an expert surgeon, and then ensure that follow up treatment avoids subsequent infection and possible worsening of the condition, maybe sepsis, and even death.

I am still here – my parents chose option 2!

So, two things are clear:

  • Symptom squashing intervention are usually ‘easier’ to do, and require much less thought
  • Cause addressing interventions require you to think of possible future outcomes, as well as addressing the immediate problem, thereby making sure you avoid possibly worse outcomes later down the line.

This is all well and good, and true BUT life is more complicated than that, especially when you are a human being [!] who has been ill for a very long time, with possibly little improvement, and live a very restricted life.

Read on but always keep in mind that….. 

Cause addressing interventions can also be thought of as LONG-TERM Symptom Elimination Interventions

Before moving on, it is worth stating that some interventions will have features of both symptom squashing and cause addressing and the extent of this may vary between sufferers for the same intervention. Try to be honest with yourself about which camp each intervention mainly falls in, for you personally, and then proceed as below. However, for most interventions, the distinction is usually quite clear.

Some Examples

This table gives some examples of each type of intervention. It is far from exhaustive.

Symptom Symptom suppression Causation – work out why
Fatigue Sugar
Caffeine
Amphetamines 		Address energy delivery mechanisms:

PK diet (fuel in the tank) - see The Paleo Ketogenic Diet - this is a diet which we all should follow
Mitochondria going slow (engine) - see CFS/ME - The Central Cause: Mitochondrial Failure
Thyroid underactive (accelerator pedal) - see Conducting the CFS/ME orchestra
Adrenal fatigue (stuck in first gear) - see Conducting the CFS/ME orchestra

Indigestion, reflux Acid blocking drugs such as PPIs (Proton Pump Inhibitors) e.g. Omeprazole Fermenting gut - see Fermentation in the gut and CFS/ME
Allergy - see Allergy, autoimmunity and infection pages
Muscle pain Painkillers - e.g. paracetamol, ibuprofen Lactic acid burn? (i.e. Mitochondrial dysfunction) - see CFS/ME - The Central Cause: Mitochondrial Failure
Allergy to food or microbes - see Allergy, autoimmunity and infection pages
Asthma Blue inhalers (bronchodilators) e.g. Ventolin
Brown inhalers (steroids) e.g. Becotide 		Allergy to food or microbes? - Allergy, autoimmunity and infection pages
Low grade infection? - see also My book - The Infection Game
High blood pressure Anti High Blood Pressure prescription drugs - e.g. Amlodipine High levels of bodily stressors, of which the most common is the adrenalin spikes that accompany carbohydrate diets - see The Paleo Ketogenic Diet - this is a diet which we all should follow


Note that SOME cause addressing interventions do not have to be for life. For some sufferers, once the cause has been addressed, these interventions can be withdrawn. For example, antimicrobials to kill down a chronic infection may be withdrawn, but one will need to keep in place a package to stay ahead of the game, and the interventions in this package will be for life. The PK diet is for life.

Conversely, symptom squashing interventions should never be for life, but all too often, they do become a habit and their use extends to years, even decades.

Symptom Squashing Interventions

There are sometimes good reasons to use symptom squashing interventions as below:

1--If you have suffered for a long time, with little relief, and you are at the end of your tether, and you need to feel just a little better in order to be able to carry on, then symptom squashing is for you AT THIS TIME. During this illness, thankfully not recently, I have been so physically, cognitively and emotionally low at times that I would have literally sold my soul to the Devil for even a day when I felt a little better. We have to do what we need to do to ‘stay in the game’.

2--You may not be able to think straight or even do the most basic task [perhaps even from your bed] without some symptom squashing. For example, you may not be able to develop a plan of how to introduce cause addressing interventions without some symptom squashing FIRST.

3--Sometimes, symptom squashing interventions are [very] temporary, or even maybe taken on a single day – perhaps there is a very special event you really want to attend – for example, a wedding. Using these interventions like this is benign, physiologically and beneficial, emotionally.

4--Possibly others, specific to your circumstances….

However, don’t kid yourself – I was, and still can be sometimes, a Black Belt, 10th Dan at that age old art of kidding thyself!

Don’t pretend that you are using symptom squashing ‘just for now’ and that you will look at cause addressing interventions at some later time, and then conveniently forget!

By the way, the thought pattern as above is entirely understandable, especially if the symptom squashing interventions have seemingly given you some of your old life back, and if you have lost a lot of your old life, or indeed you never had an old life in the first place because you fell ill as a child. Humans are humans. We are not machines. Our emotions are very powerful. I apologise, in advance, if the following quote, or YouTube clip, upsets anyone, especially if you are currently in the midst of despair and anguish, but for me it encapsulates the human condition: 

John Preston [Grammaton Cleric 1st Class] – What’s the point of your existence?
Mary O’Brien [Emotional Criminal] – To feel.
Equilibrium, Miramax Films, 2002'

You can see a clip of this exchange here - YouTube Clip of "Equilibrium", one minute, 22 seconds

I hope you get the point – we are emotional beings and ignoring that FACT will hamper your recovery. But we must not let our emotions become our masters.

Indeed, there are some [really] bad things about using symptom squashing interventions, especially if you aren’t “really” intending to introduce cause addressing interventions at some point.

These bad things include:

A--I repeat myself – using symptom squashing interventions MIGHT delay when you introduce cause addressing interventions. Delaying the implementation of cause addressing interventions will delay whatever recovery you can attain. This is bad, physically, cognitively and emotionally.

B--Symptom squashing interventions are not sustainable – they can be disease escalating - for example - consider proton-pump inhibitors (such as Omeprazole) – these result in hypochlorhydria [low levels of stomach acid]. An acid stomach is a vital defence against infection, is essential for digesting protein (otherwise large, antigenically interesting molecules present downstream with the potential to switch on allergy), prevent upper gut fermentation and allow the absorption of minerals. So, by symptom squashing, you are in fact escalating the very disease process that you were trying to ‘treat’.

C--There is also a specific worry – whatever may be causal in your illness may have worse downstream effects if you simply apply symptom squashing interventions and ignore cause addressing interventions – symptom squashing interventions may increase the likelihood of other ‘new’ illnesses. See "Case Study" below.

D--Permanency - you must have a plan for tapering off the symptom squashing interventions, so that they don’t become permanent. This tapering should happen naturally – as you add in cause addressing interventions, there will be less need for symptom squashing interventions.

Cause Addressing Interventions

These interventions are good, mainly for the obverse of why symptom squashing interventions are bad! So, we have –

1--Cause addressing interventions shorten the time to recovery

2--Cause addressing interventions are sustainable – they do not escalate disease

3--Cause addressing interventions do not cause or increase the likelihood of other ‘new’ illnesses – see "Case Study" below.

Case Study

Imagine a sufferer, Emma , who has Chronic Epstein Barr Virus [CEBV] infection as a big part of her M.E.

Imagine also that this CEBV has led, in her case, to Mast Cell Activity Syndrome [MCAS] – see Mast Cell Activation Syndrome (MCAS)

MCAS has some truly dreadful symptoms, and Emma finds that she simply cannot move forward on any other front, for the time being, without dampening down some of these symptoms. So, she takes a mixture of mast cell inhibitors and stabilisers. This combination of [mainly] symptom squashing medication dramatically improves her symptom load and she feels much better and begins to enjoy life, to a limited, but still very much welcomed, extent. Remember here, that we are looking at the mast cell activation as being a response to the chronic infection.

In fact, so good is the response, that Emma puts dealing with her CEBV on the back burner.

The problem with doing this is that it does nothing to address the underlying cause here – CEBV. So, why is that a problem? Other than the fact that this delays sustainable recovery, ‘leaving CEBV’ untreated is dangerous in its own right. It can cause some very nasty illnesses 'downstream'-

So, by ignoring treatment for the underlying cause, Emma risks contracting some very nasty other illnesses further down the line.

Addressing the cause in this case would involve killing down EBV with a variety of antivirals – see


It is much easier to write about this topic than to live it! I know that because I have done, and am still doing, both!

And I truly do not mean to be ‘holier than thou’ here. Remember I write from experience i.e., mistakes that I have made. Really the point here is that leaving underlying causes untreated will not only affect your current [awful enough] illness, M.E., but it may also introduce new illnesses to your life.

"I feel like giving up"

We all feel like this sometimes, and some of us feel like it a lot, or even all of the time.

This disease is relentless and feelings of "giving up" are very natural.

These feelings can especially hit home when trying interventions - sometimes it just seems like they aren't working. But the interventions (see Overview of CFS/ME protocol and CFS/ME Protocol - order of introduction of interventions) do take time, and probably take longer if you are more ill, and / or have been ill for longer. There are also the so called "DDD" reactions to take into account - Diet, Detox and Die-off Reactions: expect to get worse. 

"Patience is a virtue"
 Proverbial phrase referring to one of the seven heavenly virtues said to date back to "Psychomachia," an epic poem written in the fifth 
century AD by the Late Antique Latin poet Prudentius
Aptly perhaps, Psychomachia translates as the "Battle of Spirits"

But Patience is understandably a rare commodity among the chronically sick.

I have tried to address these issues and feelings in the following pages:

On that last point, sometimes perspective can help - see the graphics below - I am aware that graphics like this will not help everyone, in fact they may annoy some, especially those of you among the severe and very severe sufferers. There have been times, when if someone had shown me those graphics, they would have been on the receiving end of a torrent of expletives. No doubt about it. But, my point is just this - sometimes, things do get worse because the body is healing. Only you, the sufferer, will know if this may be the case in your individual circumstances.

Healing 1 50.jpg

Dips 2 50.jpg

When all else fails, hang on, just like the poster that used to hang in Dr Myhill's waiting room said, when I first used to visit, and as seen at the top of this page - "Never Ever Give Up".

Or as Churchill said - K.B.O. - Keep Buggering On!. It is said that he used this phrase at the start of each day and at the end of every telephone conversation and adjusted his wording to Keep Plodding On if in the presence of a lady!

Conclusion

There are times when symptom squashing interventions are a necessary thing to do so that progress can be made on mapping out what cause addressing interventions to employ BUT

  • Always have a plan of cause addressing interventions and do your very best to stick to this plan
  • Never use symptom squashing interventions as a smoke screen for not introducing cause addressing interventions
  • Have a plan for removing symptom squashing interventions
  • Remember that cause addressing interventions are LONG TERM symptom elimination interventions
  • Remember that cause addressing interventions prevent disease escalation and don’t introduce ‘new’ diseases ‘down the line’ - symptom squashing interventions often can and do both.

Like all things to do with this illness, it is a VERY delicate balancing act, and each sufferer will have to work out [and walk!] their own path. I think the essence is this:

Symptom Squashing – use judiciously so as to give short term relief so that you can survive in the ‘here and now’, and so that you can determine your longer-term plan of action and move forward

Cause addressing – these interventions give you a sustainable route to walk the path of recovery

It won’t be a direct upward path and you may have to introduce symptom squashing interventions here and there, along the way, but try to ensure that you do this to the absolute minimum level required, and also that your direction of travel is away from symptom squashing interventions and towards cause addressing interventions.

Apology and Victim Blaming

As always, I think of the severe and very severe M.E. sufferers. This page may seem very glib and possibly it is in parts. I have tried to convey a complex idea in as simple a way as possible and inevitably that might result in a certain amount of superficiality.

Some M.E. sufferers are so severe that all they can think of, all they want, and all they CAN do, RIGHT NOW, is to hope and look for symptom suppressing interventions. I cannot argue against that because I KNOW these people and I KNOW how they suffer. I have been there – at the severe scale anyway. I am certainly not the Oracle of Delphi [wrong gender for a start! See Historical Note below]. But what I have described here has helped me and I know many others who have been helped in a similar way.

To the severe and very severe sufferer – if I have offended, please accept my sincere apologies. My only intention in writing this is to help those who may be helped by my recounting of my experiences.

Moreover, none of this article is intended to be victim blaming. I apologise further if anything I have written has come across that way.

I have experienced many instances of victim blaming, as I am sure all ME sufferers have, and I would not wish it on my worst enemy.

One example involved my GP telling me, as I lay in my bed, and had done so, at that time for about 30 months, that I should 

‘effing just get out of bed’

because I was 

‘effing ruining the lives of your amazing wife and two gorgeous children’

The GP was right about my wife and children but WRONG about everything else.

Another example was my Cognitive Behavioural Therapist physically pulling me out of bed because they didn't believe that I couldn't move. This resulted in me landing awkwardly on the floor and sustaining bruises and cuts, after which said therapist tutted loudly and left the room, with me stranded on the floor, until my wife came home.

Historical Note

The high priestess of the Temple of Apollo, situated at Delphi, and known as Pythia, held the position of the oracle of the temple and was known as the Oracle of Delphi. Famous as the site of the pronouncement of many predictions that changed the course of history, the Temple of Apollo also has the so called ‘Maxims of Delphi’ inscribed on it.

There are 150 such maxims, with 3 being known as the ‘Entrance Maxims’ - inscribed on a column in the pronaos (forecourt).

These are:

  • Know thyself
  • Nothing in excess
  • Surety brings ruin

Perhaps I shouldn’t have bothered writing this article and instead directed the interested reader to follow the Entrance Maxims of Delphi!
See also Delphic Maxims

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