Self-compassion to reduce the stress response in ME/CFS/SEID
Most lists of self-help tips for ME/CFS/SEID will emphasise that acceptance of the disease is important; the patients who accept rather than push and rail against the disease tend to have a better prognosis. Hostile resistance also increases hyperventilation. These patients may be thinking “but I can’t afford to be ill”, or “what am I if I cannot do the work that defines me”, or “I am useless if I cannot support my family” –and judge themselves harshly.
So self- compassion is the order of the day, again something I hear about a lot, but listening to self-compassion expert Kristen Neff’s video I understood it more fully: self-criticism and harsh judgment of ourselves can be considered as part a primitive defence response – a harsh motivator that can help us succeed – but it can activate the fight or flight or sympathetic (threat) part of the autonomic nervous system, releasing stress hormones and contributing no doubt to breathing disorders.
(I wrote a blog post about a link between ME/CFS/SEID and fight or flight or freeze)
So even if harsh self-criticism did not have a role in your disease onset, it may slow down your recovery –it is very hard for someone with such a disease to avoid self-criticism in the presence of such disability and possibly lack of understanding from health care professionals and friends and family who might think that you are malingering rather than sick.
“With self-compassion, we give ourselves the same kindness and care we’d give to a good friend”.
So learning self-compassion can be a step towards switching from “fight or flight” to parasympathetic “relax rest and restore”.
Breathing can be considered to be the bridge between the emotions and the body, and breathing retraining for ME/CFS/SEID also helps calm the sympathetic nervous system and restore a more healthy breathing pattern – where parasympathetic activation is favoured -that can get oxygen more efficiently to all body systems.
Is ME/CFS/SEID linked to disordered breathing/overbreathing/hyperventilation?
Dr Peter Litchfield, a breathing expert notes that “Overbreathing can be a dangerous behaviour immediately triggering and/or exacerbating a wide variety of serious physical and mental symptoms, complaints, and deficits in health and human performance.”
So does overbreathing or hyperventilation play a part in ME/CFS/SEID?
1) Hyperventilation symptoms are very like those of ME/CFS/SEID
“Hyperventilation syndrome (HVS) can show itself in different ways. Most people with HVS will experience some, or many, of the following symptoms:
Respiratory: breathlessness tightness around the chest fast breathing frequent sighing
Tetanic: tingling (e.g. in fingers, arms, mouth) muscle stiffness trembling in hands
Cerebral: dizziness blurred vision faintness headaches
Cardiac: palpitations tachycardia (rapid heart beat)
Temperature: cold hands or feet shivering warm feeling in the head Gastrointestinal: sickness abdominal pain
General: tension anxiety fatigue and lethargy insomnia”
(this information was taken from my local Derbyshire NHS Community Health info on Hyperventilation Syndrome, and it is great that they recognise it).
Any and every system in the body can be affected. Here is a more detailed list, not everyone has the same symptoms, genetics also plays a part.
2) Hyperventilation depletes the tissues of oxygen
a. Low levels of CO2 stop release of oxygen from the blood
Short of breath? Breathe less! Says Dr Myhill, well known CFS expert.
“Many patients, particularly asthma patients, but also CFS patients, have a sensation that they are not getting enough oxygen to their tissues. Their response to this is to breathe more deeply. However blood cannot become more than 100% saturated with oxygen. All that happens is that more carbon dioxide is washed out of the blood. This makes oxygen cling more fiercely to haemoglobin in red blood cells and therefore oxygen delivery to the tissues is made worse! Paradoxically, to improve oxygen supply to the tissues you have to breathe less! Breathing less increases carbon dioxide levels and improves oxygen delivery.”
b) Low levels of CO2 reduce blood flow to the brain
Dr Medows researches orthostasis (feel worse when standing) and ME/CFS “Some of those with ME/CFS and orthostasis (feel worse when standing) also experience very rapid, deep breathing during an orthostatic challenge, like trying to catch your breath after strenuous exercise. This hyperventilation, in turn, leads to reduced carbon dioxide (CO2) levels, or affecting the pH of the body. And, guess what? One of the most powerful modulators of brain blood flow happens to be CO2. The lower the CO2, the lower the cerebral blood flow.”
Dr. Medow’s hypothesis: that the reduced cerebral blood flow and brain fog occurs, at least in part, because of impaired control mechanisms for regulating C02 and/or blood pressure.
3) Learning to breathe less can help ME/CFS/SEID symptoms
Breathing normalization by re-education can help; you can find some success stories here.
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A new name “systemic exertion intolerance disease” (SEID) for ME/CFS?
In the USA the Institute of Medicine (IOM) are recommending a change of name for ME/CFS to SEID or systemic exertion intolerance disease. It is controversial, as 
expected, but the advisory panel recognise ME/CFS as “a legitimate, serious and complex systemic disease that frequently and dramatically limits the activities of affected individuals.”
They also recognise that ME/CFS is a physical disorder, not a psychological illness.
“Diagnosis of ME/CFS requires that a patient have the following three core symptoms:
- A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest
- The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise
- Unrefreshing sleep
At least one of the two following manifestations is also required:
- Cognitive impairment
- The inability to remain upright with symptoms that improve when lying down—known as orthostatic intolerance
These symptoms should persist for at least six months and be present at least half the time with moderate, substantial, or severe intensity to distinguish ME/CFS from other diseases”.
Why is a new name for ME/CFS needed?
The renaming is important because:
“• Several studies have shown that the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promote misunderstanding of the illness.
- The term “myalgic encephalomyelitis” is not appropriate because there is a lack of evidence for encephalmyelitis (brain inflammation) in patients with this disease, and myalgia (muscle pain) is not a core symptom of the disease.
- The Institute of Medicine (IOM) committee recommends the name systemic exertion intolerance disease (SEID) for this disease.
This new name captures a central characteristic of this disease— the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in many organ systems and in many aspects of their lives. To learn more, and to access the IOM committee’s proposed diagnostic criteria for ME/CFS, visit the IOM website.”
“Diagnosing ME/CFS often is a challenge, and seeking and receiving a diagnosis can be frustrating due to the skepticism of health care providers about these patients and the serious nature of their disease”
Hopefully the new definitions will help with diagnosis and end scepticism of doctors and the public (I know what you mean, I am exhausted too…)
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Self-improvement is a big job. Breath retraining requires personal discipline and effort.
Yes, self-improvement is about awareness and sticking with it, it’s not just for January.
I love this inspirational quote from Doe Zantamata:
Self-improvement is a big job.
It’s like rebuilding a house. Some things need a little touch up, some could use repair, and sometimes a whole section needs to be torn down and rebuilt.
But it can’t just be non-stop work.
You need rest. A good meal. A day off to enjoy the sunshine or just do fun stuff without thinking much at all.
It may feel like you want to just get everything fixed right now but you’ve got to be patient with yourself and step back and admire all the work you’ve done and are doing along the way.
That’s the only way to stay encouraged for the long haul.
Real and lasting self-improvement is a lifetime achievement, not an overnight success.
-Doe Zantamata
And here is a real-life story of someone I know that mirrors much of this. Sticking with it is certainly a theme here too. Steve Darch, a breathing educator colleague has kindly allowed me share his story of:
Recovery from Chronic Asthma, COPD stage 2 and Bronchiectasis
“I played 36 holes of golf yesterday on a very hilly course and carried my clubs despite it being very wet and muddy underfoot.
I was never at any point out of breath, my energy and concentration levels were good and woke up this morning with no aches and pains!!
If five ýears ago having been hospitalised on a regular basis and diagnosed with Chronic Asthma, COPD stage 2, Bronchiectasis and taking every medication ever invented someone had told me I was going to be able to do this I would have laughed in their face.
I believe that my healing process is still continuing and although getting older I feel younger and more energetic by the year.
I can 100% put this down to correcting my breathing.
Since changing my breathing I have lost around three stone and maintained this loss (three years) despite at times not eating or drinking as I should. Coming off medication and in particular steroid medication and reduced emotional eating improved my digestive system as well. (NB never come off medications without your doctor’s consent, as this could be dangerous. Steve could only reduce his medications because his condition had improved).
I still monitor my breathing on a regular basis but have learnt to enjoy the breathing exercises and these are now built into my daily lifestyle.
I have been signed off by my NHS Consultant and my lung function continues to improve.
At the same time I have seen a huge reduction in lung infections, coughs, allergies, flu etc.
This did not happen overnight!!!
From observing my clients many expect unrealistic changes to happen quickly and give up on their breathing exercises too quickly because it can be hard work and involves personal discipline and effort.
I believe change happens slowly and gradually and we sometimes forget how far we have moved forward since changing our breathing.
If we also consider with ageing and continuous medication how our health might be now if still hyperventilating the changes for me have been massive”.
He is not surprisingly passionate about helping others. Steve’s Natural Breathing Training website.
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ME/CFS/fibromyalgia/anxiety: are you stuck in fight or flight?
Fight or flight or freeze -the threat response, being on red alert
The fight or flight (or freeze) response is useful to deal with an immediate threat or danger, for example to fight or escape from a predator; or perhaps freeze in the case of a baby animal too small to run or fight, wanting to escape the predator’s gaze by keeping still. Fight or flight is when the sympathetic part of the autonomic (automatic or involuntary) nervous system is in charge (rather than the parasympathetic – rest and restore).
The brain becomes aware of danger due to messages received from the senses. Hormones are released and the sympathetic nervous system sends signals to various parts of the body to produce the changes seen below which “turn down” systems not needed immediately and focus on getting blood to the leg muscles for example :
- Adrenaline surges
- Heart and breathing rate increases
- Blood is diverted away from the skin
- Blood diverted to large muscles
- Less saliva is produced causing dry mouth
- Brain on red alert –more sensitive to sounds e.t.c.
- Airways widen to let in more air
- Increased sweating to cool down
- Digestion slows down
- Liver releases glucose for instant energy
- More blood produced and clots more easily
- Immune system suppressed while immediate threat dealt with
When being stuck on red alert is unhelpful
Normally, when the immediate danger or threat has passed, the red alert or threat response should subside, but this does not happen efficiently when hyperventilation becomes chronic. A disordered breathing pattern usually includes chronic hyperventilation, often mouth breathing, and upper chest breathing, with the stomach held in tightly. People frequently have a wide range of symptoms. They are constantly on red alert, even when there is no threat. This condition is sometimes called the “fat folder syndrome” as patients are sent for multiple tests and may have many medical reports in their file. Any system in the body can be affected; nervous, respiratory, immune, circulatory, digestive, musculo-skeletal e.t.c. This adaptation of the body is now not helpful but very unhealthy; it can keep people in pain and discomfort and disability with a very poor quality of life.
- Blood vessels spasm causing high blood pressure, reduced blood supply to the brain and other tissues
- Brain oversensitive to light and noise, anxiety, depression difficulty concentrating, headaches
- Hyperventilating causes chronically blocked nose and dry mouth
- Feel tired and weak
- Heart pounding, racing or erratic- fear of serious illness
- Stomach bloating, IBS, constipation or diarrhea
- Skin pallid, extremities cold,but hot and sweaty palms
- Frequent urination
- Sore muscles
- Dry itchy skin
- Numb, tingling or cold extremities
- Decreased immune response- increased infection?
- Poor sleep
A more comprehensive list of symptoms is here.
Breathing is such a basic and fundamental need that it is often overlooked by the medical profession with the assumption that “it takes care of itself”. Luckily it can be corrected, and many symptoms are often dramatically reduced. The symptoms can start to reduce once breathing is improved, becomes more relaxed, calmer, gentler, quieter -allowing the parasympathetic rest and restore to dominate and oxygen reaches the tissues more efficiently.
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How did we get a disordered breathing pattern/hyperventilation in the first place?
It is fascinating to note that before World War 2, the normal minute volume for breathing was 4-6 litres per minute, but this increased to ~12 litres per minute by the 1990’s.
Something has been going on:
20th/21st century lifestyle –all these factors can encourage you to breathe more than you should:
- Overeating, eating processed foods
- Sedentary lifestyle/poor posture encouraging upper chest breathing
- Helpline type jobs –lot of talking
- Centrally heated homes/”soft lifestyle” soft beds, oversleeping
- Environmental pollution
- Belief that deep breathing is good for you –breathing more and more when you feel breathless
- Information overload –internet, gadgets –“screen time” linked with poor sleep
- CHRONIC STRESS –the big one!
Dr Buteyko defined stress as anything that causes you to breathe more than you need to.
Stress can be emotional or physical.
A good example is someone I know who sustained a very nasty broken leg in a skiing accident. She had the initial physical stress and pain of the injury to deal with; suboptimal surgery in a non- state -of -the -art foreign hospital, of painful travel home; emotional stresses insurance to sort out, weeks off work, immobility, worry about the future, many, many visits to hospital for X- rays that showed lack of annealing of the fracture; the stress of expecting to see the consultant who could handle the complicated case but seeing junior doctors who gave conflicting advice; further surgery and bone grafts; physical stress of more pain and 6 months of having to sleep on her back to keep the injured leg straight. (You can breathe up to twice as much sleeping on your back as your side).
Not surprisingly her breathing pattern suffered. You get the picture, chronic stress can lead to chronic hyperventilation/disordered breathing pattern.
And what are the symptoms of disordered breathing/hyperventilation? Numerous, including increased pain and panic, which can make you breathe more, depleting your body oxygen and causing a vicious cycle.
A client with ME/CFS described rather well the time leading up to her health collapse as “a decade of crises”- the breathing can slide into abnormality without you noticing, and stay that way as it is eventually accepted as normal. For some, ill health comes out of the blue or “I was fine until I had that cough, then I never really got better” but for many “I just didn’t feel right for several years” with IBS/anxiety e.t.c. creeping up on them.
So physical factors causing stress could include: pain; illness and injury; infection; toxic environment/pollution, and emotional stressors could be: work stresses (indifferent, bullying or inconsistent management); or not having a job; financial worries; toxic relationships; exams; bereavement; new baby e.t.c, e.t.c
Many women in their 40’s may find themselves sandwiched between the demands of teenage offspring and aging parents, also holding down a job, with their own needs being ignored. 
With today’s culture, many people put their job before their health, dosing up on decongestants when they have the flu and soldiering on rather than resting and recuperating.
The work/life balance is a difficult one, I heard someone say she doesn’t have time to look after her health while she is working –it’s OK for retired people! Something badly wrong there….
Luckily a disordered breathing pattern is something that can be put right; surely it is worth it to safeguard your future health, or improve your current health…
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Better breathing enhances sports performance
I recently witnessed a remarkable demonstration. This amateur runner was going at full pelt on a running machine breathing calmly, and gently (pretty much
Sarah, a breathing educator, running with easy breathing and closed mouth.
invisibly) with her mouth closed. She was in full control of her breathing throughout, totally relaxed before during and after the exercise.
Don coaching the Oxyathlete method
It was a workshop lead by Don Gordon demonstrating part of the oxyathlete programme of Patrick Mckeown ; Elite athletes trained in Oxyathlete programmes have had increased performance of up to 2%, amateurs much more.
Background
At peak performance the majority of athletes that Don assessed (from elite, amateur or recreational) felt that their breathing holds them back, not their muscles.
Most athletes breathe badly; many have heath issues connected with bad breathing (asthma, allergies, anxiety, sleep problems)
Most have no breath training, don’t warm up lungs or diaphragm or/ have been coached to do deep breathing and/or rhythm breathing through the mouth, not the nose.
The breath training programme can deliver:
- Better oxygen delivery
- Faster speeds
- Better endurance
- Faster recovery
- More enjoyment
Incorrect breathing can:
- Constrict airways making it harder to breathe
- Constrict blood vessels reducing muscle oxygenation, speed and endurance
- Cause lactic acid build up and fatigue
- Increase free radicals/acidosis making injury/cramp/ pulled muscles more likely
- Reduce training days due to more ill health
How does it work? Optimal performance is a function of how we breathe; less breathing leads to more muscle oxygenation
Don demonstrating cycling posture of the future; straight back, free diaphragm
The first stage improves breathing at rest and is for everyone. The second stage is for all athletes when they have progressed in stage one; learning breath control during exercise with mainly nasal breathing.
The second stage involves special warm ups and cool downs while controlling the breath as well as interval training, all while breathing calmly and mostly through the nose. The controlled way this is done strikes me as safer than the interval training where the breathing is out of control and takes a long time to come back down to normal after the training session.
Then for elite athletes the third stage simulates high altitude training via breath control (more in future blog posts).
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How hyperventilation harms: part 3 hyperventilation can unbalance the blood gases and reduce transfer of oxygen from the blood to the organs and tissues that need it.
Breathing air into and out of the lungs supplies us with oxygen and gets rid of excess CO2. Air entering the lungs is oxygen rich, and the blood supply, as it passes through the lungs, picks up oxygen easily and carries it round the body attached to haemoglobin molecules in red blood cells. You can buy quiet cheaply a handy device (a pulse oximeter) that you stick your finger into and it can actually measure how much oxygen is carried on your haemoglobin (I don’t suggest you rush to buy one, results can be hard to interpret, see below). Normal oxygen saturation levels (sats) are usually considered to be between 96- 99%; people with lung damage might struggle to achieve that. However, a plentiful supply of oxygen circulating in your bloodstream and a 99% oxygen reading is not always an indicator that your body and its organs are well oxygenated. There is another step to consider; the blood has to carry the oxygen round the body to where it is needed most and that will be where there is low oxygen – for example in an actively contracting muscle -and then the blood has to release the oxygen from the haemoglobin so it can be utilised where it is needed. An active muscle will be rapidly metabolising and will require more oxygen, and will produce more CO2. The higher local levels of CO2 and the lowered local pH are important triggers that help to release oxygen from the haemoglobin so it can be used exactly where needed. This is known as the Bohr Effect and has been described in physiology text books for a century.
The more you breathe, the less oxygen you get.
Unfortunately, hyperventilation (breathing more than you need for the activity you are doing) can cause loss of too much CO2 from the body (hypocapnia). There is only a tiny amount in the air we breathe, so to maintain a healthy level in our bodies, we have to retain and accumulate CO2 by breathing correctly. Breathe too much and CO2 levels can become too low, and alter the whole body biochemisty.
When CO2 levels are too low, oxygen is not released efficiently from the blood to where it is needed. (Picture by V Lunn Rockcliffe)
One thing that can happen with lowered CO2 is that oxygen is no longer efficiently released from the haemoglobin in circulating red blood cells in the blood supply. Instead of the oxygen being released in the body where there is high metabolic activity, and high CO2, the oxygen sticks tightly to the haemoglobin and continues to circulate in the bloodstream, where it really can’t do any good. It is easy to see that aching muscles and brain fog and a host of symptoms could be related to low oxygenation caused by hyperventilation and unbalanced blood gases. It is very common for people to say “breathe deeply” “take big breaths for more oxygen”. In fact it is easy to get enough oxygen, air is about 21% oxygen and the cells of the body only need about 2%. Much more likely deep breathing will flush out too much CO2, air only has 0.04% and the cells of the body need about 6%. So by trying to breathe deeply for more oxygen, you can do the opposite and starve your body of oxygen. The more you breathe, the less oxygen you get.
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How hyperventilation harms: part 2 hyperventilation can narrow the blood vessels and reduce blood and oxygen supply.
Chronic hyperventilation unbalances the blood gases; one of the important changes can be low body carbon dioxide (CO2) or hypocapnia. CO2 is not just a waste gas; you need a certain amount for healthy body function. 
Part 1 focused on low CO2 and tightening of the airways and how hyperventilation, or over-breathing, can cause respiratory issues.
In part 2 we turn the spotlight on blood vessels and circulation: hyperventilation-induced hypocapnia can lead not only to the airways narrowing but also constricts certain blood vessels and affects the blood supply to many organs, leading to diverse symptoms from IBS to brain fog to cold hands and palpitations (fuller list of hyperventilation related symptoms). One example of reduced blood flow/low O2 supply is shown in the figure of a brain scanned before and after just one minute of voluntary hyperventilation. The reduction in cerebral blood flow can lead in turn to poor oxygen (O2) supply to the brain, and may contribute to brain fog, poor concentration and anxiety. Continue Reading
