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Tips for Sleeping Well from The Fatigue Book

sleep

The following is an extract from ‘The Fatigue Book’ by Lydia Rolley and looks at the importance of sleeping well in managing the effects of Chronic Fatigue Syndrome.

It would seem to make logical sense that, if you suffer from fatigue, at least you would beable to have a good night’s sleep, right? Well, as you have no doubt discovered by now, the fatigue does not play by the normal rules of life, and what your body is craving from a good night’s sleep is sadly often denied.

As humans, we spend approximately a third of our lives sleeping. That is quite a lot of time. Sleep is essential for our mental and physical wellbeing. Sleep contributes to the proper functioning of our body’s systems. Lack of sleep, therefore, has negative health consequences.

I have worked with many chronic fatigue sufferers who, although they sleep a lot, struggle to sleep well. From my experience, people either tend to over-think sleep issues, which can lead to increased anxiety about getting to sleep, or not to think enough about these issues,
which can lead to disordered sleep habits. Chronic fatigue sufferers who have sleep difficulties usually wake feeling unrefreshed. Some may not be waking until late morning or even into the afternoon. Often it is hard to get out of bed, as the body feels weighed down and heavy. The heavy feeling and sleepiness can continue throughout the day. Some people report feeling more alert for a few hours later on, often in the early evening. Almost a small window of hope, but this can be followed by difficulty switching off at night and not being able to get to sleep.

Changing your sleep pattern does not happen by chance. It does take a lot of patience, being intentional and very consistent. Concentrating on your sleep and developing healthy sleep hygiene habits together make the biggest difference to your overall health and ability to function and cope well. I have seen countless people transform their sleep habits and have witnessed the benefits. The change started when they chose to try something different.

Sleep difficulties can be complex and multi-faceted, but most can be solved. Ignoring sleep issues, and hoping they will go away, does not work. Trying to sleep for a few extra hours to fill the gap only tends to prolong the problems rather than solve them. When sleep is disordered, our bodies need to be retrained to know when it is time to sleep and when it is time to wake up.

What I have learnt over the years is that, even though some of these tips seem obvious, they almost need to be exaggerated, repeated and magnified in order to have an effect. Please keep that in mind as you start to put into practice the following tips, which will give you some useful starting points.

I have full confidence that you will benefit from healthier sleep habits.

Tip 21: Separate Day and Night Clearly

sleep

This is probably not your present reality and that is okay for now, but please keep this fact clearly in your mind as a goal for your future sleep pattern. The boundaries between day and night can get very blurred with disordered sleep. The more disordered your sleep becomes, the more unrefreshing will be your experience. Reintroducing clear boundaries will prevent further deconditioning.

This is the direction we are heading towards to regain a healthier sleep routine. For now, just be aware of your current day and night sleep routine by drawing a line on the chart below where you think your sleep pattern currently is.

sleep

In the weeks and months ahead, be aware of how your current line gradually changes position and consider what has contributed to that shift. If you are sleeping excessively in the daytime and want to start changing that habit, see Tip 23.

Keep a Reflective Sleep Diary

The reason for keeping a sleep diary is to understand your current sleep situation and give greater clarity to what may need to change. This sleep diary is more of a reflective diary rather than a scientific measurement of your sleep cycles (such as on a sleep app). A reflective diary can be more useful in empowering you to make some changes.

In your reflective sleep diary (see Appendix 2, page 276) consider the following questions:

  • What was I doing an hour before bedtime?
  • How was I feeling in the evening?
  • What time did I get into bed?
  • How long did it take me to fall asleep? Why? Any reasons?
  • Did I wake in the night? How often? Why? Any reasons?
  • What time did I wake up?
  • What time did I get up?
  • How did I feel?
  • How would I rate my night’s sleep out of 10? (10 being excellent.)

I would recommend only doing this for a week or two, no more than that. That is enough time to recognise any patterns of sleep and highlight any particular areas that need concentrating on.

Every few days, respond to the following statement:

sleep

 

Tip 23: Set an Alarm

This tip is not always popular but it is of the utmost importance. When you are exhausted and perhaps have no particular reason to get up, it may seem sensible to rest for longer, but this is counterproductive. Staying longer in bed does not help poor quality sleep. Sufferers frequently report feeling worse for going back to sleep. Seeking balance and retraining your body to learn a sleep-wake cycle goes hand-in-hand with managing your activities, pacing and rest.

sleep

I recommend that you try the following method to create an ordered sleep-wake cycle:

  • Decide what time you would like to wake and get up, for example 8.00 am.
  • Use a simple alarm clock with a silent tick.
  • Place the clock somewhere that requires you to move to switch it off.
  • Check your reflective sleep diary and set the alarm for the average weekly time you currently wake and get up – for example, it maybe 11.30am.
  • Set your alarm at this time for a week, so that you get used to waking up with the alarm.
  • Avoid going back to sleep – open the curtains, turn the light on, sit on the edge of the bed, put your pillows on the floor, etc.
  • The following week, set your alarm for 30 minutes earlier.
  • The following week, set your alarm for another 30 minutes earlier.
  • Do this consistently for a few weeks, until you are waking and getting up at your preferred time.

If the 30-minute chunks are not successful, try 15-minute chunks of time.

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The books that informed my diagnosis and treatment of CFS/ME

Blog post by Dr Sarah Myhill, author of several HHB works including ‘The Energy Equation’, ‘The Infection Game’, ‘Ecological Medicine’ and ‘Diagnosis and Treatment of CFS/ME’.

 

Medical practice is called such for good reasons – doctors do not know all the answers and are practising! The patients present daily with medical dilemmas and the good doctor interposes her/himself between the theory of science and the art of treatment. As the famous physician, Sir William Osler, put it: He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.

So, what books do I take to sea with me? I determine the worth of such by the extent to which a book impacts on my clinical practice. There are two common ways – the first is to supply the intellectual imperative to put in place the necessary changes. This is vital as lifestyle changes are difficult and if I cannot inspire my patients with good science then they will not change their ways. After that it is about the road map. For me, since the 1980s the great challenge has been the treatment of patients with chronic fatigue syndrome and ME. There was no doubt they were pathologically ill, but why? What were the mechanisms? Could the pathology be biochemical and so not ‘seen’ by pathologists? Could there be something wrong with energy generation within cells?

What doctors learn about mitochondria

Medical students learn about those cellular energy generators – namely, mitochondria – during the ‘theory’ years. I was one of them. I mugged up the subject the night before, courtesy of black coffee and chocolate biscuits, regurgitated those short term memories onto the exam paper next morning and forgot. The reason to forget was simply that mitochondria appeared to have no application to the ‘practical’ years which ensued.

Power, Sex, Suicide by Nick Lane | Waterstones

 

Professor Nick Lane’s book

How wrong was that?! It is now difficult to find a pathology in which mitochondria are not involved. Professor Nick Lane’s Power Sex Suicide: Mitochondria and the meaning of life detailed the what, why and how of the role of mitochondria in the natural world. They supply energy to all living organisms such that the difference between life and death is mitochondria. No energy means no life. Lane’s book reads like a detective thriller – a real page-turner which had me enthralled as so much pathology suddenly fell into place.

 

The Sinatra Solution

 

 

Dr Stephen Sinatra’s book

The Sinatra Solution: metabolic cardiology then provided the practical reality of how to treat mitochondrial pathology. Stephen Sinatra was a traditional cardiologist using the conventional tools of drugs, pacemakers and surgery to treat heart disease, but none of these tools addressed the underlying pathology which progressed unremittingly. Sinatra now works by identifying the underlying causes of heart disease, and starts by treating the mitochondrial lesions. In doing so he has reversed pathology and cured patients. Great news for patients, bad news for Big Pharma whose mantra is: ‘A patient cured is a customer lost.’ By applying the Sinatra Solution to my CFS patients, I started to reverse their pathology. I watched their symptoms melt away. I began to see patients really recover. Not just recover but go on to live well. The really good news is that I can now also tell my patients that their best years are ahead of them – once recovered by addressing the mitochondrial lesions they are further protected against not just heart disease but cancer and dementia.

 

Look after your mitochondria and they will look after you.

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Dr Raymond Perrin’s Voyage of Discovery

Blog post written by Dr Raymond Perrin, author of The Perrin Technique 2nd Edition and The Concise Perrin Technique.

 

The background to The Perrin Technique

In 1989 a cyclist came into my clinic complaining of back pain. He also told me that he had been suffering with myalgic encephalomyelitis (ME) for 7 years and had been out of cycling for all of that time. I explained to him that, as an osteopath, I could help his back problems but couldn’t do much for his ME/chronic fatigue syndrome (CFS), which in those days was also known by the terribly derogatory name of ‘yuppie flu’. We were trained to believe that ME was very much a psychological disorder and that, with tender loving care and more exercise and time out of the office, the young upwardly mobile professionals so often affected would return to their healthy former selves. How wrong we were!

With treatment to the cyclist’s postural problems, his back pain diminished but amazingly so too did his ME symptoms and within a few months he was totally symptom free and able to return to his beloved bicycle.

 

The Perrin Technique: The theory

After helping this patient, I embarked on over three decades of clinical research into ME/CFS, including a doctoral thesis into the cause and treatment of this disorder that continues to baffle most clinicians, scientists and patients. In the early days of my research, I came up with a theory that formed the basis of my PhD thesis and my first book, The Perrin Technique, published by Hammersmith Press in 2007; this theory was that ME/CFS was due to a physical disturbance of the lymphatic drainage of the brain and spinal cord. This, I hypothesised, led to a build-up of toxins within the central nervous system, leading  to a disturbed autonomic nervous system (the nerves that control automatic functions of the body such as blood flow, the heart and gut function).

At the time, my theory that this autonomic dysfunction caused a reversal of lymphatic flow from the brain and spine, leading to toxic overload of the brain, went completely against medical and scientific thinking, as according to all the main authorities there was no lymphatic drainage of the central nervous system to go wrong in the first place. It was recognised that we had the lymphatic system to take away larger molecules that could not drain directly into the blood, but this was deemed unnecessary in the brain as the there was a natural protection, known as the ‘blood-brain barrier’, that stops large particles entering the brain, and so blood vessels in the brain were thought to be sufficient to flush any small particles away. We know very differently now!

 

The Perrin Technique: The facts

Join me in my voyage of discovery in The Perrin Technique 2nd Edition in which I describe how scientific breakthroughs over the past 14 years have  finally caught up with my original theory; we now have irrefutable proof of the existence of the lymphatic drainage of the brain (AKA the ‘glymphatic system’) and masses of evidence showing how  this drainage can be disturbed by a combination of physical, emotional, immunological and/or environmental stressors, leading to ME/CFS and fibromyalgia (FMS), and how a reversal of neuro-lymphatic  drainage can lead to physical diagnostic signs. In my 2nd Edition I include many references to the supporting scientific papers and to my own published research.

The Perrin Technique 2nd Edition also explains why every patient with ME/CFS or FMS is different and detail over 100 symptoms with an explanation of why patients suffer from each of these, such as :

Hyperosmia (changed sensitivity to smell): This is a common symptom of ME/CFS and FMS. The olfactory pathway is one of the main neuro-lymphatic drainage points in the cranium. The increased neurotoxicity and/or inflammation in this region will result in irritation of olfactory nerves leading to a heightened sensitivity to smell in some patients, with others finding a lessening of their senses and in some a total loss of smell and taste (see anosmia).

In addition, I discuss many other conditions that can occur together with ME/CFS and FMS and consider other therapies that may be of benefit together with The Perrin Technique as part of the jigsaw-puzzle of recovery.

 

Two Perrin Technique books

With the publication of The Concise Perrin Technique this month (August 2021) there will be two up-to-date books describing how to reverse problems with neuro-lymphatic drainage using manual techniques. The core of both books is a comprehensive game plan for helping patients return to health plus a step-by-step guide for manual practitioners to carry out the required treatment. Both books also answer many practical frequently-asked questions such as: What are the dos and don’ts for patients with ME/CFS and FMS?

However, I am acutely aware that ME/CFS and FMS can badly affect the cognitive ability of sufferers and that many of my patients find reading and comprehension difficult or impossible tasks, especially when it comes to long texts. Consequently, I have written The Concise Perrin Technique as a short, more focused guide to the Perrin Technique aimed specifically at patients who simply want to know the key facts about ME/CFS and FMS, how to diagnose these conditions and how to treat the underlying problem, without using scientific and medical language and long explanations.

Both The Perrin Technique 2nd Edition and the new The Concise Perrin Technique show how successfully to beat ME/CFS, FMS and other similar, emerging conditions, including Long-COVID. Correcting neuro-lymphatic drainage may also help many other neurological disorders – further research is underway.

If you wish to comprehend the underlying science and gain an in depth understanding of issues related to ME/CFS and FMS, then The Perrin Technique 2nd Edition is waiting to be read; if you want just the basics of the Perrin Technique and how to put these into practice, then The Concise Perrin Technique is for you.

 

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The Return to Education: A Guide for the Student Recovering/Recovered from CFS/ME

When returning to school, college or university after suffering from chronic fatigue syndrome/ME the student should avoid both mental and physical over-exertion. On some days even the minimal mental or physical effort can be deleterious and the student has to learn to accommodate during what may be a long process of recovery.

With CFS/ME in school children much information can be found on The Tymes Trust website here.

With CFS/ME and fibromyalgia all cases are different, with students all requiring unique requirements which makes the education plan and management more difficult. The dysfunction in the hypothalamus and the disturbed autonomic nervous system affect different systems and parts of the body and mind. Often there is a problem in getting up in the morning to be in time for school or lectures due to a disturbed circadian rhythm.

The other problem with all patients is the waxing and waning nature of the illness and this has to be understood by educational establishments, with students sometimes having to take off days when their symptoms worsen even though they seemed pretty healthy. They may occasionally look healthy and attempt to fit in with the educational system and school/ university student life but are often in a much more serious state of health then they let observers believe.

Unlike some psychological illnesses, CFS/ME patients retain their motivation but struggle with post-exertion malaise. The student will often try their best to carry on but their symptoms worsen with continued attempts to over-exert themselves.

As the Tymes Trust says on their information page: ‘Most children and students with CFS/ME are able to make some progress academically if education is suitably modified. However, they may be unable to follow the usual timescales for Key Stages and examinations etc. Therefore, it is important for schools to plan for the long term.’

Home tuition and/or online lessons are often needed in severe cases, reducing the extra strain that any examinations will inevitably place on the student.

It is imperative that both in school and further/higher education the relevant teachers and lecturers know about the students health problems even if they are in the past, just so there is a level of understanding for not pushing too fast and empathy if the condition deteriorates.

Recovering patients need to pace themselves, even if they are virtually symptom free. The student requires as much extra time as possible in their course work and to be given regular rest breaks during any examinations with the maximum extension to the time period allowed when sitting for any examinations.

I always advise rest breaks and small snacks and water when they take their examinations to reduce the symptoms of dehydration and hypoglycaemia which are common in CFS/ME and FMS.

Patients well enough to live in student accommodation should try as much as possible to find the quietest and least stressful environment to live in and, even if completely recovered, should avoid too much alcohol and too many late night events etc, making sure that their fellow students understand that they are not just being party-poopers.

Other measures that usually help are the use of a rest/recovery room when needed plus the student should be given easy access to lessons or lectures such as parking spaces near to the college/university entrance, and use of elevators rather than having to traipse up and down many flights of stairs all day.

Blog post written by Raymond Perrin, author of The Perrin Technique. Discover more about the upcoming Second edition here. 

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CFS/ME: Are you sleeping too much?

CFS/ME: Are you sleeping too much

Difficulty with sleep is common for people with CFS/ME. Some people find they are sleeping too much, while others find they are not sleeping enough. If you experience problems with sleep there are several things you can do to help yourself.

There is no such thing as an ideal amount of sleep. For example, some people need 10 hours, while others only need five. An average night’s sleep is around eight hours. When the amount of sleep someone is getting is causing an increase in fatigue that is when it becomes a problem.

When people first have CFS/ME they often over sleep. People who have had CFS/ME for a longer period of time often go from over sleeping to not being able to sleep enough, despite high fatigue levels. Continue reading CFS/ME: Are you sleeping too much?

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Diagnosis and Treatment of Chronic Fatigue Syndrome at the BMA Medical Book Awards

We’re very proud to announce that Dr Sarah Myhill’s book Diagnosis and Treatment of Chronic Fatigue Syndrome was highly commended in the Popular Medicine category at the BMA Medical Book Awards 2015. The book has quickly become one of our best sellers and is helping Sarah’s groundbreaking chronic fatigue syndrome protocol reach thousands of people around the world who wouldn’t otherwise have the chance to learn the tests and treatment methods she’s worked so hard to develop. It was up against some pretty stiff competition in its category so it’s a real achievement to have been highly commended.

Dr Myhill (middle right) with her team at the BMA Medical Book Awards for her book on Chronic Fatigue Syndrome
Dr Myhill (centre right) with her team at the BMA Medical Book Awards

Sharing expert knowledge about areas of medicine and health that aren’t so well represented by the mainstream is our goal at Hammersmith Health Books, and Dr Myhill’s book is a perfect example. In it Dr Myhill explains the importance of mitochondria and their role in every aspect of our lives, showing how we fail if they fail. She shows how their activity can be measured and how her recently published research supports her programme for mitochondrial recovery spelt out here as the basis for recovery from CFS/ME.

Congratulations to Sarah and her team who helped produce the book and support the many hundreds of chronic fatigue syndrome patients who visit her clinic and countless more who seek her advice and help remotely.

Dr Myhill's book Diagnosis and Treatment of Chronic Fatigue Syndrome was highly commended at the BMA Book Awards 2015

If you’d like to learn more about Dr. Myhill’s work visit www.doctormyhill.co.uk or join the Facebook group to meet other CFS/ME patients and get inside info on the protocol.

Diagnosis and Treatment of Chronic Fatigue Syndrome is now on sale in paperback and ebook formats from £4.50