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Be aware of allergies as the root cause of many problems including fatigue

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Blog written by Sarah Myhill, author of Diagnosis and Treatment of Chronic Fatigue Syndrome, Ecological Medicine, and The PK Cookbook

Allergy is the inflammation which results from response to substances (called antigens) from outside the body. Some of these present no threat to the body. Examples include pollen, house dust mites, animal dander and foods. Some antigens do pose a threat in high doses, such as metals (lead, mercury, arsenic, nickel), toxic chemicals (pesticides, solvents) or electromagnetic radiation (wi-fi, mobile phones, cordless phones etc).

Allergy has been known about for centuries. For example, 5-10 per cent of people with asthma are also allergic to sulphites. Pliny the Elder wrote of this when he reported the case of an asthmatic patient (rare for his times) who died from a bronchospasm in 79 AD after the eruption of Mount Vesuvius. The patient had lived a ‘normal life’ but for this ‘one incident’.

Allergy is the great mimic and can produce almost any symptom. Furthermore, one can be allergic to anything under the sun, including the sun! Allergy is also common – at least 30 per cent of the population are allergic to some foods. However, by the time allergy has produced fatigue (the major focus of my work as a doctor) it has usually caused other problems beforehand. Suspect an allergy problem if any, or a combination, of the following are present:

* The onset of fatigue is pre-dated by, and/or there is a long history of:

* asthma, sinusitis, rhinitis, eczema or urticaria

* irritable bowel syndrome with wind, gas, bloating, abdominal pain, alternating constipation and diarrhoea

* migraine or headaches

* joint (arthritis) and muscle pain

* mood swings, depression, anxiety, PMT

* almost any unexplained, recurring, episodic symptom.

  • Childhood problems – This would include being a sickly child with recurrent ‘infections’, such as tonsillitis (actually probably allergy). Indeed, a colleague who is a consultant paediatrician considers it medical negligence to surgically remove tonsils without first doing a dairy-free diet. Rhinitis, sinusitis, catarrh and colic are typical dairy allergy symptoms.
  • Symptoms change with time – Often the allergen is the same, but the symptom changes through life. Allergy to dairy products typically starts with colic and projectile vomiting as a baby, followed by toddler diarrhoea, catarrh and glue ear, recurrent infections (tonsillitis, croup, middle ear infections) and ‘growing pains’. Teenagers develop headaches, depression, irritable bowel syndrome, PMT and asthma. In adult life, muscle, tendon and joint pain (arthritis). Any of the above may be accompanied by fatigue.
  • There is a positive family history – I have yet to find a patient who is dairy allergic who does not have a first-degree relative (parent, sibling, child) who also has symptoms suggestive of allergy to dairy products. Allergy to gluten grains also runs in families.
  • There is a tendency to go for a particular food – One of the interesting aspects of allergy is that sufferers often crave the very food to which they are allergic. This was illustrated by one patient who told me that when he died he wished to take a cow to heaven with him. It was dairy which was his main problem! If wheat appears with every meal, then allergy to such is likely.
  • There are symptoms of fermenting gut – Microbes from the gut are minuscule and easily spill over into the bloodstream. This is called ‘bacterial translocation’. These bacteria do not cause septicaemia (blood poisoning), but they may cause allergy reactions at distal sites. I suspect many clinical pictures can be explained by this, including irritable bladder, interstitial cystitis, intrinsic asthma, chronic urticaria, chronic venous ulcers, polymyalgia rheumatica and arthritis (osteoarthritis, rheumatoid arthritis, ankylosing spondylitis and so on).

How to identify your personal food allergies

I never do tests for food allergy because they are unreliable. False negatives are common – so, for example, many people who are intolerant of gluten will test negative for coeliac disease. Often, when the test is negative, they are told by their doctor that it is safe to eat that food – not so! There are many tests for food allergy on the market, but again I find positive results can be misleading, not least because the patient believes absolutely in the accuracy of tests and ends up avoiding foods unnecessarily or eating foods which are causing them symptoms.

The only reliable way to diagnose food allergy is by an elimination diet. The key is to cut out those foods that one is consuming daily. The reason that reactions may be prolonged or delayed is that daily consumption masks the link between exposure and symptom. Western diets include daily consumption of grains, dairy products and often yeast. If in addition one is eating other foods, such as potato, soya or tomato, or drinking regular tea, coffee or whatever on a daily basis then this too should be excluded. One should stay on this diet for at least one month before reintroducing foods to the diet – this should be done cautiously since reactions can be severe. Dr John Mansfield developed a practical, easy-to-follow elimination diet that is described in his last book, Six Secrets of Successful Weight Loss.

The Stone-Age or Paleo diet is a ‘best guess’ diet and a useful starting place, hence my recommendation of the PK (Paleo-Ketogenic) diet as explained in our book Paleo-Ketogenic: the Why and the How. If it transpires that there are multiple allergies, then these days I do not put people on a more restricted diet – that is because some people get completely stuck on two or three foods and are unable to bring in new foods because of the above severe reactions. Instead, I put in place the interventions I recommend for a general approach to inflammation together with specific desensitisation techniques to switch off allergy (see our book Ecological Medicine).

Increasingly I am finding that one does not have to be perfect to reduce allergy and allergy symptoms. Simply reducing the total load is helpful – attention to the general approach is as important as specific desensitisation. However, the key steps are:

  • The PK diet
  • Extinguishing the inflammatory fire with my Groundhog Chronic regime (see any of our books) including antioxidants, especially vitamin C
  • Identifying possible causes, not forgetting micro-organims in the upper gut that should not be there, and eliminating or avoiding them
  • Detoxing to reduce the factors that cause inflammation
  • Reprogramming the immune system with probiotics, micro-immunotherapy, enzyme potentiated desensitisation (EPD) and neutralisation – all explained in detail in Ecological Medicine.
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Kindness within the Community

As it is the season for giving, caring and community, we want to celebrate all the kind things our wonderful authors do, not just at Christmas, but all year round. In our latest blog post, a selection of our authors tell us about the incredible organisations they work with to encourage you to spread kindness this Christmas.

Sara Challice – Author of ‘Who Cares?’

Whilst I cared for my husband, I found great support in the community from local charities offering a variety of services – for both of us.

One charity, INS (Integrated Neurological Services), based in Twickenham, not only gave my husband, Neal, one-to-one physiotherapy, which was a Godsend due to his waning mobility and falls, but they supported me as a carer. I realised how vital local charities were and within six months I had become a trustee on their board – offering my graphic design skills, along with giving a carer’s insight to improve services.

It didn’t stop there. The charity continued to give to me in return, as I gave to it. I learned many things, not just about the charity, but of supporting those with neurological conditions.

During this time, I joined their Mind Body Spirit group, enjoying the meditations and learning of books to empower and improve health and wellbeing. Five years on, I now take this group myself, having become a mindfulness instructor. There is always a great turnout to this supportive and nurturing group, discovering ways to help yourself, even if you have a neurological condition, such as Parkinson’s, Multiple Sclerosis, stroke, or if you are a carer.

As with Christmas time – it is in the giving that we receive – and similarly, after I received from this wonderful charity, I have been giving to it, and still continue to reap the benefits. Kindness is truly all-encompassing.

 

Dr Eugene Kongnyuy – Author of ‘No Pills, No Needles’

The United Nations Population Fund (UNFPA) is the lead UN agency for sexual and reproductive health and rights. In the past 12 months, my work with UNFPA involved supporting fragile health systems in Mali and the Democratic Republic of Congo (DRC) to enhance access to contraceptives, skilled birth delivery and assistance to survivors of gender-based violence.

File:UNFPA logo.svg - Wikimedia CommonsBoth countries are affected by humanitarian crisis and the health systems are very fragile and weak. Due to the high level of insecurity caused by non-state armed groups, transporting contraceptives, medicines, medical supplies and equipment to reach the last mile is a major challenge. The weak health systems were equally hit by the Covid-19 pandemic, epidemics (including Ebola in the DRC) and natural disasters (including the Nyiragongo volcanic eruption in the DRC).

Despite these challenges, my colleagues and I successfully reached millions of women with contraceptives in both countries. We also supported in-country contraceptive logistics (warehousing, distribution and inventory management) and trained healthcare providers on contraceptive counselling and provision.

We also renovated and equipped maternities and where no health maternities existed, we installed prefabricated maternities to enhance access to skilled birth attendance. We recruited midwives where there were no midwives to ensure that each maternity provides skilled birth delivery. We equally supported midwifery training schools by updating their training curricula to meet international standards, trained midwifery tutors and provided training equipment to midwifery schools. While obstetric fistula has virtually been eliminated in developed countries, thousands of women and girls develop fistula in Africa due to lack of skilled assistance at birth. In both countries, we supported obstetric fistula repair by providing surgical repair kits and training doctors to repair fistula.

Due to the humanitarian crisis, gender-based violence is a big problem in both countries and is sometimes used as a weapon of war. The violence takes several forms including sexual, physical, emotional, economical, domestic etc. Our job was to provide assistance to survivors of violence and to ensure safeguarding for women and girls affected by crisis. We set up one-stop centres in hospitals to provide comprehensive services for survivors – medical, psychosocial, judiciary, police and socioeconomic reintegration. The one-stop centres ensure that survivors do not need to be referred elsewhere as they receive all services including access to the police and a lawyer in a single centre.

While responding to the immediate humanitarian needs, my work also involved working closely with the Government to build national capacity and systems including policies so that the Government can eventually take over – we recognize that it’s the primary responsibility of Governments to provide the basic social services and to respect, protect and fulfil the human rights of its citizens.

 

Sarah Russell – Author of ‘The Bowel Cancer Recovery Toolkit’

One of the things I do in terms of community and ‘giving back’ is the work I’ve been doing with my local hospice. I’ve volunteered with Hospice in the Weald for 4 years as an exercise specialist and work with the physio and OT team. I run exercise groups for palliative patients under hospice care and since the beginning of the pandemic I’ve been doing them on zoom. Which has worked brilliantly as people have been at home and needing to shield and keep themselves safe, but we’ve still been able to keep them active and mobile.

People often wonder how exercise can help palliative patients, and if it’s really safe.. but the benefits are amazing. It helps people to stay strong, mobile and independent for longer, in some cases extending life. But the most important aspect is that people feel they have a little bit of control over their lives, they are doing something to help themselves, even when they are really unwell. For that short time when doing their exercise class they don’t feel like a patient, and it gives them positivity and encouragement and a little bit of normality. It really is wonderful that we can give that to people through the power of exercise, even at the end of their lives.

 

Sandra Hood – Author of ‘Feeding Your Vegan Child’

In 2020 I took on Pixie who was an ex-street dog from Macedonia. Due to her nervousness and Houdini abilities, Pixie had had a number of homes in the UK before finding her way to Love Underdogs.  Love Underdogs is a charity that does amazing work with stray unwanted street dogs, mainly from Romania, and took Pixie on to find her a home.

I had a dog flap fitted and the garden was, I believed, escape proof. After having Pixie for a couple of weeks, I had to go into work early in the morning. My phone was switched off at work but when I checked it at lunch time there were numerous messages. Pixie had been found, some 11 miles away. She was eventually trapped in a driveway.  The police took her in, got details from her ID tag and contacted Love Underdogs and me.

When I collected Pixie she was absolutely exhausted and very pleased to see me. It was only the next day that a neighbour told me he had seen her jump out of the upstairs bedroom window to chase my car. Someone submitted the story to the paper and she made page 3!

Love Underdogs needs to be recognised for its wonderful work.

I would also like to mention Goole RSPCA Cats which I support. My sister and niece are volunteers for the charity and they do amazing work with rescuing cats that can be in terrible states. For example, my niece Georgina fostered Marigold in December last year, a cat that was found in a field, severely underweight, one-eyed and with a distinctive crinkled ear. Most likely abandoned due to her pitiful state, she wasn’t expected to make Christmas last year as she was so ill.  No one has been interested in giving Marigold a permanent home, so now Georgina is going to adopt her.

 

Dr Raymond Perrin – Author of The Perrin Technique 2nd Edition and The Concise Perrin Technique

This is the story of how the research that led to my doctorate and then to my book The Perrin Technique came about – with a little help from above…

Medical research comes with a hefty price tag even for relatively small projects, so when I embarked on my research project at the University of Salford in the early 1990s, I needed to establish the FORME charitable trust in order to attract other trusts to donate the £100,000 needed to test if my osteopathic techniques could help ME/CFS. We appealed widely through the media but to no avail. We had a few thousand pounds – enough to buy a computer or two but not to run a controlled clinical trial involving at least 60 participants. So, the trustees of the charity decided to hold an emergency meeting to discuss closing down the charity and donating our meagre funds to a national ME Fund for Osteopathic Research into ME - FORME charity, ending my dream of undertaking this research.

The meeting was scheduled for a Thursday evening but just two days before I received a phone call that was to change everything. It was from a Mr Barclay who said he had read about our appeal and wanted to know if he and his brother could meet me at his hotel. When I inquired where his hotel was he replied Monte Carlo! Two days later I was sitting with Frederick and David Barclay in the Mirabeau in Monaco, one of the many hotels that they owned around the world. They wrote a cheque then and there for £50,000 and said the rest would be sent in a few months. An hour later I was heading for my flight home at the same time as the trustees were meeting to disband the charity – a meeting I interrupted to tell them of the Barclays’ generosity to the surprise of all.

Thirty years on, with a few more research projects completed, all funded by charity and supported by volunteers, we have provided much evidence to support the importance of lymphatic drainage in ME/CFS and we are now just about to embark on a new study at the University of Manchester, together with the NHS, into Long Covid, again funded by generous organisations from the public. I shall never forget the generosity of all concerned without which this research would never have begun.

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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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The Perrin Technique Second Edition – Coming Soon…

We have some exciting news to share about The Perrin Technique. This was first published in 2007 and since then has sold over 11k copies, helping very many people with CFS/ME (including the HHB publisher’s son) back to health. Author Dr Raymond Perrin has been working on a new edition for some years but had found clinical commitments plus invitations to lecture and train abroad worked against his completing this major work. Now with lockdown he has been able to finalise the second edition of his book and this will be available towards the end of the year.

It is greatly expanded and now includes all the latest research that sheds light on the importance of the lymphatic system and lymphatic drainage in health. While in 2007, the connection between cranial lymphatic blockage and chronic fatigue was a ‘hypothesis’ that was supported only by the results of treatment with the Perrin Technique; now the science exists to transform hypothesis into knowledge and to explain the diverse symptoms of CFS/ME.

Because the second edition, with the new sub-title  ‘How to diagnose and treat chronic fatigue syndrome/ME and fibromyalgia via the lymphatic drainage of the brain’, is greatly expanded (it will be around 500 pages) we will have to increase the price considerably but will ensure there is a more reasonably priced eBook as an alternative.

We are announcing the second edition now because copies of the first edition have run out and we can no longer offer it for sale. You may be able to find it online from some vendors and the author also has some copies remaining and can be contacted via info@theperrinclinic.com for anyone who can’t wait for the second edition – and the eBook continues to be available here. 

If you wish to leave an expression of interest with Hammersmith Health Books regarding a pre-publication special offer, please contact us via info@hammersmithbooks.co.uk and you can pre-order from Amazon and other booksellers. Please bear with us while we complete work on this large, complex and highly illustrated book. We can’t wait… but we have to get it right!

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Thunder Dragon Half Marathon in Bhutan: A recap by Max Tuck

Finish line Thunder Dragon

This post was written by Max Tuck, author of The Fatigue Solution: my astonishing journey from medical write-off to mountains and marathons, published by Hammersmith Health Books. 

“It’s all perfectly runnable.”… or so I was told in the pre-race briefing. And I’m sure it would have been – right up until the time that the Indian tectonic plate smashed into the Eurasian plate 50 million years ago and created the Himalayas.

I consider myself to be a reasonable runner, and I’d put in a hard winter of training in the lead-up to this race, the Thunder Dragon in Bhutan. A week earlier I was competing in a half marathon on the Great Wall of China – 5126 steps into history, and I felt every one of them. I somehow came second in my age category, despite it taking me nearly an hour longer than pretty much every other half marathon I have run, with the 30 degree temperature sapping my energy like you could only imagine.

But the Thunder Dragon – this was something entirely different. At 11 miles, my pace had slowed to a crawl. Perfectly runnable? It might have been for the organiser, a former London Marathon winner in a time of 2 hours 9 minutes. But for me, a recreational runner who 28 years ago had been deemed incurable by the medical profession – this wasn’t running, it was survival. I was at 2500 metres, feeling sick, dizzy and gasping for breath. I poured water over my head so that my mouth could focus solely on the act of breathing. It didn’t help.

My pace slowed to a walk. I faced a long uphill on a stony track at 8200 feet. Hard enough at lower altitudes, the sharp stones particularly cruel for a barefoot runner like me, whose only acclimatisation had been a hike to the famous Tiger’s Nest monastery at 3600 metres two days previously.

Yet somehow I finished, even managing to run the last mile (mainly, I’m sure, because it was downhill). It was the hardest half marathon I had ever done, reflected in my very slow time.

A major surprise came later that day at the prize-giving ceremony. An American runner was announced as the winner of the over 40 age category. “That can’t be right, Max,” she said as she went up to collect her prize. “You were about half an hour ahead of me!”

I smiled and congratulated her. Immediately afterwards, I was announced as the winner of the over 50s age group. We were both amazed – I because I had won my age category in that savage race, and she because she thought I was about 42, not 55. This anti-ageing lifestyle certainly has its benefits!

Max Tuck was in China and Bhutan raising money for Dogs Trust.

See www.justgiving.com/fundraising/maxagainstthewall to donate.

Max’s latest book The Fatigue Solution: my astonishing journey from medical write-off to mountains and marathons, is published by Hammersmith Health Books.

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The Fatigue Solution: From Medical Write-Off to Mountains and Marathons

The Fatigue Solution by Max Tuck

I used to like filling in forms. What could be more satisfying than taking a blank document and experiencing the joy of completing it to someone else’s exacting standards? Does this make me odd? Maybe you’re just not with me on this one. And today, I’ll confess, I’m not feeling the love either. There are so many other things I’d rather be doing on a Saturday afternoon.

The form in question is a visa application to enter the People’s Republic of China. If someone had told me 28 years ago that in May 2018 I would be embarking on my biggest running challenge in years, involving a half marathon on the Great Wall of China, followed by a race of the same distance at altitude in Bhutan in the Himalayas, I would have replied that they were clearly wrong, because I wasn’t expected to live that long. Never mind not only still being alive, but to be taking on that kind of physical challenge? Definitely a case of mistaken identity.

The reason for my disbelief would be simple. In 1990 my body was wasted and exhausted. As a vet, if I’d had a patient with as few white blood cells as I had, I would be looking down a microscope at a blood film to check, because the machine must have got it wrong. My desperately low white blood cell count was mirrored by my startlingly low bodyweight and complete muscle wastage. I was so weak that even getting into my car to drive to work involved significant effort. As for the idea of running races for charity in challenging conditions – forget it.

But here I am. In my book The Fatigue Solution, I explain how I went from medical write-off to mountains and marathons; how I rejected exhaustion and rediscovered life. It sounds like a dramatic turnaround. It certainly was.

What had happened to me? I was overworking myself, never taking breaks, cramming far too much in, never saying no, refusing to give up… and ultimately I lost my most precious possession. No, not my house, my job or my car – my health. You never fully appreciate what you have until you lose it. And at the ripe old age of 27, I lost that completely. It disappeared in a fog of exhaustion, muscle degeneration and viral attack. Hello Epstein-Barr virus and chronic fatigue. Goodbye life.

Or… so the doctors believed, based upon other patients similarly affected. Not me. I’m tough. I’m stubborn. I take huge delight in proving people wrong. As you’ll read in The Fatigue Solution, I never give up. Tell me I’m incurable? I’ll show you. Don’t tell me I can’t.

And prove them wrong I did. Not only am I still alive at the age of 55, I’m thriving. I’m fitter, stronger and have more energy than most 25 year olds (or so my personal trainer tells me anyway). My muscles all came back, and then some. Drastic turnaround? You bet. Was it easy? No. Did it take hard work, dedication and determination? Of course it did. Was it worth it? Hell yes!

The Fatigue Solution by Max Tuck

How, you might wonder, did I do it? After all, if you’re in a similar exhausted situation, running to the next lamp-post might seem impossible. Step by step, that’s how. As I explain throughout The Fatigue Solution, by upgrading every aspect of my lifestyle. By researching and implementing all the factors that are known to make a difference. Applying the information and using it to fuel my recovery, consistently, every day. By believing that I could, and that I was worth it. I did it for me. Armed with the right knowledge and a will to succeed, you can do it too.

There’s now only one thing standing between me and my tough far-eastern running challenge – that wretched visa application form.

Max Tuck’s book The Fatigue Solution: my astonishing journey from medical write-off to mountains and marathons is available in print and e-pub versions from Hammersmith Health Books.

For more information visit www.thefatiguesolution.co.uk

To support Max in her charity fundraising, visit www.maxagainstthewall.com

 

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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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Books on Prescription: Reading Well for Long Term Conditions

We are delighted to announce that Fighting Fatigue and Irritable Bowel Syndrome: Navigating Your Way to Recovery have been placed on the Reading Well scheme for long term conditions.

If the pen is mightier than the sword, perhaps the book is mightier than the drug.

These stirring words from Professor Martin Marshall at the 2017 Reading Well launch really summed up the miraculous effect that books have on us.

Bibliotherapy –  the use of books and reading to facilitate management of and recovery from illness – is not a new concept, but it has found increased recognition in recent years thanks in part to the Reading Well scheme. Continue reading Books on Prescription: Reading Well for Long Term Conditions

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Invisible Illness: recognising the symptoms of Pernicious Anaemia

Invisible Illness: recognising the symptoms of Pernicious Anaemia

Pernicious Anaemia (PA) is an invisible illness caused by deficiency in vitamin B12 owing to problems absorbing it from food.

Everyone is different and sufferers of pernicious anaemia will experience the symptoms of the condition to varying degrees. Some patients will have all of the symptoms listed below while others will recognise only a few. This list has been compiled over a number of years and shows what a wide range of symptoms there can be. There are two problems with this wide range. First, many of the symptoms listed below are associated with other medical conditions, which often leads to confusion with other invisible illness and misdiagnosis. Secondly, because there are so many symptoms associated with pernicious anaemia, it makes it difficult for doctors to identify the symptoms specific to the disease – thus making an early diagnosis even less certain.

Common general symptoms of Pernicious Anaemia

  • Shortness of breath – ‘the sighs’
  • Extreme fatigue
  • Brain fog
  • Poor concentration
  • Short-term memory loss
  • Confusion (‘handbag in the fridge syndrome’)
  • Nominal aphasia (forgetting the names of objects)
  • Unaccountable and sudden bouts of diarrhoea, often following a spell of constipation
  • Clumsiness/lack of coordination
  • Brittle, flaky nails; dry skin anywhere on body
  • Mood swings, ‘tear jags’, heightened emotions
  • Sleep disturbance
  • Even though patient is exhausted, is unable to sleep
  • Waking up still tired, even after many hours’ sleep

Neurological symptoms of Pernicious Anaemia

  • Balance problems
  • Dizzy/faint
  • ‘Shoulder bumps’ – frequently bumping into or falling against walls
  • General unsteadiness, especially when showering and dressing
  • Inability to stand up with eyes closed or in the dark
  • Vertigo – inability to cope with heights, linked to the need for a visual reference as compensation for damage to the brain’s balance mechanism
  • Numbness/tingling – especially in hands, arms, legs, feet
  • Burning sensation in legs and feet – Grierson-Gopalan syndrome
  • Tinnitus – ringing/screeching/howling in the ear or ear
  • Neuropathic pain/fibromyalgia – often on only one side of the body
  • Irritability/frustration/impatience; desire for isolation, quiet and peace; aversion to bright lights and crowded spaces

Skin problems associated with Pernicious Anaemia

  • Hair loss – can range from moderate to sever; premature greying of hair
  • Psoriasis/eczema/acne
  • Rosacea – reddening of the skin around the nose and cheeks
  • Vitiligo – white patches that develop on the skin

Other medical problems associated with Pernicious Anaemia

  • Poor digestion
  • Arrhythmia – irregular, fast or slow heartbeat

Autoimmune conditions associated with Pernicious Anaemia

  • Rheumatoid arthritis
  • Hypo- or hyper-thyroidism – almost exclusively among females
  • Coeliac disease – sensitivity to wheat and/or wheat products
  • Myasthenia gravis – weak muscles leading to problems swallowing, chewing and opening eye(s)
  • Psoriatic arthritis

Vitamin B12 deficiency can be detected with a blood test, and if this deficiency is then determined not to be caused by diet it may be a clue that Pernicious Anaemia is the underlying invisible illness.

To learn more about Pernicious Anaemia diagnosis and treatment read What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper, founder of The Pernicious Anaemia Society.

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CFS/ME – Vicious circles and multitasking

As co-admin of Dr Myhill’s Facebook groups, I often see members asking what the single most important intervention in a person’s recovery from CFS/ME has been. I totally understand the reasoning behind this question – having limited funds where should attention be directed first to achieve the best results? Where does one find the most bang for one’s buck!

Dr Myhill instinctively takes this approach too, preferring her patients to do the ‘easy’ cheaper things first because these interventions are often enough on their own to elicit recovery. So, correcting sleep, doing the right diet and taking nutritional supplements are right at the top of the list. This is laid out in her CFS/ME checklist.

However, for some this is not enough and it is then that we must face the complexity of our intricate biological system with its many feedback loops and synergistic effects.

I am a mathematician and so the assumption is that I like linear arguments progressing from one irrefutable logic step to another, and so on, until we arrive at the ‘answer’! In my case, nothing could be further from the truth. For example, when first introduced to James Watt’s centrifugal governor, I was fascinated. This governor is essentially a continuous feedback system that controls the rate of a steam engine so as to maintain a near-constant speed, irrespective of the load or fuel-supply conditions. The constant speed of the engine achieved in this way is the mechanical equivalent of a well-functioning biological system. I enjoyed learning about these feedback systems but never had a chance to study the many biological examples because aged 12, I chose Latin and Ancient Greek over Biology for my school options.

However, life, and more specifically CFS, has forced me to become more acquainted with these biological systems because I am one of those for whom the ‘easy’ cheaper things have not fully worked.

As laid out in much more detail in Dr Myhill’s upcoming and fully revised book, Diagnosing and Treating CFS/ME – It’s mitochondria, not hypochondria and in Sustainable Medicine, there are many vicious circles in CFS/ME and these make the recovery process so much harder.

For example, if mitochondria go slow then the heart, being a muscle and so dependent on good mitochondrial function, will also go slow. The heart delivers fuel and oxygen to all cells in the body and so, if fuel and oxygen delivery is impaired then this too further impairs mitochondrial function. This can be seen below:

cfs-myhill-mitonchondria-vicious-circle

As further illustration, magnesium is of central importance for mitochondria. Having low levels of magnesium inside cells and mitochondria is a symptom of CFS but also a cause of it. This is because 40 per cent of resting energy simply powers the ion pumps for sodium/ potassium (Na/K) and calcium/magnesium (Ca/Mg) across cell membranes. When energy supply is diminished, as in mitochondrial dysfunction, there is insufficient energy to fire these pumps, and so magnesium cannot be drawn into the cells for oxidative phosphorylation to work. If there is insufficient energy to drag magnesium into cells, then there is a further diminishing of energy delivery, because of the lack of magnesium, and hence we have another vicious circle.

But all is not lost! We have at least two things in our favour – we now understand these vicious circles, and so can ‘break’ them, and many of the nutritional interventions we use can ‘multi-task’.

So, considering the two examples above, we can ‘break’ those vicious circles and so restore mitochondrial function by using Dr Myhill’s standard mitochondrial package of supplements, and by supplementing with magnesium we can further support the ion pump:

  • Coenzyme Q10 as ubiquinol – 200 milligrams
  • Vitamin B3 as niacinamide – 500-1500 milligrams – slow release
  • Acetyl-L-carnitine – 1-2 grams
  • D-ribose – up to15 grams
  • Vitamin B12 – 5 milligrams sublingually or ideally B12 by injection
  • Magnesium – ½ ml 50% magnesium sulphate, ideally, or 300mg orally

So, what of this multi-tasking then? Many interventions multi-task. High-dose vitamin B12 may be used to improve mitochondrial function, for detoxing via the methylation cycle, as an antioxidant and for its anti-inflammatory properties by damping down the pro-inflammatory fire of the NO/ON/OO cycle. This makes correcting multiple co-existent problems that much ‘easier’!

And then we have a ‘lovely’ example which I came to learn through both my own experience and also very many questions on Dr Myhill’s Facebook groups, essentially asking the same thing:

Why is it that when I have a sudden energy dip, I also feel weepy and emotionally fragile, weepy beyond what I would expect to feel?

Well, here is one way of looking at it – ATP is not only the energy molecule but also a neurotransmitter – to be precise, a co-transmitter. Other neurotransmitters, such as serotonin, dopamine, GABA and acetylcholine, will not work unless they are accompanied by a molecule of ATP. So, if ATP levels fall precipitously low, then one feels dreadfully fatigued [ATP as the energy molecule] and simultaneously one feels very low emotionally [ATP as co-transmitter]. To mitigate this ‘double whammy’ effect, I carry a bottle of water with D-Ribose dissolved in it and this works as a great ‘rescue remedy’ for when I experience these sudden ATP dips.

So, I suppose what I am saying is that CFS/ME sufferers should try the ‘easy’ things first but that if these don’t work out for you, then don’t despair. We know the circles that must be broken and we have some great helpers, like Vitamin B12 and D-Ribose, which can multi-task and solve more than one problem at once! Never ever give up!

Craig Robinson first met Sarah in 2001, as a patient for the treatment of his CFS, and since then they have developed a professional working relationship, where he helps with the maintenance of www.drmyhill.co.uk, the moderating of Dr Myhill’s Facebook groups and other ad hoc projects, as well as with the editing and writing of her books.

A fully revised and expanded 2nd Edition of Dr Myhill’s book Diagnosis and Treatment of Chronic Fatigue Syndrome: it’s mitochondria, not hypochondria will be published in January 2017.