Book-View: Diagnosis and Treatment of CFS

Title: Diagnosis and Treatment of Chronic Fatigue Syndrome

Written by: Dr. Sarah Myhill

(Image from Amazon. Click here to view)

 

 

First off I need to clarify that I read the first edition of this book (shown above) however there is now a second edition which has a blue cover and includes ‘Myalgic Encephalitis’ in the title. All comments will be relating to that first edition as (astonishingly) I don’t know what changes and revisions have been made in the second.

The byline for this book is, ‘. . . It’s mitochondria, not hypochondria.’ This, with the title, pretty much tells you what the book is about: how to identify and treat cases of Chronic Fatigue Syndrome (CFS). The layout is:

  • Acknowledgements, message, introduction
  • Chapter 1: The clinical picture of CFS (symptoms and diagnosis including tests worth doing and those not)
  • Chapter 2: Mitochondria and CFS (what mitochondria are, how they work, how they go wrong and what that means)
  • Chapter 3: Treat the mitochondrial metabolic dyslexia
  • Chapter 4: Solid foundations for recovery and good health (rest and pacing, vitamins and minerals, sleep, diet, allergy, detoxification, the fermenting gut)
  • Chapter 5: Other important bits of the car to look after (avoiding viral infections, hormonal disturbances, oxygen supply, psychological aspects, exercise)
  • Chapter 6: Toxic and viral causes of CFS
  • Chapter 7: The practical details – where to start (the order of importance, possibility of getting worse, how long will recovery take)
  • Chapter 8: Catastrophe Theory and CFS
  • Resources, glossary, index

As you can see from this it seems to cover most of the issues people would be interested in: it outlines a theory for the cause of CFS, (that malfunctioning mitochondria are ultimately responsible) possible tests that will detect this, and a series of steps that will eventually result in your recovery. In other words it’s authoritative, positive, and offers definite instructions. And with a plausible sounding theory and some reasonable recommendations, it’s something I can see a lot of people wanting to read more of.

But–

These are theories, not proven methods. Plus, the tests and nutritional supplements recommended are sourced through Dr Myhill’s clinic, and I’m not sure they’re available elsewhere.

I must admit I felt uneasy before I’d finished the first chapter of this book, and that feeling grew as I read on. The trouble was that, as mentioned, none of this is proven even though there are statements like, “This test is nearly always abnormal in CFS sufferers.” (Chapter 1, pg 17) If this were true, wouldn’t someone else have noticed by now, given the number of studies underway? Researchers would surely jump on something that could give a halfway reliable test for CFS.

My conclusion: either the results aren’t so definitive or these tests are hideously expensive.

Then there’s the fact that several suggestions for treatment involve things already tested and found to have inconsistent results. Vitamin B12 injections, for example, or taking truckloads of vitamins and minerals. This book gives the impression that there’s no harm to be found in taking well over the RDA for various vitamins and doing so long term, however a documentary I watched the other day warned of the dangers of this very thing. Overdosing on some vitamins is simply wasteful, doing so with others can be potentially harmful.

Also, if you’ve already ‘laid your foundations’ by improving sleep and diet, and by implementing pacing, (all of which you can do for free using a bit of common sense) you’re probably going to start improving without the need for taking extra nutritional supplements.

Another thing about this book was how difficult I found reading it, and this wasn’t brain-fog related! It was because there’s a lot of science in there, so much so that after the first couple of doses I started skimming pages until it finished, hoping I wouldn’t miss too much. The chapters are very long too, and there is a fair amount of repetition. I also got very confused (and curious) at the mention of taking ‘hypnotics’. . . They turned out to be sleeping pills.

This may be more my personal opinion than an overview of the book – I try to be impartial but sometimes that isn’t so easy. I want to believe in a cure or at least a treatment for ME/CFS, but I’m not going to grab at vines growing golden thorns, and I feel a need to speak out when I see one.

I’m not saying that the theory is completely wrong – the idea of mitochondria malfunctioning sounds reasonable. It’s more the suggestions made for recovery that worry me. For example, apart from the vitamins and minerals already mentioned, I believe decent sleep, pacing and rest, and having a good diet are important factors in managing CFS, if not the most important. I’m just not convinced that how this book suggests achieving those things is the best way.

I don’t mean to criticise Dr Myhill, and I’m not saying she doesn’t help people. This is my opinion of this book, and maybe some of these issues have been addressed in the second edition.

Book-view: Fighting Fatigue

Title: Fighting Fatigue: a practical guide to managing the symptoms of CFS/ME

Edited by: Sue Pemberton & Catherine Berry

(Image from Amazon. Click here to view)

 

 

The authors of this book are various, their occupations including occupational therapist, physiotherapist, and nurse. The introduction reveals that the information is based on ME/CFS booklets developed over many years at the Leeds and West Yorkshire CFS/ME Service, and includes stories by sufferers. There is little to no information in this book about the medical side of the condition: it doesn’t go into the potential causes or treatments, and no symptoms are discussed beyond that of fatigue.

In the introduction it states that,

“. . . This book is designed to be a useful tool in your recovery. It gives straightforward and specific advice on managing different aspects of everyday life. . .”

There are eleven chapters:

  1. Managing your daily activity and energy
  2. Rest
  3. Sleep
  4. Diet
  5. Stress and relaxation
  6. Thoughts and feelings
  7. Memory and concentration
  8. Dealing with others
  9. Physical activity and exercise
  10. Relapse and setbacks
  11. Carers

Each chapter includes an introduction, information broken into manageable chunks, worksheets and activities to help implement their advice, and a ‘story’.

The advice given seems sensible and practical, and they way it’s given makes it reasonable to implement. The difficulty comes when you try to make the changes and stick to to them, because some of them involve a fair amount of commitment and– I want to say hard work. It’s hard work as in you have to be truthful with yourself, prepared to keep trying even if you get it a bit wrong at first, and committed enough to keep it up beyond the first weeks, months, years. . .

I think one of the best points about this book is that it encourages you to try, to not be too hard on yourself and to set achievable goals, while also reminding that a step back isn’t the end of the world. In other words it’s motivational without being too ‘everything’s sunshine and rainbows’ or giving false hope. It even mentions at one point that staying as you are would probably be easier, because making an improvement will involve commitment and hard work, and will at times be frustrating.

Although I have come across many of the ideas in one form or another over the years, (so it wasn’t especially useful for me) I can see it being extremely useful for others: it seems a good book for strategies that help you cope with fatigue, and may not only manage your symptoms but help you work to improve them.

Finally, I didn’t get a feeling of being preached at as you do in some medical/self-help books, and there was no jargon or complicated diagrams. Instead the general tone is of calm, easy friendliness – someone who’s had more experience than you offering a bit of advice. Many of the techniques are of the ‘simple in theory, hard in practice’ kind, but surely worth giving a go.

Healing Secrets of a Decadent Bath

At first thought, a bath of fifteen minutes or longer will seem ridiculous or impossibly indulgent to some people. Think a little longer. A proper bath can help a body to relax, ease pain, give some essential personal time, warm you up right down to the bones, and help you get to sleep. For practically no cost. In my view that’s a better result than any offered by bottles of pills, hours of various therapies, alternative remedies, or spa days.

Baths have become unfashionable or even bad in some people’s view because of the amount of water they use compared to a shower, but a bath offers some things a shower does not, and is in fact a completely different experience. Also, when you consider that you’ll be in it for fifteen minutes (or longer) the amount of water used isn’t so terrible. The longer you’re in there, the more use you’re getting out of it.

So what are the secrets to having a decadent, indulgent, therapeutic bathing experience? Attend the recipe below for some ideas.

Preparation:

  1. Make sure you will be completely undisturbed for at least fifteen minutes. This means no phones, husbands/partners/housemates/children, no TV, no  ipad. Also resist leaping out halfway through to see to any suddenly-remembered task.
  2. Make sure you have anything you need in the bathroom with you before you start running the water. E.g. if you’re using candles, make sure you have matches too.

Recipe:

  1. Turn on taps
  2. Add bubble bath or other desired bath product
  3. If using, place your book within reach of the bath, set up candles and turn off main light
  4. Test water isn’t freezing/boiling then get in (after undressing)
  5. Continue monitoring water temperature. If you’re very cold it may be necessary to slowly increase the amount of hot water as your body warms or you’ll finish with a lukewarm bath.
  6. When water is of sufficient depth (covering as much of you as possible) turn off the tapsbath-988502_640.jpg
  7. Stop active-thinking and settle in to unwind and enjoy. This means you need to stop worrying, planning, listing, thinking about what did(n’t) happen that day and what you’re going to do tomorrow. If it helps you could read, listen to quiet music, close your eyes and drift. . .

Hints, tips, and suggestions:

  • Remember you’ll be in the bath for a while and the water will cool during that time. You may want to make it a bit warm to begin with or add a little more hot water part way through.
  • If you don’t think you can stay in a bath for long without doing anything, then bring a book to read. I’d recommend an actual book rather than a reader (kindle etc) because then you don’t have to worry if you drop it – real books dry out and return more or less to normal!
  • Candles can be a soft alternative to the main electric light. You do need somewhere safe to put them though. This means a place where they won’t set fire to anything, get knocked over, and are out of the way for when you get in and out of the bath. Candlelight can make reading difficult, so you may have to sacrifice one for the other.
  • Consider using bubble bath, salts, or bath-bombs to scent the water as this can aid relaxation. Using different scents depending on your mood can be beneficial too. (Make sure to check the packaging for directions of use and safety warnings)
  • If you feel yourself falling asleep you should probably get out. Or at least wedge yourself so your head won’t go underwater.
  • Apparently it’s the cooling down after a warm bath that makes you sleepy, not the being warm part. So they say.
  • Be aware that hot baths can be dangerous. As far as I know the main danger comes from the sudden change of putting a cold body into hot water, and this can be mitigated by getting in the bath early and gradually increasing the temperature as you get used to it.
  • In the summer (or if you’re warm already) you can have a lukewarm/cold bath instead of a warm/hot one. This is down to personal preferences.

You may not want to do this every night even if you’re able to, but a decent bath offers many benefits that shouldn’t be ignored. See if you can stay in until your fingers and toes prune. Happy bathing!

Bedtime Stories

As a babies and young children my brothers and I were read a story most nights by our parents.Related image

As we got a bit older we had a cassette player that would tell us several stories whenever we wanted. Morris and Doris, James and the Giant Peach, Just So Stories, Johnny Tomorrow, Enid Blyton. . .

At different ages, each of us stopped.

When I was 20ish, I resurrected the tradition of the bedtime story. Now I would listen to Enid Blyton on CD, and there were newcomer’s too: Agatha Christie, MC Beaton. . . music sometimes. Why am I telling you this? Because in addition to being a slightly embarrassing confession (my topic of the day) it’s something I’ve discovered that can help me get to sleep when I’m having difficulties.

By listening to the story my mind stops thinking and making lists, I settle and calm, and I fall asleep. Not always more quickly, but at least I don’t feel the time dragging in the same way. Obviously it’s a bit annoying, keep drifting off in the middle of a story and loosing chunks, but you just have to find roughly where you were the following night and you can go on from there. It also doesn’t matter if you know the story (it can actually be a bonus if you do) because in this instance it’s a tool; a way to shut off your brain and get some rest at last.

This may seem ridiculous or impractical compared to many sleep-therapies, but it really does work for me. Maybe it could for you too. Plus, there are plenty of audio-books to choose from these days!

Symptom: Fatigue

Basic/general points of ME/CFS are covered on the page about me (See Introducing. . .) This post deals purely with the symptom of fatigue, an extreme and persistent exhaustion that is held to be one of the central symptoms of ME/CFS.

NHS: This fatigue is overwhelming and a different type of tiredness than previously experienced.

It can affect the sufferer both physically and mentally, making it difficult to perform everyday tasks. Sleep does not alleviate the symptom, activity often makes it worse, and depending on the severity of the case it can vary from:

  • Needing to take things easy and possibly rest during the day. You may not actually sleep, but you lack the ability to follow your normal routine.
  • Sleeping longer at night and/or needing a nap during the day. You may be able to do a lot of things, but you’ll suffer for it later. Half days are the most you can manage.
  • Sleeping night and day. Even everyday tasks may be beyond your strength, you probably struggle to leave the house, or even your bed.

With ME/CFS, whatever level of severity you suffer from, if you attempt to ‘push through’ then you’ll suffer for it. Your symptoms are likely to last for longer and may get worse.

My experience: My level of fatigue varies greatly from perfectly normal when I’m well to not far from unconscious when I’m at my worst. This is not just tiredness or exhaustion orRelated image ‘I’ve been up for three days straight’. It’s more like zombification, except zombies have more life in them. When I’m severely affected I’m one breath away from comatose. i.e. I might wake up before midday and manage to get up but basically I’m asleep for most of the day, it’s near-impossible to wake me and if you manage it I’ll be asleep again – deeply asleep – in seconds. I’ve read about other people struggling to get downstairs or wash their hair. . . I’m fighting to persuade myself to get out of bed to the loo. I may literally spend a day asleep, waking only a few times to stagger to the bathroom and back.

It’s not always this bad though, that’s only my worst times. My most common level of fatigue these days is up by 10/11am, sleep for some of the afternoon, and in bed asleep by 8.30/9pm. (Again, when I’m suffering an episode, not while I’m well)

My tip: get to know your condition, your warning signs, and as hard as it is (for both you and those around you) it really is better to rest when you need to rather than trying to keep going and then collapse completely.