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.

A Writer? Seriously?

This is something I hear regularly. More so from myself than other people funnily enough. It’s that doubt, that voice from childhood wriggling in your brain: ‘Writing? You mean like a journalist? You wouldn’t like that.’ ‘No, I mean writing as in stories, books. It’s a real job.’ ‘It’s a real job for other people though, it’s far too uncertain to be something you’d want to go into. It’s almost as bad as acting or music! What you want is a good steady profession like accounting or computing or teaching. Become a laboratory assistant, just don’t try to be a writer!’ (I wasn’t actually told I couldn’t be anything, I was just unknowingly steered toward certain things and away from others.)

Trouble is I am a writer. I wake up in the morning and the first thing I think about is probably writing – what am I working on at the moment, have I solved that problem, oh heck I’ve finished something, that means I’m on editing! During the day I can sit typing for hours without noticing. Before I go to sleep the characters whisper–

Yes, I’m a crazy person too. I hear voices. My characters often refuse to do things that are out of character or a bit iffy, ask if we can please get on with the story, and demand to know how I’m going to get them out of the situation I’ve stuck us in. It’s a common enough complaint among writers. One said if they weren’t a writer they’d be in serious trouble. I mean, hearing voices, compulsive behaviours and rituals, taking drugs (caffeine only. By the bucket) suffering from multiple personalities, delusions. . . Not a good prognosis.

So, a writer but not a published one, which means I’m not an author. (Subtle difference but a big one) Does this mean, since I’ve been writing for however many years and haven’t yet had anything published, that I’m bad at it? Not necessarily. Could be I’ve been submitting my work to the wrong places, been unlucky, just need to make a slight change to my style and I’d get there. . . Sometimes it feels as stupid as saying you nearly won the race. Because it doesn’t matter how nearly you were if you didn’t win. But at the same time writing is so subjective, so vulnerable to the choice of judges, the chance of who else happens to write a story like yours but theirs is just a snitch better.

My writing story: how I started writing. It all began in school. I enjoyed English classes, I loved reading, and the only downside was the stories we started in class usually didn’t get finished. It was a ‘write the first chapter’ exercise or ‘we’ll finish this next week’ and we never did. I started writing my first novel while I was in secondary school. It turned into a series of novels which I worked on through college, had a break from for the first couple of years of university but then I got back to in my final year. Those notebooks still sit on my writing shelf.

I wrote on and off after that: For My Eyes Only. Got to writing a bit more seriously a couple of years back. I’d had a bad year health-wise, and writing short stories gave me something non-active and not too intimidating to do. Sometimes the brain requirements fell through, but that could be fixed during editing! I showed my work to a couple of people, I saw a poster advertising a competition, and I was hooked. Competition entering is addictive I tell you! And expensive if you’re not so selective, as I wasn’t that first year. After I weaned myself off the competitions I was still writing, but I was back onto novels: a fantasy YA, Regency romance, contemporary romance, sci-fi, a cosy murder, more romances, a ghost story. Not all of them got finished, but I was enjoying having a go at a bit of everything.

There’s so many different routes to go down now as an aspiring author: traditional agent and publishing, entering competitions and making submissions to magazines and journals, self-publication, crowd-funding projects like on kickstarter. . . And don’t get me started on the social media and marketing side of things! Trouble is, several of those options require investment – pay for manuscript editing and assessment, agents get a percentage, publicists get a percentage, having a proper author website can be costly, getting your book self-published often costs, and then there’s cover design– Sorry, sidetracked. What was I saying?

Oh, yes, lots of different routes to choose from. All requiring (unless you’re already rich) a writer to be also editor, designer, marketer, and all while having a ‘real’ job. I’m currently teetering on the precipice: should I self-publish? I’ve edited (and re-edited over and over and over) one of my novels, formatted it how they want, designed a front cover – thank goodness for my limited art skills right? – and now. . . Now I’m thinking things through, trying to decide whether or not to go ahead.

The writing part is so much fun! It’s everything else that’s the pain. I just then feel bad for all these stories sitting on my hard-disk or tucked away on my bookshelf. I can’t stop writing though, and if I’m going to be spending my time on it I might as well keep sending work out to see if anything comes of it. I guess the worst that can happen is I get rejected. Again. Again, again, again, again, again, again. And it’s not always just a no. I’ve had work shortlisted, and one piece has been accepted for publication. (Who knows when it’ll actually be published mind)

Plus, I could claim it’s therapy and then who’s going to tell me to stop? Yeah.

“In my writing I explore situations and express otherwise pent-up emotions, in a healthy and creative way.”

Definitely sounds plausible.

 

Book-view: ‘Living with M.E.’

Title: Living with M.E.: the chronic/post-viral fatigue syndromeProduct Details

Author: Dr Charles Shepherd

(Image from Amazon. Click here to view)

 

‘Living with ME’, as you might guess from the title, is all about ME/CFS. There are four parts to this book:

  1. What is ME/CFS (definition, history, causes, symptoms, quality of life and recovery, current research)
  2. Practical steps toward coping (dealing with doctors, drug treatments, self-help, mind and body, alternative and complementary approaches)
  3. Learning to live with ME (3 case histories, relationships, jobs, your home, increasing mobility, help and benefits available in Britain)
  4. Appendices (useful names and addresses, further sources of information)

In the blurb on Amazon it is described as ‘A well-researched, comprehensive guide, LIVING WITH M.E. is THE book to buy for any M.E. sufferer who wants information not speculation‘. Certainly as I read it I was going – that is so true. I have that! I never realised that might be connected to having ME/CFS. I wish I’d read this years ago. . . There were also bits that I skimmed or missed out entirely either because they weren’t so relevant to me or I wanted to read other bits more.

What’s almost as interesting as what’s inside the book is the divided opinions it seems to stir up. (Check out the reviews on Amazon!)

A lot of the condemnation levelled seems to relate to 4 points:

  1. Information is out of date. The publication date may be 1999, but the book can be found on the MEA website so presumably has their approval. If that’s not good enough for you then (to put it bluntly) don’t buy it. Also, from what I’ve read, although lots of studies are ongoing there hasn’t been any great change between the majority of what’s in this book and current provable information. Admittedly I did only skim-read some chapters.
  2. Conflicting/confusing advice. Consider: no-one knows what causes this condition, there are a huge range of symptoms, and there are no definite cures or treatments for ME/CFS precisely because what works for some people doesn’t work for others. Is it surprising then that Dr Shepherd doesn’t say ‘do this and you’ll improve’? He gives you information and lets you make up your own mind.
  3. Information is wrong. A serious statement if true and since this book matches information I’ve seen from other sources. . .
  4. It’s discouraging and depressing. I’d say realistic and honest personally. The book does not dispute that people get better. It encourages you to have hope, keep trying, and have a positive attitude toward getting well. What it doesn’t do is give false hope and declare that because one person (even several people) got better this way it means that everyone can.

I got a second hand copy of this book and must admit I was somewhat daunted when I saw the size of it. (512 pages) But, because the information is so clearly divided into sections as well as chapters, and there’s a decent index at the back, you can find what you’re looking for quickly and easily, and you don’t have to read the bits you’re not interested in. If you want to go straight to treatments then do so. If the science of the condition hurts your head (it does go a bit technical in places) skim it, or skip it altogether. Simple.

Because no definite ‘this is so, do this’ advice is given, this may be more of a challenging read than other books on the topic. But surely that proves the information given is thorough, reasonably balanced and genuine? For example, when dealing with alternative and complementary therapies (a large section I feel I should point out) both what the therapy is to treat and potential side-affects are given, then sometimes the author’s opinion on whether this treatment is worth trying.

The book makes you think – here’s the positive, here’s the negative, and have you thought about this?

It’s true, if you want inspirational stories then this probably isn’t the book for you, but if you want facts and useful advice, then this is a decent place to look.

Note: Dr Shepherd is medical adviser to the ME Association, and suffers from ME/CFS himself.

 

Symptom: Psychological & Emotional Issues

The main psychological and emotional issues faced by sufferers of ME/CFS are:

  • Depression
  • Anxiety
  • Emotional Liability

Depression is a separate illness in itself, but as with other conditions many of the symptoms are similar to those of ME/CFS. (Similar but not indistinguishable – there are differences to look for.) For example, depression can make your feel fatigued and disconnected, you can have difficulty concentrating or get aches and pains with no obvious physical cause. Sound familiar? These days there is a lot of information around on depression, the top site when I searched being

Mind: the mental health charity.

There you will find information on many types of mental health issues including depression and anxiety, and suggestions for where to look next if you think you might need more information, help or support.

Unlike depression and anxiety, I had never heard of emotional liability until I read ‘Living with ME’ by Dr Charles Shepherd. In this book he explains that emotional liability is when,

“. . .the emotional state and mood may start to fluctuate widely, often for no apparent reason. . .”

Although it is sometimes connected to the frustrations of living with ME/CFS. Unexpected tears, irrational anger, or sudden low spirits can all be part of it.

Bizarre as it may sound, having a possible explanation – even if there’s no treatment – may make a person feel better simply because there is a reason for how they’re feeling. I experienced it when I was first diagnosed: the relief of having an explanation and knowing I wasn’t making up how badly I felt, of having someone say it was ok. It happened again when I started researching the condition recently: when I read about emotional liability I had one of those ‘that is so me!’ moments, where before I’d thought I was just being bad tempered. Then again, maybe I was. . .!

Put another way, although I’ve lived with this condition for years I hadn’t realised how many different things it can affect both physically and emotionally, and that there are levels and nuances between clinically depressed and low spirits. I’m not physically better for knowing this, and it doesn’t stop me feeling bad, but it has given me some sort of reassurance/comfort/positivity/solid ground from which to face the difficult times.

Book-view: ‘The Tiredness Cure’

Title: The Tiredness Cure:how to beat fatigue and feel great for good

Author: Dr. Sohere Roked

(Image from Amazon. Click here to view)

 

This book was lent to me recently, and although it’s about general tiredness it does have some stuff in about ME/CFS so I thought I’d review it here. I’ll admit straight off that I didn’t read the whole book, or even very much of it, because I was interested in it from the ME/CFS perspective.

In the chapter ‘Medical Causes of Tiredness’, there is a subheading ‘Chronic Fatigue Syndrome’. Within this section is the most basic information on what CFS is, followed by short paragraphs of the common recommendations made for management. I’m not sure how specific I should be here, so I’ll only say that of the methods listed I know two have been vetoed as being unhelpful and potentially harmful for ME/CFS patients, and the suggestion has been made that they be removed from lists of recommended treatments immediately. (Information from MEA)

Pacing, which I thought was the most common, well-known and helpful method of management, was not mentioned. The closest I could find was ‘activity management’, which seems to be setting goals and gradually increasing your activity with the involvement of a therapist. Which isn’t really pacing.

The final item in the chapter was ‘the holistic approach’.

“Holistic – medicine: characterised by the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of a disease.” Wikipedia

Here, Dr. Sohere Roked states that she would not make a diagnosis of Chronic Fatigue Syndrome until the patient “had made drastic lifestyle changes”. These included a change of diet, taking up gentle exercise, managing stress with various techniques, and potentially having a high dose of vitamins and supplements. It was suggested that her 3-week energy cleanse would be a good be a good way to start your recovery.

Personally, I don’t believe a sudden and potentially drastic change to diet – part of which involves liquid meals and increasing your exercise – would be a good way to deal to with ME/CFS. But then I don’t agree with most diets in general so. . .

On the whole, reviews of this book on Amazon are positive. However, working from the small portion I read, and coming from the point of view of a CFS sufferer, I would not – could not – recommend this book. The information on ME/CFS is basic, and the methods of management mentioned are (in my unqualified and completely personal opinion) questionable.

Have a different take? Let me know.

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!