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.

ME Association Leaflets

The ME Association (MEA) produces a variety of leaflets on different aspects of ME/CFS. Many of these are based on articles produced for their magazine: ME Essential. These leaflets are only available through the MEA, as a digital download from their online shop or by completing their order form. The majority of the publications cost about £1 depending on your location, and are about 3/4 sides of A4.

The leaflets are divided into groups to make it easier to find what you’re looking for:

  • Benefits & social care – what benefits and assistance are available, help filling in forms
  • General information – what causes ME, your questions answered, explaining ME to other people
  • ME Connect – this is the name of the MEA telephone and email helpline. The series of leaflets was developed based on concerns raised through this service
  • Medical management – symptoms, their management, potential treatments. . .
  • To whom it may concern letters – information on how to make applications and requests

The information in the leaflets is subject-specific, organised, easy to read, and to the point. There are also signs that the older leaflets are updated as well as new ones being added. Because these are just leaflets, there is a limit to how much information is in them, but they seem to cover the main points of their topic and there are often ‘further information’ contacts included.

Potential therapies, whether mainstream medical or alternative, seem to be dealt with with a balanced view – what current theories are, supporting evidence, how reliable this evidence actually is, potential side-affects, current research and trials etc. Where relevant, suggestions to consult your doctor or other specialist are made.

The leaflets are especially handy if you’re interested in a particular topic, because you don’t have to buy a whole book and rummage through for one chapter, you just choose the leaflet you want and (if you get the download) you can get it instantly.

Do watch your spam folder – the first time I bought a leaflet, the email with the link to download ended up in spam!

Conclusion: cheap, useful information on a variety of topics from a reliable source. They tell it how it is – both when things work and when they don’t. The tone of the writing conveys level-headed calm.

These leaflets are not designed to replace reputable medical guidance.

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.

 

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.

Web-View: ME Association

The ME Association website was the second stop on my research trail after checking out the NHS offering, and there’s a whole lot going on here. Below are the items on the top menu:

  • Home – gives a few sentences about each section of the site
  • About ME – what is ME/CFS, symptoms and diagnosis, causes, explaining ME/CFS to other people, treatment of ME/CFS.
  • About the MEA – what they do, who’s involved, how to get involved
  • Support – how to contact their helpline, search for your local support group, and information on councelling services
  • Research – current, published, volunteering for, and how the MEA supports reseach (and chooses to which to support)
  • Helpful Services – adverts for products and services that may interest ME/CFS sufferers
  • Contact us
  • How you can help – how to make donations, fundraising events, sponsored activities, fundraising support, ideas, and more
  • MEA shop – books, leaflets, merchandise and gifts, join the MEA

Down the right-hand side are additional links to join the MEA, visit the shop, see the latest news, contact and donation information, quick links to the latest posts, and a searchable archive.

I thought this whole site gave an impression of competence, understanding, and support, which is what they say they’re about.

ME Association: “Informing and supporting those affected by ME/CFS.”

The information is presented clearly in organised, easy-to-assimilate chunks with more details available if you’re willing to pay a small amount to get one of the many leaflets on offer.

The leaflets themselves come in two formats: you can buy online, paying slightly less to get a downloadable version, or send off an order to get a physical leaflet posted out to you (costing a few pence more). The leaflets are approximately four sides of A4, and are available on a variety of topics from general information to medical management to benefits and social care.

I actually first visited this site several years ago but didn’t look at it in detail for two reasons. One, since I was using the computer I know I must have been feeling reasonable and two, when I’m feeling better I try not to think about anything to do with ME/CFS. Sort of like pretending it’s not there. Until it is. I wish I had taken a closer look because there is so much good information here. As well as getting a few of their leaflets to look through, I found my local ME/CFS support group, I’m still reading through some of the information on the website, and I plan to check back now and again to see what research is going on.

Definitel

Web-View: NHS

The first link I chose when looking for information on ME/CFS was the NHS website, assuming it was going to be trustworthy, up-to-date, and have plenty of information.

The condition can be found in the Health A-Z (or use the link above) under Chronic fatigue syndrome or ME. Both take you to the same pages, titled ‘Chronic fatigue syndrome’ which then offers various sections:

  • Overview – divided further into an introduction, symptoms, causes, diagnosis, and treatment.
  • Clinical trials
  • Community
  • At the right-hand side are lists of useful links, both within the NHS site, and external

On the Overview the information is reasonably well laid-out and easy to understand, but it’s pretty general: gives the basics and little else. (Which I guess is kind of the definition of an overview)

The clinical trials tab offers a database search of trials currently taking place. You can filter by whether or not they’re recruiting, trials for children, and which country they’re taking place in. Selecting a link takes you to further details of that trial.

The community has a forum for questions and blog posts, although I’m assuming you need to join/sign up to participate. As you might have guessed from my lack of detailed knowledge, I haven’t been active here, only peeked at the initial page.

Overall I found the website has good basic information which I trust to be accurate at the time of posting (Somewhere on the page should be a ‘last reviewed/next review due’ date) and it seems to be checked every couple of years. I guess a slight concern is, is that often enough to count it as up-to-date? Then again, there haven’t been any major changes in the basic understanding of symptoms, treatments, or causes, and presumably if there were the people who maintain the site would know and update accordingly. Although it doesn’t have masses of detailed information, it offers links to places where there is more: more details of the condition, more support, more information on research.