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.

Symptom: Affects on the Nervous System

Basically the nervous system is the thing that transmits signals around the body, and if something interferes with it, all sorts of things can be affected. Some symptoms people with ME/CFS may suffer from in relation to the nervous system are:

  • Difficulty with temperature control, and night sweats
  • Tachycardia (rapid heart beat) & palpitations
  • Narrowing of blood vessels can cause facial pallor, cold hands and feet
  • Sudden changes in blood pressure can cause a feeling of faintness or fainting
  • Difficulty with balance
  • Disruption to sensory nerves can affect how you feel pain, pressure, temperature. It can also cause numbness, pins and needles, or an increased awareness of sensation

Usually none of these symptoms are life-threatening in themselves, but they can cause more serious issues. They can also be scary, debilitating, frustrating, or at the very least an additional problem to struggle with.

Apart from people constantly saying how pale you look, or the possibility of falling and injuring yourself, there are other considerations. If you feel you can’t trust your senses, it’s another reason to shut yourself away from the world. Ditto for feeling faint or having uncertain balance – even if you don’t fall you’ll probably be worrying that you might. Feeling cold is another thing that encourages you to stay curled up somewhere, and just putting on more layers really doesn’t help. Take it from one who has tried it!

Pacing

This won’t necessarily fit in with the official version of what pacing is, but it’s how I’ve come to see and understand the idea/technique.

Quick-Notes:

  1. Pacing is a technique that helps people manage their ME/CFS
  2. It’s about finding balance, and doing what you can when you can
  3. Most of the work has to be done by the sufferer, although there are ways other people can help, and there are professionals who can offer advice and assistance
  4. It’s an ongoing process to manage the condition, not a quick fix, not a cure

How to describe pacing? Pacing is (in theory) like becoming an adult: you have to accept things are different than before and that you’re not finished learning, become responsible for your own actions and decisions, be aware of yourself and what you’re doing, understand that actions have consequences, and on occasion be prepared to bargain & compromise. It’s also alike in that while guidelines and advice can be given, it’s up to the individual to work out how best to apply the concept to their own life.

Acceptance. This is sort of the first step, because if you don’t accept you have this condition – that you can’t carry on like you used to and that there will be unexpected ups and downs – then you’re not going to be able to get on with adapting and learning how to manage it. Unfortunately that’s where the advice ends: you have to work out how to come to terms with having ME/CFS for yourself.

Learning. As with any condition, there are many new things you’re going to have to learn. There are general practicalities: what the condition is, how it affects you, what potential treatments are, what your triggers, warning signs and limits are, how to deal with physical symptoms and what lifestyle changes these may necessitate. There are more personal considerations: how your character will help/hinder you, dealing with related emotional issues, telling family and friends and coping with their reactions, ditto for strangers. It doesn’t end there either, because if you have the condition for a long time your symptoms may alter, either in severity or type.

Responsibility. Although there will be people offering advice and support, you have to take responsibility for finding out what works for you, because there’s no checklist or or set of rules for ME/CFS. What works for one person may not work for another. It’s up to you to try things or not, to find out information, to implement suggestions, to keep going. It’s also only right (and means you’re a nice person) if you accept responsibility in another way – don’t blame other people when you suffer a set-back. If you went in to work, went out with friends, stayed up a bit later, that was your decision. Because everyone knows. . .

Actions have consequences.

Bargain & compromise. This can be a dicey business, but if you have a line-up of things you really want to do, you may decide (or may have to) implement these options. For example, you have a part-time job Monday, Tuesday, Friday. It’s your friend’s birthday and they want you to come out at the weekend. You always go out with your mum on Thursday. You know you’ve already been overdoing it a bit recently and there’s that bug going round the office. What do you do? Ignore your warning signs and do it all? You end up near-enough housebound for two weeks at least. Your other options? A) choose one or two activities which are the most important and excuse yourself from the rest. B) take it one day at a time, doing whatever is planned but taking it as easy as possible and being ready to call a halt if you get worse. C) decide you’ll do x even though you know you’ll probably suffer for it, leave y early, and rearrange z for another time.

Awareness. You have to become aware of how you’re feeling because no-one else can do that for you. Only you can know if you’re feeling run-down, and you have to be strong enough to follow through on that knowledge – if you think you’ve had enough say so, do something about it, stick to your decision. (Unless you really start feeling better or decide it’s worth the risk)

Honesty is also an important element of pacing. You need to be honest with yourself and others about how you’re feeling: don’t pretend nothing’s wrong if it is, because you’ll suffer in the end; but when you can do things – even little things – then do so because it will probably make you and the people around you feel better, more positive.

Google’s definition of ‘pace’ is to: walk at a steady speed, especially without a particular destination and as an expression of anxiety or annoyance. Well what you want with ME/CFS is to keep on at a steady maintainable speed, and setting goals might not be the best idea to achieve that. (Although that also depends on your personality and what the goals are I guess) The anxiety and annoyance you get for free, and will make themselves known without any say-so from you!

In the end pacing is about balance – you can’t do everything you used to, but if you take care you can shave off the major lows you have probably been suffering and establish a new ‘normal’. For the technique to be most effective it should become a way of life, almost instinctive. You sense your warning signs and heed them, and you don’t deliberately do more than you know you can handle unless you’re willing to accept the consequences. . . In other words, you do what you can when you can.

Pharmaceuticals

I’m starting off potential treatments for the symptoms of ME/CFS with pharmaceutical drugs because it’s the simplest category, not because they are necessarily better – being a recognised and accepted drug does not automatically make it more effective or safer than other remedies.

The most common drugs to take for ME/CFS are painkillers or antidepressants.

Painkillers or analgesics give relief from pain. They come in various classifications and strengths, each being used to treat a different type of pain. Some are available over the counter, others have to be prescribed, and some over the counter drugs may be prescribed at higher doses if you go see a doctor about it.

Antidepressants are commonly used to treat depression. As with painkillers, there are various types and strengths. While normal doses of these drugs are used to treat depression, lower doses may be suggested to give pain relief or to aid sleep.

Some things to consider:

  • Most drugs have side-affects, especially if you take them long-term
  • Antidepressants can be nasty. People I know have talked about them as ‘only putting off dealing with the real problem’, ‘highly addictive and very hard to come off’, ’cause more problems than they solve’. They are meant to be short-term use only
  • Bodies can adapt, so like with recreational drugs, if you take painkillers over the long-term you may end up needing to increase your dose to get the same result
  • Taking these sorts of drugs may ease the symptom but they are only masking it, not making it better or treating the cause.
  • There is evidence to suggest that painkillers don’t always work, and you could be taking all these pills to no affect. Supporting this conclusion is a BBC program ‘The Doctor who gave up Drugs’.

Personally, I try to avoid taking drugs whenever possible. (Like my mummy told me!) The first question I always ask myself is, do I really need to take this? Obviously, if the symptom is significantly affecting quality of life then you need to do something to try and ease it, and taking pills is often the first thought. My second question is, are there alternatives to consider? The answer to this is yes.

A Very Guilty Pleasure

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“Guilty Pleasure: something, such as a film, television programme, or piece of music, that one enjoys despite feeling that it is not generally held in high regard.” Google

I would personally expand this to: anything you derive enjoyment from but that you feel embarrassed, guilty, or ashamed to admit to others.

Everyone has guilty pleasures. It could be something you watch or listen to, activities or hobbies, things you eat, things you buy. I know I have various guilty pleasures and – shock horror – not all of them are related to ME/CFS. In fact I’d say the majority have nothing whatsoever to do with the condition. However, the one I’m going to share with you today does.

Shared experiences are important to people. Having just one other person understand what you’re going through, how you’re feeling, makes you feel that little bit less alone, maybe not quite so different. It’s a bit of a weird thing though, because although people can go through the same things – an illness, the highs and lows of a particular job, the triumph of achievement, the loss of someone they love – each person will ultimately experience and react to the event in slightly different ways. And no-one can really know how someone else feels.

For ME/CFS sufferers that dual weirdness of knowing/not knowing goes double, because even if someone else has the condition (and knowing you’re not the only one is something of a comfort) you will most likely have very different symptoms from each other. Also, depending on your situation and personality, you cope differently.

I am getting to the guilty pleasure bit, honest.

A few years ago there was a Christmas bug going round, and two people I know got it. I think it was the same one because they got ill about the same time, got better about the same time, and had similar symptoms bar one. One of them said it was like their brain stopped working: couldn’t concentrate, had difficulty finding words and talking, basically they struggled to do much of anything. The other said they could think but had no energy.

I said, put the two of you together and that’s how I feel when I get ME/CFS ill. Only it tends to last twice as long as you’ve had it. They stared at me. So long I started to worry. Suddenly I was engulfed by sympathy and questions and wow, they never knew. . .watercolor-1904317_640.jpg

More recently I overheard someone talking. They were saying they’d been feeling so tired the last few weeks- No, not tired. Drained. Like it was too much even to think of doing something, and nothing helped. I was about to go on my way when I heard them continue with: ‘if this is anything like how she feels I don’t know how she stands it.’

I knew they were talking about me. It made me feel like crying.

So that is perhaps my worst guilty pleasure. I don’t want other people to feel bad or be ill, and I certainly don’t get any enjoyment from their suffering, but  I can’t help feeling a certain thrill of something when I think someone really realises a measure of what I go through with ME/CFS. I wouldn’t wish this condition on anyone but at the same time, if they could feel it just for a day, a week, people would have such a better understanding – and appreciation – for it. It’s one of those things, ‘if you could walk a mile in my shoes. . .’

(Images from Pixabay)

 

Introduction to Treatments

As previously mentioned I have no medical training and I’m not suggesting people go out and try these treatments – anything included here is done as part of my own research and to inform about possibilities.

Also, as the ME Association puts it: “there is as yet no accepted known cure, and no accepted universal treatment“. Which means that while people do get better, the professionals aren’t sure why. Sometimes it’s for no clear reason, sometimes the patient claims it’s due to some treatment plan they’re following, however there simply isn’t enough conclusive data, although there are many trials going on at present.

Note: I was told by my consultant that ME/CFS is one of those conditions doctors don’t like to say is cured, but rather that the condition is in remission. (She might have used a different word, but it’s that sort of meaning) Because once you have it it will always be there inside you, and periods of strain could potentially trigger a flare-up. I don’t know if that’s true for all people with the condition or it’s just if you get it in childhood or what, but I think it’s something to be aware of.

During my research I’ve also found that if the word ‘cured’ is used, you want to look carefully to see if you can find its exact meaning. The results of one study I read about described a portion of cases as cured, and then later I realised these people weren’t able to have a job and still spent long periods restricted to the house. That seems strange to me, and it’s something you want to watch out for.