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 Information is out of date.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.

 

Chronic Fatigue Syndrome in a Nutshell

When you meet someone new and ME/CFS comes up (which it will do sooner or later) how do you explain it?

There are leaflets now with advice for these situations, but they’re more aimed at family/friends/work situations where you’re having something of a conversation. When someone you don’t really know asks and you know you have a few sentences – if that – to explain, what do you say? How do you compress this condition into a nutshell?

Here’s how it usually happens for me:

For whatever reason, I’ve revealed I have CFS. Almost straight away I add that it’s like ME. At this point either a) understanding dawns and it turns out that their relation/friend/friend of a relation has the same thing and they mostly become sympathetic or b) they look completely blank.

On seeing b) I realise I have to explain ME/CFS to someone who has no clue and may not really be interested, and I probably have little time to accomplish this. It didn’t take me long to realise that going into symptoms or mentioning fatigue wouldn’t get me very far, but what to say instead? One of the suggestions given in the ME Association leaflet ‘Explaining ME to other People’ is to say,

It’s like having flu, only it doesn’t go away.

Short, to the point, and as long as the person has had flu and remembers accurately. . . Well, it will give them an idea anyway. I tried to come up with some different non-medical ‘in a nutshell’ descriptions and it’s pretty difficult. How about,

You know the Duracell bunny? That was me. Then, for no obvious reason, I slowed up and developed all these problems. They checked the battery, the wiring, the mechanics. . . They’ve run all these tests but they can’t pinpoint anything definite.

Which when you think about it comes down to,

I’ve got a fault no-one can quite figure out. It makes it hard to do ordinary things a lot of the time.

Or,

I call it rag-doll syndrome because I have no energy: I flop about and have to be carried places. Stick a pin in me and it hurts though.

No, I haven’t actually said the rag-doll one to anyone. To be honest, no matter what I come up with, each time I’m asked I probably say something quite different because I get flustered and my mind goes a bit blank. It happens whenever I plan what to say to someone: I plan, I rehearse, the whole thing vanishes when needed. Anyway, whether you like it or not, if the person is interested they will almost certainly ask more questions so you’ll have another chance to explain.

Side-note: Do you answer questions about ME/CFS? I usually do (as best I can) because I figure, at least they are interested, and it’s not like the information is secret. I’d rather have people curious than dismissive.

Next time you’re in a situation requiring ME/CFS in a nutshell, will you say you have something like perpetual flu? A fault in the system? Rag-doll syndrome? Or do you have a different way of explaining these things?

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.

Three States of Being

This is a concept I have developed myself, and so far I haven’t come across it in any leaflet, book or website. I don’t know if that means it’s something unique to me and my syndrome, or if it isn’t medical, or I just haven’t read enough yet!

The idea is this: I have three states of being, quite distinct from each other.

  • Well. In this state I can live a ‘normal’ life. I don’t have to monitor how much I do, and if I do get tired or achy it’s the natural result of having worked at something physical all day. E.g. gardening. These periods of wellness tend to be during the months when it’s warmer and sunnier. I’m less likely to get (ordinary) ill, and if I do suffer physical, emotional or mental stresses it’s less likely to develop into an ME/CFS episode. (If it does it’s often brief – days or a couple of weeks) Most importantly, I feel well and like myself.
  • Transitional or ‘not quite right‘. This is usually when I’m about to go into an episode or when I’m recovering from one, but not always. I have to be careful of how much I do, stay well away from anyone who’s ill unless I want to get it, and I feel off/wrong/not quite right.
  • ME/CFS episode. I get the full range of symptoms provided by my own personal syndrome. These episodes can last from a week to several months, and there’s nothing to do but wait it out.

Surprisingly (or maybe not when you think about it) I find that the worst state by far is transitional. When I’m in the midst of an episode I’m already at my worst and usually so ‘not present’ that nothing much makes an impact on me. When I’m well the ME/CFS seems so distant it’s hard to remember how bad it gets. But when I just feel a bit off or start recovering from an episode, that’s when I get the most emotional upheaval. (upset, hopeful, fearful, despondent, frustrated. . .) My recovery’s are often slow and lengthy. I can think about doing things and want to do things but have to put restrictions on myself, then if I do too much and suffer a relapse or exacerbation. . . It’s harder than just being ill.

Is this something other people experience? If so I’d be interested to hear from you, as well as which you find harder: being ill, recovering, being well. . . Also when you’re well – or as well as you get – do you remember clearly how bad you can be at your worst or are you like me and the memory of it gets distant and dim?

A Condition of Variability

So far I haven’t covered in detail the most characteristic aspect of ME/CFS:

Variability

Cause, symptoms, treatments, they all vary from person to person so that in effect everyone has a unique condition. Added to this, there are fluctuations in the severity of symptoms both long-term and short-term.

  • Long-term – symptoms and their severity may alter, usually lessening if the person is coping well, but there can also be relapses where symptoms become worse than ever.
  • Short-term – often the person appears perfectly well, then without much (if any) warning they can become severely restricted in their activities.

In-between these two extremes there can exist the feeling of being ‘not quite right’. This in-between stage can persist for months at a time without the person developing the extreme pain, fatigue, etc that are commonly held to be the most disabling symptoms. (More on these three stages later)

This variability makes ME/CFS a difficult condition. Difficult to diagnose, to try and treat, to research, to live with. Difficult to believe in. (It’s easier to accept and understand when there’s a visible symptom, less so when there isn’t, and it gets even harder when the sufferer can go from living their life to incapable of cooking a meal within a single hour.)

So although variability isn’t in itself a symptom, I think it’s a major part of ME/CFS, and learning to accept that – that changes can be fast and unexpected – is an important step in coping. Also to be aware that your syndrome may not stay exactly the same the whole time you have it – when I was younger I got quite a lot of joint pain and headaches; recently  I realised I don’t get those symptoms so much but the brain fog seems worse and I’m more sensitive to noise.

True variations? Or something I’m picking up on since I started researching current thinking?

A Slice of History

I was diagnosed with ME/CFS as a child. I was in the last year of middle school (aged 10/11) and both the school and my parents said it was essential to find out why I was ill so much before I moved up to senior school. I was taken to the doctor, who asked questions and ran tests and sent me to the hospital, who asked questions and ran tests, and assigned me a consultant who- you get the idea.

With everything else ruled out, and since I’d had the symptoms for over a year (never mind the mandatory three months) she diagnosed me. She suggested that the trigger in my case – or at least a significant contributing factor – could be environmental: sick building syndrome. Between my first and second years (aged 8/9) the school moved to a brand new building. Right after that lots of people – students and staff – suffered with severe headaches and were going to the doctor with all sorts of medical complaints.

After being told I had this condition, my consultant said it was really unusual to get it so young (lucky me) and it was most likely I would have it for x years (I can’t remember the exact number) and then it would go into remission, hopefully for good but possibly flaring up if I had a period of excessive emotional or physical stress. If it persisted past that number, I would probably suffer from it to some degree for the rest of my life.

As for treatment. . . There is no cure, no single treatment. It was suggested I could keep a diary to help me cope (no thanks) see a therapist/have counselling (but you don’t really need to since you have a good relationship with your mother) and apart from that. . . try and learn to live with it.

I learned. It persisted.

But I’m sill here.

I know some people see my life as wasted and me as a layabout, because I don’t have a job, because I’m ill so much of the time, because my life isn’t conventional. (A ‘normal’ life, what’s that?) But most days I feel I’ve done the best I could, and I do do what I can when I can.

And I am still here.

 

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.