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.

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!

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.

 

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 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.

Category: Medical Information

This is not professional medical advice and should not be treated as such.

So I want to do a quick introduction to this category, because I don’t want to be accused of giving false information or dodgy medical advice. In Medical Information I’ll talk about (surprisingly enough) the medical side of having ME/CFS. Some of the information will be drawn from my own personal experiences, some from the internet or books or other sources. (If it’s somewhere specific I’ll try to cite it) I have no medical qualifications and just because information is included here doesn’t mean I endorse it or have experienced it personally.

I will strive to ensure the information included is accurate, informative, relevant, unbiased, and up-to-date.

I’m hoping to cover causes, symptoms, treatments, classification confusion, and anything else medical that people can think of. If you’d like me to look into something/discuss something and I don’t, then please let me know and I’ll try to do so. Ditto if I get something wrong – the idea here is help people.

This is not professional medical advice and should not be treated as such.