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.

Manual Therapies

Manual therapies (so I have recently learned) are those that use the hands to treat disorders of bones, muscles and joints. In this post I’ll look at physiotherapy, chiropractic, massage, and acupuncture. Although acupuncture is not a manual therapy (no direct use of hands) it fits in quite nicely with the others! It should be noted that although only physical symptoms are treated with these therapies, they can also promote mental and emotional wellbeing.

Both physiotherapy and chiropractic work with all ages of people. The treatments are most effective when the patient is actively involved in the process – when they listen to advice given and act on it. This means (for example) if you’re told to do certain exercises, then do them. If you don’t do the work you won’t see an improvement, and if you’re not going to follow the advice you’re given then why go?

“Physiotherapists help people affected by injury, illness or disability through movement and exercise, manual therapy, education and advice.” The Chartered Society of Physiotherapy.

Physiotherapists work in various settings including hospitals, health clinics, and sports centres. They help patients with various health conditions, including those affecting bones, joints and soft tissues; brain or nervous system; heart and circulation; lungs and breathing. Main approaches used are education and advice, tailored exercises, and manual therapy.

“Chiropractors are trained to diagnose, treat, manage and prevent disorders of the musculoskeletal system (bones, joints, and muscles), as well as the effects these disorders can have on the nervous system and general health.” British Chiropractic Association.

Chiropractors use a range of techniques to treat patients, focusing on gentle manipulation of joints and massage. Treatments can also include advice on diet, lifestyle, exercise and posture; assignment of exercises to do at home; use of ice, heat, ultrasound, and acupuncture. Because chiropractic is seen as a complementary/alternative medicine, it isn’t looked on favourably by the medical profession and is not commonly available on the NHS. This means you’ll probably have to pay for treatments privately.

Massage: “the rubbing and kneading of muscles and joints of the body with the hands, especially to relieve tension or pain”Google.

Massage is often viewed as an indulgence, but it can also be of benefit to your health and wellbeing – if done properly a good massage can significantly reduce pain and tension, and improve your mental state. It can be offered as part of other therapies, such as the Chiropractic, or it can be a treatment in itself – e.g. a sports massage. There are also different levels of treatment ranging from gentle and relaxing to a deep tissue massage that will probably leave you with a bright red back.

“Acupuncture is a treatment derived from ancient Chinese medicine. Fine needles are inserted at certain sites in the body for therapeutic or preventative purposes.” NHS.

Although acupuncture is a complementary/alternative therapy, it is becoming more accepted by the medical community and is available in some circumstances on the NHS. There are differences between Western uses and the traditional Eastern methods, and so you may wish to find a traditional practitioner to visit. Acupuncture is most commonly used to alleviate pain, although it also helps a variety of other symptoms. (A consultation will be required to determine the best course of treatment) As well as improving specific symptoms, it can produce a feeling of wellbeing.

A few words of warning:

  • If you seek treatment from a practitioner of any of these therapies it is up to you, the patient, to check their credentials. Look to see if there are certificates displayed (what for and where are they from), ask about their qualifications, do a bit of research on the practice beforehand. You are trusting these people and it’s not out of place to ask a few questions.
  • You may experience some pain after a treatment, however it shouldn’t last much beyond that day. Speak to the practitioner or a medical professional if you’re concerned.
  • Not all practitioners work in the same ways, even within a single discipline, so you may have to try several different practices before you find one that suits you.
  • Although physiotherapy and chiropractic sound similar in some ways, they are not the same.
  • Most of these treatments will require an initial consultation followed by a series of appointments.
  • Treatment can become expensive, especially if you go regularly.

 

External links:

Questions for a Doctor – Part 2

I went in for my blood test results and, surprise surprise, everything is fine. Which is only what the doctor suspected of course and these blood tests are only being done because the ME/CFS clinic she referred me to wants them done. . .

In fact I did have two borderline results. One was vitamin D (Uh, it’s the end of winter and we’re in the UK, most of the population probably has slightly low levels right now) and the other was iron. What was done? I was told to “get out more, you have to get out!” and given a prescription for iron tablets because “someone as young as you shouldn’t have levels that low.” The woman is obsessed with my age!

And she wasn’t done with me yet. “What changes have you made to your lifestyle since I saw you last?

To put it politely, I was flabbergasted. (An excellent word don’t you think?) What changes was I supposed to be making exactly? As far as I could remember, she hadn’t told me to do anything except go for the blood tests. And get a job. Was I supposed to have done that within the last few weeks, while I’m only just recovering from the effects of a Christmas cold that lasted over a month? As it happened I’d also had an infection under a tooth which was leading to an abscess and had been in agony and taking painkillers by the dozen the last week or so, along with antibiotics prescribed by my dentist.

You’ll be amazed to hear I hadn’t felt up to doing much. Not that I knew I was meant to be doing anything in particular anyway.

When I explained about the toothache (such a poor description!) she nodded understandingly and asked if something like that set me back. Set me back. I had barely eaten for days and nearly called emergency services (not that she knew because she didn’t ask) and she wonders if that sort of thing sets me back.

I’ll admit I was a touch annoyed by this point, and my temper wasn’t improved by her conclusion that the next step was to have the ME/CFS clinic re-diagnose me so that they could sort me out.

I could almost hear the suggestion of, ‘therapy for a start, to correct your wrong-thinking and get you up and out into the world, because you’re too young to be malingering and wasting your life like this.’ For clarification, this wasn’t said aloud, but it’s certainly the impression I got.

Oh, and after I’ve been to the clinic I’m supposed to make another appointment to see my doctor to ‘give her feedback’. Does anyone else think this would be a waste of resources? I’m sent to the clinic because they know (hopefully) what they’re talking about and how best to help me. Why then do I need to report back to my doctor? Aren’t doctors able to contact the clinic directly anyway? If that sort of thing is happening a lot, it’s no wonder the NHS is struggling.

I can only hope I have a better time at the clinic, because this doctor really isn’t doing much for my faith in the medical profession.

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!