Mindfulness

I said a while back I was going to do something on mindfulness, and it’s taken this long because I hit a few hold-ups along the way. First computer issues, then health issues, and then there’s just so much stuff out there about mindfulness, and some of it is. . . not contradictory exactly, but it seems to have become a bit like yoga: some of it has become ‘popularised’, and then there are a lot of different methods. This being the case, I fell back on a few go-to sites.

The NHS has a page on mindfulness (here) which gives a basic description as well as links to find out more. It describes mindfulness as “knowing directly what is going on inside and outside ourselves, moment by moment.” In other words it means being aware of yourself and the world around you, and taking time to notice both. The idea is that mindfulness encourages an appreciation and enjoyment the world. It can also help with stress and depression both through the fostered connection between person and environment, and by helping people to notice the signs of stress or depression and deal with them.

In addition to the general introduction – which is one of the clearest and most reasonable I’ve seen for mindfulness – I really liked that toward the end there was this comment:

“Mindfulness isn’t the answer to everything, and it’s important that our enthusiasm doesn’t run ahead of the evidence,”

My next visit was to Wikipedia, which had the same basic definition: mindfulness is a process by which people focus their awareness on internal and external experiences taking place in the present moment. It had a lot more on the psychological aspects, its origins and links to Buddhism, and how it can be used in different settings. It added that clinical studies have come up with results suggesting there are both physical and mental health benefits to practising mindfulness, and it be of benefit to healthy people as well as those with various medical conditions.

The final site I visited was Be Mindful, which had something of the same definition but presented in a way that instantly put me off. (Don’t ask me why because I don’t know, but a lot of the mindfulness stuff just makes me want to cringe/laugh, then run away while wishing desperately never to hear anyone talk about it ever again) Be Mindful advocates the use of mindfulness techniques as tools to manage your wellbeing and mental health. This includes its use to alleviate stress, anxiety, and depression by helping people manage difficult experiences and situations. There is information on evidence and research, finding a teacher, learning online, and FAQ’s. They also do an online stress test.

The two most common link-ins with mindfulness are meditation and yoga, I guess because both of these skills promote taking a bit of time out of a hectic day to slow down and breathe. And there’s the whole self-awareness and breathing techniques aspect.

I’m not going to go into any of this any further right now because a) I don’t want to bore anyone not interested even if those people stopped reading after the title, b) I’m sure most people reading this blog are more than capable of typing in a search term and finding these things for themselves, and c) I don’t see much point in merely repeating information that’s already out there.

As always, let me know if I’m wrong!

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.

Graded Exercise Therapy (GET)

Graded exercise therapy, a medical term defined by NICE (National Institute for Health and Care Excellence) as:

“An approach for managing CFS/ME that involves planned increases in activity or exercise, working towards goals that are important for the person with CFS/ME. The first step in GET is to help to stabilise the amount of activity a person can do, then a manageable level of exercise is added. This is gradually increased towards aerobic exercise if and when the person is able, aiming towards recovery.”

The NHS adds that “GET should only be carried out by a trained specialist with experience of treating CFS and, if possible, should be offered on a one-to-one basis.”

The idea sounds reasonably straightforward, although no doubt the execution is rather more troublesome! Find out what you’re capable of, then very slowly increase, possibly using goals as milestones and incentives. Although the word ‘exercise’ is used, it doesn’t mean going for half hour walks. (At least to begin with!) The activities need to be tailored to the individual and could be anything from stretches, to standing and sitting, to walking for ten minutes, to swimming, to going to the shops, and so on.

But there are very different opinions about the suitability and success of this as a treatment method.

NICE and the NHS currently support the use of GET as a key form of treatment for ME/CFS.

The ME Association leaflet titled ‘ME/CFS: your questions answered’ says that while NICE guidelines recommends that GET be offered to those with mild to moderate symptoms (along with other treatments) they do not agree with this “. . . on the grounds that existing research evidence is weak and not consistent.” They have also carried out their own survey which returned the result that ‘significant numbers’ found the treatment had no effect or actually made them worse. They allow that some people find GET beneficial, but since it’s not currently possible to determine who these are beforehand, and given the number finding otherwise, it should be discontinued as a blanket treatment. They state that if it were a licensed drug it would already have been up for review.

It also sounds as though the success of GET depends on many things, including:

  • The attitude of the specialist supervising. Do they believe ME/CFS is a real condition with physical symptoms? Do they make it clear that the patient has to take things steadily and may have to ease off if they have a bad day, and that if they have a bad relapse they may have to begin all over again?
  • How the individual implements the method. Do they keep pushing themselves to improve and so cause a relapse or do they stop when necessary. Do they try once and then give up? Do they lose hope when it turns out not to be a cure.
  • The condition. ME/CFS is a variable condition, you can have good days and bad days, be fine for ages then suffer a relapse. Different triggers may make GET unsuitable for some.

For me, given that I’m used to managing my own condition, I already push myself to do what I can when I’m able, I don’t fancy having to drive to the clinic every month, and I hate setting ‘goals’, I don’t see this as something that would work for me. If it’s even offered. Not that I’m refusing it out of hand, I just don’t see where the benefits would come in.

Sources:

ME/CFS Clinic – I got there!

Yesterday was my appointment at the ME/CFS Clinic. The news is. . .

  1. I really do have ME/CFS. I have been diagnosed twice, so there’s no arguing with it.
  2. There’s no miracle treatment but they think there are things I could try that might help.
  3. I have to wait for a phone call to make an appointment to go back.
  4. I am to start thinking about my future

So I have fallen from one wait to another, and likely there will be another wait after that, and another after that. . .!

Immediate advice I was given was to try using something called ‘First Defence’, which is a thing meant to help prevent you getting colds, and the other thing was to get zinc lozenges, which does the same thing. Anyone heard of those, or tried them?

I’m also to start thinking about what I want to do with my life (I think I might be slightly insulted) which feels like the ‘what do you want to be when you grow up’ question all over again. Being a bit before themselves aren’t they? I mean, there’s positive thinking and then there’s arrogance: just because I’ve been dealing with this without medical supervision doesn’t mean as soon as they get involved I’m going to improve. Maybe I will, but I’m not going to go sky-high with plans just yet.

Think I should tell them something outrageous just to see what they say?!

The other things that I have to go back to learn are ‘tools to help me manage my condition’. From my previous phone call I would guess it’s going to be Graded Exercise Therapy and mindfulness.

  • Graded Exercise Therapy (GET) is when you gradually increases the amount of exercise you can do over a period time. The NHS supports the use of GET as a treatment for ME/CFS. The ME Association does not.
  • Mindfulness is a technique used to reduce stress, anxiety and depression by increasing awareness and ‘living in the moment’.

I’ll probably do a post on of these in the near future – there seems to be a bit of controversy over both methods and it’ll be research for what I might be in for!

I guess this first consultation was mostly just to confirm I have ME/CFS, because I wasn’t really asked anything much about how I cope or the emotional side of things. Which makes sense. The consultant/doctor diagnoses then the occupational therapist takes it from there. I’ll probably have to do another round of questions when I go again. . .

That’s where I’m at at the moment then. Which is pretty much where I was before as far as I can see, except I have appointments and talking and whatnot to (ahem) look forward to. Oh, and when my Gran found out I’d been to see someone she asked, “did they say when you’d be over it?”

By the way, if you haven’t been inundated with the mindfulness craze please let me know. I want to know where you’ve been living so I can go there – it will reduce my stress levels! (No insult intended to those who practice mindfulness, I understand it is a legitimate technique that has had a positive influence on many people.)

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:

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.