!This is Not a Treatment!

The subject of this post is not a treatment and I’m certainly not recommending people go out and pursue this without due consideration, but for the female sufferers of CFS/ME there is something that might make you feel better. It does require a certain amount of thought, preparation, and commitment however.

Would you believe that getting pregnant offers approximately a 75% chance that your symptoms will show improvement? That’s right. It’s a known (and mostly accepted) fact, although it isn’t broadcast as a treatment for (hopefully obvious) reasons.

There are a few things to consider. Firstly it involves getting pregnant and having a baby. Secondly, the degree of improvement varies from none right the way through to almost complete recovery. Thirdly, in some cases the improvement doesn’t outlast the pregnancy. In other words, you feel better while you’re pregnant but once you’ve had the baby it’s back to how you were. Fourth, a small number of people do feel worse.

Just to make this crystal clear: getting pregnant is not a cure, it can’t even be called a treatment, and I’m not recommending anyone go out and try this.

Can you imagine though. You have a life-long condition and someone says to you ‘hey, there’s this operation with a 75% chance you’ll see definite improvement. The catch is, in exchange you have to be parent to this child.’ Would you go for it?baby-200760_640.jpg

Symptom: Non-Medical Issues

In addition to the numerous, various, and changeable medical symptoms that are part of CFS/ME, people have to deal with non-medical fallout. Below are a few examples:

Emotional issues. These have been covered somewhat already, the main one being depression – not necessarily a symptom of CFS/ME but often a subsequent result, many people with a chronic illness develop depression to some degree. The source of emotional difficulties may lie with the illness itself, (frustration, guilt, anger etc. over new limitations and sufferings) or with outside sources such as how other people treat you and react to the changes you have to make. A greater portion of time spent at home and/or alone can bring its own issues, and then fear and self-restriction can creep up on a person with CFS/ME if they’re not careful.

Relationships. Many people with CFS/ME find they lose friends, fall out with family members, break with partners, struggle to maintain dealings with work colleagues. . . This is understandable when you consider you’re going through a major life change, where many of your routines and habits will need to be altered, and you might not remain exactly the same person as before. It doesn’t make the ordeal any less painful. There is advice available on how to talk to other people about CFS/ME, and this may help, but some people will simply never understand the condition no matter how much either of you try. You may be able to stay friends with these people, you may not. If you usually end up feeling bad after seeing a person, it may be you have to make the decision not to see them any more: you will most likely have enough to feel bad about without someone else making things worse.

Personality changes. This is not a definite thing, but it seems to me that if you have a serious, long-term condition which has a history of other people misunderstanding it and treating sufferers poorly because of it, you are more than likely to see some changes here. Especially as, if you are to have any hope of managing the condition, you need to make life-style changes. Depending on the severity of the symptoms, changes may only be small, they may be short-term. . . or they can be permanent. Smaller changes might be that you take up a new hobby – yoga to help with stress, a craft to fill in time if you have to reduce your working hours. Your mood may become more uncertain, especially while you first adjust, and later it could depend on if you’re having a good day or bad.

A bigger change might be if a lot of people around you see you as becoming withdrawn, lazy, selfish – very negative viewpoints on what you have to do to manage CFS/ME. Having to give up work can also leave people with something of a difficulty, both emotionally (work can be very tied in with identity and sense of purpose) and practically (what to do about money, finding a useful/productive/fulfilling way to spend your time)

Money issues. These arise from having to reduce your hours, go to part-time work, or give up work altogether. Having money worries can lower your self-esteem and leave you feeling inadequate, take away your self-sufficiency, and cause additional stresses. It can also have a negative impact on your diet, and limits your available activities. It’s hard/impossible to get disability benefit when you have CFS/ME unless you are in a bed-bound situation and have no possibility of working at all.

Filling your time. This can be challenging as you have to suit your activities to your current abilities, and these can vary hugely. It’s also hard if you’re used to being in work and you suddenly find yourself with empty days to fill, days when you can’t do things you used to do on a day off.

These are a few of the non-medical things that may not be immediately apparent to either those diagnosed or those around them, but I believe (unfortunately) that all people with CFS/ME will face these at one time or another.

 

 

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!

Diet & Nutrition: take 2

When I went to the CFS/ME clinic to see the occupational therapist, one of the things I asked about was food supplements and alternative therapies. While rather evasive on the whole subject – I guess they don’t like to promote or dismiss outright anymore, and they need to save something for the other sessions – I was recommended to visit The UK Association of Dietitians (BDA) website for more information and their guidelines, which are the ones used by the NHS.

The BDA website is immense, and nothing helpful came up when I searched for Chronic Fatigue Syndrome. After a while of ferreting around though, I ended up on the Food Facts Home and found success. A list of medical conditions sounded hopeful. . . and indeed, there I found a fact sheet for CFS. (CFS Food Fact Sheet)

Looking over this short fact sheet, I found that the rough ideas I’d been following were more or less what was advised. Yay for me! Of course, I probably eat more chocolate than they’d recommend, and crisps for that matter. . . but I have to get my salt from somewhere, and nobody’s perfect!

For your convenience here’s a quick summary of their advice for a good diet for those with CFS:

  • Eat a balanced diet including food from all the food groups. These are starchy foods, fruit and veg, meat fish and alternatives, milk and dairy.
  • Many people with CFS find eating little and often is beneficial, so try three main meals with a snack in between to keep your energy levels up. Avoid biscuits, sweets, fizzy drinks, etc as snacks because. . .
  • High sugar food and drinks can make your blood sugar levels go haywire. You want to try and avoid this.
  • There is no evidence to support the effectiveness of different diets. Restrictive diets are only recommended if there’s a food allergy and then only under supervision of a dietitian or healthcare professional.
  • Concerning nutritional supplements: “There is not enough consistent evidence to support the use of vitamin and mineral supplements to manage CFS/ME symptoms.” Plus, many supplements are expensive and contain huge doses of the active ingredients, which can be harmful. If you do take a multivitamin or other such, make sure there isn’t more than 100% of the RDA for any of the ingredients.

How’s that for sensible sounding advice?

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.

Book-view: Fighting Fatigue

Title: Fighting Fatigue: a practical guide to managing the symptoms of CFS/ME

Edited by: Sue Pemberton & Catherine Berry

(Image from Amazon. Click here to view)

 

 

The authors of this book are various, their occupations including occupational therapist, physiotherapist, and nurse. The introduction reveals that the information is based on ME/CFS booklets developed over many years at the Leeds and West Yorkshire CFS/ME Service, and includes stories by sufferers. There is little to no information in this book about the medical side of the condition: it doesn’t go into the potential causes or treatments, and no symptoms are discussed beyond that of fatigue.

In the introduction it states that,

“. . . This book is designed to be a useful tool in your recovery. It gives straightforward and specific advice on managing different aspects of everyday life. . .”

There are eleven chapters:

  1. Managing your daily activity and energy
  2. Rest
  3. Sleep
  4. Diet
  5. Stress and relaxation
  6. Thoughts and feelings
  7. Memory and concentration
  8. Dealing with others
  9. Physical activity and exercise
  10. Relapse and setbacks
  11. Carers

Each chapter includes an introduction, information broken into manageable chunks, worksheets and activities to help implement their advice, and a ‘story’.

The advice given seems sensible and practical, and they way it’s given makes it reasonable to implement. The difficulty comes when you try to make the changes and stick to to them, because some of them involve a fair amount of commitment and– I want to say hard work. It’s hard work as in you have to be truthful with yourself, prepared to keep trying even if you get it a bit wrong at first, and committed enough to keep it up beyond the first weeks, months, years. . .

I think one of the best points about this book is that it encourages you to try, to not be too hard on yourself and to set achievable goals, while also reminding that a step back isn’t the end of the world. In other words it’s motivational without being too ‘everything’s sunshine and rainbows’ or giving false hope. It even mentions at one point that staying as you are would probably be easier, because making an improvement will involve commitment and hard work, and will at times be frustrating.

Although I have come across many of the ideas in one form or another over the years, (so it wasn’t especially useful for me) I can see it being extremely useful for others: it seems a good book for strategies that help you cope with fatigue, and may not only manage your symptoms but help you work to improve them.

Finally, I didn’t get a feeling of being preached at as you do in some medical/self-help books, and there was no jargon or complicated diagrams. Instead the general tone is of calm, easy friendliness – someone who’s had more experience than you offering a bit of advice. Many of the techniques are of the ‘simple in theory, hard in practice’ kind, but surely worth giving a go.

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: