!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

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?

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.)

Thinking on Nutrition

To explain: this post is not about diets, it isn’t a set of rules or even guidelines covering what to eat or how much or when. You won’t find anything here about low fat, low salt, low carbohydrate, low sugar. . .

Good nutrition is important for everyone, and it’s one of the big things discussed when you get diagnosed with ME/CFS. Probably because poor nutrition can cause similar symptoms, loss of appetite can lead to poor nutrition, and there’s a theory that the condition is linked to deficiencies in certain vitamins or minerals.

If you eat properly you should get all the vitamins and minerals your body needs from your food, which means there shouldn’t be any need to take supplements. Moreover, taking an excess of certain vitamins can actually be harmful. Vitamins and supplements are best kept for when you think you’re not eating so well, such as if you’re ill and have lost your appetite, and then you can take a general multivitamin. (Check percentages of vitamins included – some give you ridiculous amounts like 500% of the GDA)

File:USDA - Basic 7 Food Groups.jpg

I found the above image here while searching for what was called (back when I was in school) a ‘food plate’. This is not a food plate. It looks very much like some sort of propaganda poster, though what for I’m not entirely certain. . . Anyway, although it’s heavily biased toward fruit and veg (perhaps because it’s for the department of agriculture?) it does have several features I find very interesting.

  1. None of the food groups are bigger than any others. It’s suggesting you eat from these groups but isn’t placing more importance on any one.
  2. Butter is a separate group from milk products, meaning that after the fruit and veg dairy is the most represented.
  3. There’s no low fat, no red meat, only certain fruit and veg, listed. The only thing like that it says is in the bread, flour and cereals group, telling you to eat whole grain.
  4. At the bottom of the poster it tells you to go ahead and eat any other food you want.

Now I’ve changed my mind, I am going to include a few guidelines I go by. I’m not suggesting anyone else should follow them, but during my (admittedly brief) life, I haven’t had a weight problem, my blood tests show I have all the vitamins and minerals a body’s supposed to need, and I get to eat food that I like. How do I do this? Simple. Sort of.

  • Work out if you’re a grazer and try to change the habit. Eating little bits all the time isn’t so good for you, but you might need to have smaller meals more often if you really can’t eat a lot at one sitting.
  • Eat from all the food groups (meat, fish, dairy, fruit, veg, grains) because you need all the building blocks – protein, fat, carbohydrates, sugars, fibre, etc.
  • Reduce portion sizes before cutting out types of food. A simple way to do this is by using a smaller plate.
  • Eat well at set mealtimes so you can cut out snacking in between. This doesn’t mean you can’t have any sweet things – once you’ve eaten a decent meal, if you still have room then you have your pudding.
  • If possible avoid processed food and ready-meals; prepare from scratch as much as possible so you know what’s going into your food. You can always make up bigger portions then freeze some or keep it in the fridge and take out a bit at a time.
  • A little of what you like does no harm – all things in moderation.
  • Your body often knows what it needs. If you’re craving something it could be for a reason. E.g. sometimes I crave crisps, and since I know I don’t get a lot of salt elsewhere in my diet, I have them.
  • Sometimes eating something is more important than eating healthily. E.g. if you’ve been ill or have no appetite. Just make sure you get back to normal sometime.

Ok, so that’s not really ‘a few’ guidelines, but I kept thinking of more as I went so. . . Anyway, as far as I’m concerned, good nutrition and eating healthily isn’t necessarily about cutting things from your diet. It’s more about balance. Having said that, one of the healthiest people I know eats not much else but meat.

I’m afraid it’s another of those things where in the end you just have to work out what works for you, and a good place to start is by ignoring fad diets, ‘super-foods’, and other people’s recommendations.

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.

 

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